One of the most common methods of treatment for breast cancer is surgery. When a patient undergoes a mastectomy (partial or bilateral), a lumpectomy, or even reconstruction, the healing process can come with its own set of challenges.
After surgery, patients will be moved to a recovery room where vitals will be monitored by a medical team. Everyone’s experience is different but the average hospital stay is 1-3 days. If opting for a mastectomy and reconstruction at the same time, patients can expect to stay longer.
We are lucky to be able to call on our community of breast cancer survivors and ask for their insights. To help breast cancer patients facing surgery, we compiled a list of some of the most-used items to help provide comfort during a hospital stay or while recovering at home.
There was an overwhelming response; front button shirts, yoga pants, and an underarm pillow were some of the most popular answers. A back scratcher, a drain apron, and a recliner were some of the non-traditional, but genius, tips provided.
Dry shampoo and feminine hygiene cloths or wipes were also recommended to help patients stay fresh. Most patients are told not to shower until the surgical drains are removed, so these items can help with staying clean until it’s safe to resume a normal routine.
It’s important for the patient to give themselves grace and allow time for healing—let go of the ever-present chore list, the daunting task of grocery shopping, and the stress of cooking while trying to recover. Before a mastectomy, it may be helpful to ask friends and family members to start a meal train.
A survivor in our community, Ashley, shared how she effectively organized her home to prepare for her recovery time:
“Before the surgery I prepped my house and put things in reach and out of cabinets so I could do as much for myself as possible. For your drains, know that while they’re in, you will not be able to lift your arms over your head. So, knowing that, I took things down like coffee cups, plates, shampoo, etc. off higher shelves beforehand.
“I did a check three days before, of everything I used on a daily basis and was mindful of things I had to reach for. I was lucky enough to have my husband home but I’m also stubborn and like to do for myself as much as possible.
“Be prepared to not be able to sleep in your bed for a while, because it’s near impossible to get out of it once you’re laying down. I slept in a chair for a week or so before getting a wedge pillow for the bed, and that thing was awesome! I used it for about five weeks before I was able to use my stomach muscles to lift myself out of bed.”
This checklist has been developed in partnership with breast cancer patients, survivors, and physicians. Below are their tips for what to have on hand and what to do as you prepare for a mastectomy.
Download your free checklist here.
1. Place most used items in reach
2. Find a comfortable chair or recliner for sleeping
3. Grab a wedge pillow for transitioning to a bed
4. Start a meal train, or ask a friend to host one during recovery
5. Front button and loose-fitting shirts
6. Yoga pants
7. Pillow for support under the arm or seatbelt
8. Slip-on shoes
9. Snacks
10. Phone charger
11. “Drain apron”, cardigan or zip-up hoodie with pockets, or a button-up shirt with pockets for drains
12. Pen and notebook for journaling, tracking medication times, and questions for the doctor
13. Cooler on the porch, if receiving a meal train
14. Chair or recliner for sleeping
15. Dry shampoo
16. Cleansing or shower wipes
17. Comfortable pajamas
Answered by Meghan Hansen, M.D., NBCF Medical Advisory Council member and breast surgical oncologist at Texas Oncology.
Mastectomy recovery can take anywhere from 2-4 weeks, depending on the type of mastectomy performed. For example, recovery time for a mastectomy without reconstruction is typically closer to 2 weeks, while a mastectomy with reconstruction is often closer to 4 weeks. During recovery, the first week is usually the hardest because your movement is limited, and you likely will still be experiencing surgical pain. After that first week, every day gets easier. Once surgical drains are removed at around 2 weeks after surgery, patients usually start feeling much better. Restrictions on lifting and exercise are usually in place for 4 weeks total.
You should never be on bed rest after a mastectomy. Patients should be up and walking, with supervision, on the same day as surgery. Patients should ideally walk 3-4 times per day to get moving again and to help decrease the risk of blood clots and pneumonia.
Always refer back to the patient’s surgeon and care team. However, general restrictions include no lifting over 10 pounds for 4 weeks, no strenuous exercise for 4 weeks, and limited arm movements until the surgical drains are removed. Patients may have to sponge bathe while drains are in place. It is important to closely follow all instructions and restrictions given by your surgeon and care team.
Pain levels after surgery vary based on the type of mastectomy and if reconstruction was performed. Most patients who undergo mastectomy without reconstruction have little or no pain, even right after surgery. These patients typically take pain medication for 1-5 days. If patients have reconstruction, they usually take prescription pain medication and muscle relaxants the first week, then wean off of prescription medications to over-the-counter medications like Tylenol and ibuprofen during the second week. However, this varies per patient. After this, tightness and discomfort may still be present, but not to the extent that patients need prescription pain medication. If you are still experiencing pain after 2 weeks, contact your surgeon or care team to let them know.
Most surgeons will refer their mastectomy patients to physical therapy about 4 weeks after surgery. Physical therapy will help patients regain movement and range of motion, relieve muscle tightness, and address any scar tissue-related issues, with the goal of getting patients back to their baseline, or their normal physical condition before surgery.
No matter what the patient is able to pack or set out at home, we believe that having encouragement, support, and hope makes all the difference. Resources are open and available for patients and loved ones, and our team at National Breast Cancer Foundation is here for support.
Join the conversation! If you’ve gone through breast cancer surgery, comment below what your must-have recovery items were.
For the full comment thread of recommendations from survivors, check our Facebook post here.
Disclaimer: The comments on this post are not intended to be taken as medical advice. Opinions or recommendations do not originate from NBCF, unless stated. All community members should talk to their personal medical team before making medical decisions.
Last updated August 24, 2023
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I had size 36H and around the age of 24 I found out that I was BRCA2 positive. I’m now 30 and went into surgery for my double mastectomy the morning of 11/05 and was released as soon as I was back in reality. Upon arriving home things went south rather quickly. I was in a great mood and thought I was doing great but it turns out I had a subdermal hematoma and was losing about 100 mL every 30 mins just through my drainage tube. I became unresponsive for over 20 mins. My blood pressure was so low they immediately transferred me back to the hospital and my amazing doctor dropped everything and met me at the hospital for emergency surgery to stop the bleeding. I ended up loosing 2 pints of blood and they ended up giving me a blood transfusion. It was a very scary start to my healing process as I’ve never had a major surgery before.
All I can say is having an amazing support team and great doctors is a definite must. Arm pillows and a recliner helped make me very comfortable and eased the pain a lot. My doctor used staples and I got expanders. The pain isn’t as much of an issue for me as the pressure is, it honestly feels like someone is sitting on my chest whenever I’m standing or sitting up. I’ll end up having one of my drains in for over 3 weeks since they had to perform the 2nd surgery. The one thing I want more than anything at this point is a shower, and I wish I had seen this post sooner to learn about the shampoo basin.
I hope everyone has a healing and successful recovery and just know you are beautiful no matter what!!
Hey fabulous ladies! Aug 1 they found a tumor in my annual mammogram – i had no lump. Plan was lumpectomy, 20 day radiation and tamoxifen. Then, due to my father passing of pancreatic, it was suggested to do a gene test – boom. BRCA2 so now undergoing BL mastectomy on 17th. Will work with doc to figure out path to reconstruction but for me, a little something would be nice. Then in 2025, hysterectomy to ensure no ovarian cancer. Grateful for amazing team of docs and early diagnosis with option for preventative surgeries now. Grateful to this page as well for all the sharing support. Much love and gentle hugs.
I had both hysterectomy is a bit harder than the bilateral mastectomy in my opinion I just had my mastectomy without reconstruction on Thursday but
Good luck with everything
Did you choose to go flat
Hi. Newly diagnosed 09/25/24 DCIS stage 0! Praise God that it was found in this stage. Met with breast surgeon, Learned that the areas in question measuring 5 cm in distant and the reminder of same breast has questionable calcifications highly suspicious of atypical hyperplasia. So lumpectomy won’t be an option. Discovered a younger sister had breast cancer also. So now I’m waiting to meet with genetics. But I know because of family history places me at higher risk. I’m trusting God in all of this still. But oh boy, I did not think year 55 would bring so many changes all at once.
Wishing you healing and support throughout your procedures.
Hi All,
I was diagnosed with Invasive Ductal Carcinoma (stage 1) after a routine mammogram at the end of August. I just had a total mastectomy on September 30th and thought I would share the recovery items that were the most helpful to me:
– Recliner (borrowed from my parents). I wish it was an automatic recliner but still so thankful we were able to borrow this as it’s the number 1 most comfortable place for me to be after surgery. I half joke with my family that I am becoming one with the recliner… 😂
– Comfy button-down pajamas. I love the “Cool Nights” pajamas from Soma and have been living in these! I had needed new pajamas for so long and finally treated myself after a cancer diagnosis!
– I was sent home with a velcro drain belt that itched and irritated my torso like crazy, until I slipped this drain holder underneath it:
https://www.amazon.com/gp/aw/d/B09FVTRTLT?psc=1&ref=ppx_pop_mob_b_asin_title
– This “shampoo tub” so my husband could wash my hair:
https://www.amazon.com/gp/aw/d/B0D2LL755G?psc=1&ref=ppx_pop_mob_b_asin_title
Positive thoughts to everyone here in this community 🩷
This is all super helpful! I am about to go in tomorrow, so I was trying to read up on any last minute tips from recent more cases! I really appreciate it.:) best of luck to you!
God bless you and give you peace, strength and wisdom as you navigate this. I am undergoing a UL mastectomy on Monday, Sept 23. Right there with you in spirit and love.
I am also getting ready for a double mastectomy on Nov. 6th. I decided to not get reconstructive surgery at this time. I am 63 years young and had very large beasts 40 H! so what a change this is going to be. May God be with us all as we go through this journey.
I had bilateral mastectomy on Halloween. My very first surgery in my life born Christmas will be 73. Anyone can you share when this horrible pain and inflammation will lift . Call me a wimp but I had two horrible panic attacks. I don’t take any meds for depression I have always been strong but this has brought me to my knees. I had Stage 1 nothing in lymph nodes at all . I could have had just a lumpectomy but family history I went for the whole entire process like Kathy Bates, Jane Fonda. Etc. my question is when will this burning tightness get better
In July 2024, I was diagnosed with Invasive cribriform carcinoma and Ductal carcinoma in situ (DCIS), Her-2 Negative, Estrogen & Progesterone Positive cancer. I had a bilateral/double mastectomy on Sept. 26th with expanders for reconstruction. I am 54 years old and I have always had very large, beasts 36J. It has been a huge change. I feel blessed. I am adjusting to the new normal, seeing my toes while standing 😃. I wish I saw this blog before my surgery. It is extremely helpful. May God continue to give us grace and mercy. Blessings to all of us.
How is your recovery? i just about have the exact same thing you have. Ive just finished chemo though. now time for surgery. I had 1 lymph node under my arm and my tumor was at 12oclock on the left breast. ive been told ill probably have just a lumpectomy but im going to try and opt for a double mastectomy. im 27 so im hoping everything will go in my favor!
It was nice to see this post. I was just diagnosed with Thursday with aggressive ductile carcinoma and see the doctor on Wednesday. I will be 65 soon and would rather go flat. I’m a 42 K and have hated my breast. I plan on being a survivor. Again thanks
In July 2024, I was diagnosed with Invasive cribriform carcinoma and Ductal carcinoma in situ (DCIS), Her-2 Negative, Estrogen & Progesterone Positive cancer. I had a bilateral/double mastectomy on Sept. 26th with expanders for reconstruction. I am 54 years old and I have always had very large, beasts 38J. It has been a huge change. The most important think is that I am a survivor. I feel blessed. I am adjusting to my new normal, seeing my toes while standing 😃. I wish I saw this blog before my surgery. It is extremely helpful. May you God continue to give us grace and mercy. Blessings to all of us.
K?? I can understand wanting a break. Get the spacer. You may want some breastswhen it’s over.
I just had a bilateral. I’m going to use my own tissue for reconstruction.
Hi I am also 63; does the idea of being totally flat chested make you feel anxious? Im worried about not feeling like a woman or something. I’m probably having double mastectomy in November also.
Thx!
I just had a double mastectomy the 23 this month. I was also unsure if I wanted reconstruction or not. What helped me to decide to go with reconstruction was looking up what it looks like with and with out reconstruction. For me I felt like I wouldn’t like looking at myself without it. All I saw were mens chests. I was a C cup and was told if I chose to stay a C I would need to have expanders and a second surgery to place the implants. But if I went down to a b cup it would be 1 surgery. That was a no brainer for me. I wish you luck. It’s a hard thing to go through but as woman we are strong and will make it through. God bless you!
Hi Terri I would love to talk to anyone for help advice and info, very anxious I’m 66 will be 67 on thanksgiving my surgery is 11/22/24 I can’t have recon immediately. I’m having a double… had R br ca 1990, lumpectomy and radiation, 2019 L br ca lumpectomy and radiation, sept 2024 R br ca back after 34 yr s
All 3 occurrences are different. If anyone can give advice, suggestions or anything that will help I appreciate it. Please email me
I’m also 63; going to have mastectomy in December. Was wondering the same thing. Will I still feel like a woman!
K?? I can understand wanting a break. Get the spacer. You may want some breastswhen it’s over.
I just had a bilateral. I’m going to use my own tissue for reconstruction.
It’s a wild ride. Recovering from a double mastectomy now. My only suggestion is to make sure you research and have extra bras for recovery. The one they send you home in might just not work for you, so it’s better to have options on hand. I have tissue expanders and plan to do reconstruction (39 years old), but for me the flat feeling isn’t as weird feeling as I’d expected. You got this!
Hey Kat. Had bi lateral mastectomy September 23. My girls were pretty big. Day 4….feel light and ableto fly! It’s different but do-able!
Go girl
Early this year I found a lump on my right breast which led to a diagnosis in April 2024; ductal carcinoma in situ and invasive ductal carcinoma. My surgery, mastectomy and reconstruction will be this Tuesday, August 27th. I’m still processing it all but I also realize that my only treatment option at this point is surgery. I have two six month old puppies, Smoky and Ocean, whom I will not be able to take care of for a couple of weeks but they are in good hands with a friend. We need to get better to go on to live a life without cancer. A big hug to all.
I had invasive cancer in 2018 with a mastectomy and reconstruction from my abdomen. Went on Tamoxifen for 5 years.
Have just had local recurrence of cancer in the skin of the reconstruction so have just made the hard decision of having a mastectomy and removing the reconstruction.
Feel like I’m back at the start again.
Just advice for all having a reconstruction. Make sure they ultrasound the skin on your checkups. It is only a very small chance if recurring but still a chance.
Good luck to everyone.
Thanks for sharing your experience. That is good information to pass on to others. Wish you the best on this journey.
I had a double mastectomy on July 17 and and still healing mostly on the side that had the cancer. I am 73 and maybe that is why it is taking so long to recover. I still feel like I have an iron bra on. I, too, had a 5 month old puppy. She’s a cocker and super energized. I ended up board/training her for two weeks. I hope your healing is doing well.
GOOD EVENING LADIES..AS.I READ THROUGH ALL OF YOUR EXPERIENCES WITH HAVING OR ALREADY HAD YOUR SURGERY,.I FEEL SO MUCH BETTER KNOWING THAT I’M NOT ALONE..I’M STILL DECIDING ON HAVING THE SURGERY OR NOT)GETTING A SECOND OPINION FIRST) BUT WHATEVER DECISION.I MAKE I KNOW THAT GOD WILL GUIDE ME THROUGH IT ALL!!.GOD BLESS YOU ALWAYS AND I WILL CONTINUE PRAYING FOR HEALING AND MUCH STRENGTH FOR IN THE DAYS TO COME..AMEN
Hello ladies, I was first diagnosed in 2019, had a lumpectomy, chemo and radiotherapy all was well untill my yearly mammogram in 2022 when I was diagnosed with non invasive dcis, I got oncoplasty and had radiotherapy, August this year after having a sore nipple for several months I was told that my cancer is back so I having a bilateral mastectomy on Tuesday 29th Oct, can’t get reconstruction as i am on long term blood thinners due to blood clots caused by the chemo! So flat I will be but I’ll still be alive
How are you feeling now?? I’m going to get a mastectomy in Oct. and I may start the reconstruction process using my own tissue.
Just had my double mastectomy on 8/22 with tissue expanders. Chemo to start in five weeks then implants after chemo. Still recovering slowly and have gained weight since 🙁
Good luck to everyone going through this journey🙏🏽
I am 7 days post Double mastectomy with reconstruction with tissue extenders. Day 5 & 6 were challenging but today I’m feeling ok. The pain wasn’t as bad as I had expected. Now I wait to find out what my treatment will be.
God bless to everyone on their healing journey.
Thank you for sharing and I was just diagnosed with invasive ductal carcinoma last week after finding a lump in my right breast. This is my second cancer in that breast. Had a lumpectomy in 2017 with all nodes removed from there. Dr. says this is a different type cancer and suggest BL mastectomy. Interested in your comments on the reconstruction as I am on the fence about it. Thank you again and hugs to you.
I was diagnosed with DCIS with high markers. February 1 2024, double mastectomy April 2024 and reconstruction surgery end of July. SO worth the reconstruction!!! The tissue expanders not very comfortable 🥴 but feel whole again. The cancer diagnosis was a gut puncher, but faith in God and leaning on His promises , excellent surgeons and love and kindness of family and friends was a total blessing. And I am 66 years old.. ladies the reconstruction is worth it!! God bless you all and watch over you. ✝️💕. Hugs
Prayers you continue to do well. I am starting the same journey. God is good.
Did you do implant or diep flap
I had bi-lateral mastectomy September 18. I was on the fence about reconstruction and am leaning toward not doing it because of MORE drains; I hate the drains I have!😬😵💫
Besides, I’m in my upper 60s; boobs aren’t really needed now.
I had a partial mastectomy and bilateral reduction in September. My pathology showed the margins weren’t clear, so I opted for a bilateral mastectomy without reconstruction on 10/16. I didn’t want to go through any more surgeries related to reconstruction. Hopefully, my recovery process will go smoothly again. 4 drains is a lot more restrictive. Wishing everyone the best.
I’ve had a left side breast implant for almost 11 years. If I had the option to do over, I’d never have reconstruction again. Implant is being removed in two weeks. Has been awful since radiation after my second diagnosis of cancer. Would suggest having a prostheses is better in the long run. Good wishes to you and stay well?
Hi,
I had non invasive ductal cancer and had a lumpectomy and 28 days of radiation and Tamoxifen. That was 11 years ago. I was re-diagnosed this past July with invasive ductal carcinoma. I had 4 tumors stage 2 & 3.
I had a total mastectomy. It has been 7 weeks and I am still healing on the side that had the cancer. I also had a lot of scar tissue from the former radiation which means that I can’t have any more radiation.
I amER+, PR+. HER2-(low)
I have a bone density scan next week and then the oncologist will decide what treatment I should have next. I know that it won’t be chemo because of the +,+,-. I see that others do get it so it confuses me that I won’t…. NOT that I want it.
I am 73 and I have to say that I took the first cancer lightly because it was caught early and treated. Little did I know.
I wish you well.
I too am 73 and will be having a double mastectomy next week after 8 years and radiation treatments. Will find out if I need chemotherapy after that. I keep telling myself I did what I could with early detection but there are so many other factors. But, it is what it is.
Thank you for sharing. Gentle hugs for you. I’ll be going in for a double mastectomy and reconstruction soon.
Paulina – my prayers are with you. I had a bilateral mastectomy the 7th so almost three weeks ago! Getting stronger every day 💪🏾
I have just been diagnosed Monday, August 5, 2024 with stage 0 and stage 1 lumps in the left breast. By Tuesday I had 4 doctors appointments, followed by blood work, the next day a regular doctors appointment and more blood work.
On August 26th I will have a mastectomy on the left side with reconstruction and then come back to have the right side reduced to match.
I feel like this is my path to walk and help someone else on their journey. I took it upon myself a few years ago to start sharing my results of any appointment with family and friends which encourages them to stay aware and get checked out. All my ladies are making sure to keep me updated on their mammograms and more.
I have always supported breast cancer but now I want to come to others and say, “I too am a survivor.”
Janet Bell
July 31 I was diagnosed with invasion ductal carcinoma. Family history of breast cancer my mom, sister and 3 cousins. I’m brca neg. I’ve decided bilateral mastectomies. I just want it gone. I don’t sleep well anymore. Surgery is September 12. I’m going to have reconstructive surgery, either implants or the tummy tuck procedure. I don’t think I’ve ever been so scared in my life.
Wishing you well and a speedy recovery tomorrow for your surgery. I am scheduled 9/30 single mastectomy. May we both heal well! Ypsilanti, Michigan
Hello Terri,
I also was diagnosed with ductal carcinoma in April 2024, on both breast. It has been a rollercoaster ever since for me. I had a bilateral mastectomy on August 20. I decided not to do reconstruction, since I wanted to recover quickly. I feel better now. God has been with me every step of the way. I encourage you to listen to Psalms to sleep and focus on God’s promises to heal you. That is how I was able to cope. My prayers are with you.
I was diagnosed with DCIS and based on family history- mom, grandma, cousin – I decided that double mastectomy would be the best option for me. I opted for no reconstruction and although have also survived brain surgery, I feel more scared than I did then. I know I’ll be fine but this feels so different.
Hi Terri
I understand that this is such a scary journey you’re on but I’m responding to tell you that you have made the right decision about going the bilateral route. I made the same decision in 2005 (but without reconstructive surgery. I wanted reconstructive but because of other factors, I wasn’t a candidate) and I have never for a second regretted it.
You’ll be amazed how quickly you adapt to your new reality and what a relief it will be not to worry about breast cancer.
Evelyn
Terri – I was diagnosed on June 13th. Originally scheduled for a lumpectomy although I told my breast surgeon I wanted a bilateral mastectomy. Further testing showed that I was correct. I had prayed and that’s what I felt. It was almost six hours long, but there were no complications. I’m glad about my decision. I am scheduled for additional treatment and I meet with Oncology tomorrow and Thursday. Noone in my family has had Breast Cancer. I am feeling and knowing ALL WILL BE WELL!
WOW, that is fast. I was told I need surgery, and I have had numerous tests and biopsy for the last 2 months. My surgery is now scheduled for Sept 11. Can I ask what type of reconstruction you have decided on?
Thinking of you today!
Hi Janet, I was also diagnosed on 8-5. I will have a double mastectomy on 8-29. Prayers to you! We’ve got this!
Ive. Had a double mas
Hi Stephen,
I am also having a double mastectomy on 8/29. I was diagnosed July 25th. Sending prayers and hugs to all who are going through this. We can do this so don’t give up hope ever 🩷
I was diagnosed with invasive ductal carcinoma with globular features grade 2. I have decided to do a mastectomy. I was wondering what they do when they just take off one. You just answered my question. Good luck
Just had a unilateral mastectomy on September 19th, felt great for two weeks. Now into week three and feel stiffness and pain in incision area. My surgeon is not big on pain meds. He gave me 6 for the first week. The Ibuprofen and E.S. Tylenol are not cutting the pain at all for week three. Really stressed out. I was doing so well the first couple weeks. The drain isn’t bad if you have someone tape the tubing going downward for two inches so then it can’t move around.
Hi, Beth. I was just diagnosed last week with the same cancer, grade 2. I see the surgeon and have a MRI tomorrow. I was told that I’ll likely need genetic testing as I’m also HER 2 +. Might you tell me a little about your journey so far?
I am 77 y/o. In February I had my biannual mammography. There is no family history of beast cancer. I was surprised when my procedure was read as Rad V. The biopsy was scheduled for March. It came back positive for invasive lobular cancer, ILC. This one is known as the “sneaky” cancer; it spreads as a sheet and does not form lumps. On April 22nd I had my first lumpectomy; my right nipple had to be taken. The pathology report stated that clean margins were not obtained. On May 28th I had my second lumpectomy. A sentinel node dissection was also performed. Unfortunately clean margins were not achieved and the sentinel node was positive for metastatic cancer. I am scheduled for a right side mastectomy on July 16th. The original plan was lumpectomy followed by radiation therapy followed by hormone therapy. ILC does not respond well to chemotherapy. There will not be any radiation therapy. Once the mastectomy is over I will discuss a new plan of action with my team.I know I am strong enough to fight and beat this “sneaky” cancer.
Hi Connie and the rest of you amazing women, thank you for sharing! I was diagnosed with – “Invasive mammary carcinoma, grade 2, favor classic type lobular carcinoma – Associated in situ carcinoma, intermediate nuclear grade” in October 2024. The first plan was a lumpectomy and lymph node removal (for testing) followed by radiation and a hormone suppressing drug. After an MRI with contrast, my doctor identified other areas similar to the one biopsied, but deeper in my breast and although lymph nodes looked clean, will be tested as planned. I am opting for a mastectomy on my left side with reconstruction. 38 D at age 50, but was a 36 B/C before breastfeeding and lots of distance running. My paternal grandmother had ovarian cancer so keeping note of that for my genetic testing.
I am 76, had a lumpectomy in 2016 followed by chemo and radiation per doctors recommendation. In October 2023, I was diagnosed with radiation induced angiosarcoma of the breast. This cancer is rare and very aggressive. I immediately started chemo and had some success in reducing the size of lesions…then it rejected treatment and doubled in size. We tried several other treatments and found alternating helped. Finally, the surgeon felt like it was under control enough to remove the breast. I am 3 weeks out from that surgery, which was pretty radical, but healing nicely. Unfortunately, the pathology report came back showing some cancer remains in the margins.
Waiting mow to hear recommendations from a combination of opinions from the tumor board and research oncologist.
I try to warn anyone who has breast surgery that studies are showing more frequent cases of lung cancer, spine cancer, and angiosarcomas as a result of radiation.
I had a lumpectomy on my right breast in 2017. Two weeks ago I found a very small purple spot on the side of this breast. After a biopsy it was diagnosed as angiosarcoma. (Radiation induced) My surgeon wants me to have chemo, then a mastectomy of the right breast. I asked about having the left breast removed at the same time. She said she preferred to just concentrate on the cancerous breast. I am seeking a second opinion on this treatment. Not sure if this is the path others have taken.
Sue, I’m sorry, but it is almost a relief to read another person with Secondary Angiosarcoma of the Breast. Being so rare, I feel pretty isolated.
The cancer is 12cm x 10cm x 9cm (not deep like a tumor, but almost like a thick sheet over the entire breast, with extra depth around the nipple and areola.) Because of it’s very large size, high grade, and probable Stage 3 into pectoral muscle, I am receiving chemotherapy (#6 was today) The hope is to reduce it to a more manageable size of skin graft for the mastectomy. I am pleased and surprised with how well I am tolerating chemo. With the previous cancer I only had lumpectomy and RADIATION 😬. The Angiosarcoma was caused by the radiation, but is still a very rare occurrence. I would still have done radiation, given the rarity of this.
I have not met with a surgeon yet so I have a LOT of questions. Because it’s not technically “breast cancer” a prophylactic double mastectomy is not necessarily justified. But, I think I would prefer a “one and done”…just in case it were to recur in the other breast. Plus, at 67, I’d just as soon not be left with the lone “long” breast anyway!
Reading your story, I was struck by learning that your cancer stopped responding to the chemo! I was not aware of that possibility, not that it would have changed the chemo decision. It’s just something else to sort of be mentally prepared for in case it happens. I prefer to know the realities and face things head in. Yours is a new thing to ponder.
I want to thank you for sharing, and hope we can keep in touch.
Hi Connie,
I was recently diagnosed with the same lobular sneaky cancer. It was originally thought to be approximately 2cm. MRI showed a hair coming out witch makes it 4cm in 1 area. I’m going to have a lumpendectomy because I have big breast and they can work with that, reconstruction, and radiation. Not sure about chemo. Preop is August 27 and surgery is Sept.4th. Wondering how they missed so much prior to your original surgery? How’s your recovery been? Can you recommend anything I should have on hand at my house for after surgery?
Had my pre-op appt yesterday for my left breast ILC. My MRI also showed the mass isn’t 2-2.5 but actually 5-6 cm. The surgeon outlined my options with my original plan of lumpectomy & radiation now presenting itself as a “roll of the dice” as to whether it’s a one & done surgery. The prospects of potentially going through surgery again & again, ending up with a mastectomy anyway doesn’t appeal to me at all. My breasts are small (B’s) & by the time the area is removed there won’t be much left anyway. So I’m opting for a mastectomy w/ reconstruction (nodes so far look good so likely no radiation but they’ll be tested during surgery). Next appt is with plastic surgeon to discuss options for the left & matching the right side. Considering a double mastectomy. This type of BC is very sneaky. I had no symptoms whatsoever till an eagle eye radiologist caught it on my annual mammogram. My genetic testing shows no BRCA even w/ fam history. Also shows great prognosis with ultra low recurrence & metastasis. So that’s my story. I wish all here going through this the best. We can do this!!
Your story sounds very similar to mine! I hope that you have a wonderful surgical team, stay strong and recover quickly. My journey is just beginning…
I love all the sharing and helpful comments. My father’s side of the family is rife with the BRCA2 gene mutation. I procrastinated and finally got tested for the gene 12/2024. Of course I’m positive. 🤷♀️ Since my four paternal aunts have one breast between them, I didn’t want to mess around with it. I decided to have prophylactic bilateral mastectomy with immediate reconstruction. I had my surgery on April 24, one day before my 55th birthday. If not for my husband, I would have gone flat. I originally wanted them to use my own skin flap for the reconstruction but my dr didn’t do that procedure so I have the gel inserts, no expanders used. I told him to just put in whatever size insert fit into the area. I was fine with being smaller. My pain tolerance is low, but after the surgery I was happy not to have the additional surgical area. A week after my surgery we found that my right breast did have IDC and I had to have a second surgery to remove lymph nodes on that side. My oncotype testing showed me as low risk so I won’t be needing chemo. As my aunt said “you were standing in front of a train and your dr moved you out of the way.” I feel like I’ve done it backwards, remove breasts and then find out I had cancer, so I really didn’t feel like I had “cancer decisions” to make. 5 weeks from surgery and I’m feeling pretty good. Mostly I feel like I’m wearing the most uncomfortable underwire bra that is bunched up under my arms – and that’s when I don’t have any bra on. Having a recliner/reclining couch really helped with sleeping the first couple of weeks but I still needed someone to pull the lever to unfold it. My plastic surgeon wouldn’t allow any showers while I had drains so sometimes I would stand in the shower and my husband would sponge bath me. Also, I found that getting the gel bead eye masks worked great for ice packs in your armpit area and laying across the top of your breasts. They didn’t slide around like ice in a bag. And yoga pants needed me to pull and stretch them to get them on which I didn’t have the strength for. I went to the thrift store and bought 2 pairs of scrub bottoms and they were magic. I even wore them to the surgery.
Scrub pants definitely work best! Since I’m a nurse, I already had quite a few. If you need to buy some, get the ones with elastic at the ankle so you won’t have to hem them. I would put the drains in my scrub pockets during the day or when I had to go to a doctor appointment. My plastic surgeon allowed showers 48-hours after surgery, and it works best to cover the drain sites with waterproof tegaderm patches. I used the ones without pads to keep the insertion and surrounding sites covered while the drains were in. Then after the drains were removed, I used the tegaderm with the pads to cover the holes (along with some triple antibiotic cream) while they healed. You can purchase them off of Amazon and there are several brands, although I prefer the 3M tegaderm. Be sure to change the tegaderm every few days. And check the insertion sites to be sure there are no signs of infection. My husband got a large carabiner and put it on a small chain that I wore in the shower. I would hook the drains on the carabiner around my neck and it worked great. There were some comments about having clots or tissue when the drains are milked. This is totally normal as the body produces proteins in the area where tissue is removed. Keep the drains milked so they do not clog. Be sure to notify your physician if you notice an increase in blood as they should gradually become less red (not more).
I have had a biopsy that came back non cancerous. But, my biopsy came back as breast tissue with intraductal papillomas with columnar cell hyperplasia and associated microcalcifications. I’m at high risk for developing cancer. What will the surgeon’s appointment be like? Just generally. I’ve had 15 other surgeries so I’m no stranger to it.
I decided to go with bilateral mastectomy no reconstruction. Your tips are very helpful in preparation for surgery.
I had a double masectomy on April 4th. Similar situation. I call it medical mayhem. I certainly was expecting cancer to be on my medical list of having gone through several neuro surgery fights every 2 years since 2018. I started tamoxifen end of May. Best of luck!
Scrub pants definitely work best! Since I’m a nurse, I already had quite a few. I would put the drains in my scrub pockets during the day or when I had to go to a doctor appointment. My plastic surgeon allowed showers after surgery, and it works best to cover the drain sites with waterproof tegaderm patches. I used the ones without pads to keep the insertion and surrounding sites covered while the drains were in. Then after the drains were removed, I used the tegaderm with the pads to cover the holes (along with some triple antibiotic cream) while they healed. You can purchase them off of Amazon and there are several brands, although I prefer the 3M tegaderm. My husband got a large carabiner and put it on a small chain that I wore in the shower. I would hook the drains on the carabiner around my neck and it worked great.
I am 73 and 30 years ago I was diagnosed with Inductal carcinoma insitu. It was a pre cancer and I had young children, so I chose a lumpectomy with radiation. My mom passed away in ‘64 at the age of 39 from breast cancer. Fast forward to late Feb., 2024 and once again, thanks to an annual mammogram, they found Invasive ductal carcinoma in the same breast. Without hesitation I chose to have a bilateral mastectomy with surgery on March 20 and thankful that I did because when everything had gone to the pathologist, they found 2 more very small cancers in the same breast. I’ve never had any kind of major surgery and surprisingly it was very easy on me and I went home same day, just a couple hours after surgery because at my age I chose no reconstruction. Recovery has gone very well with driving a few days after. My oncologist is helping me make a decision about treatment because I am not a candidate for radiation again. Always remind your friends how life saving a mammogram can be❤️
I’m a few months behind you. DCIS 22 years ago, ICS now in the same breast. Had a partial mastectomy this time bilateral mastectomy. My mammogram was clear, but the follow up ABUS (because of my dense tissue) showed something “suspicious”. Certainly glad I did that follow up!! Surgery scheduled for Aug. 19. I will have reconstruction because there is this husband. 🙂
I 78 & my lump was picked up by my bi annual mammogram, so it’s known to be under 2 years. I just cannot believe that women stop having mammograms when they stop getting reminders, (Australia) which is early 70’s.
For your own health ring up every 2 years and make a appointment. I’m semi rural & we get a mobile come every 2 years so I get it easy for me.
I’ve just had my last of 6 chemos. Pretty rough still. I’m in for a double mastectomy & implants in a month. I have genetic BRCA1 cancer & this is the 2nd time I’ve had chemo. I will be at a friend’s place after surgery as I live alone. Is there anything IMPORTANT to bring, apart from the obvious? What painkillers will I need? Thanks x
Hi, I don’t have an answer but I wanted to reach out. My mum was diagnosed with BRACA 1 and had her ovaries out and then a double mastectomy. Due to previous radio therapy she ended up with necrosis and lost a nipple and half a boob. Forward to 10 years on and she’s having to replace her breasts and how they are inserted. This is causing anxiety due to what happened before. But to this day she will still insist that it is all better than having possible breast cancer hanging over you and it’s all worth it. You may be going through a lot but as my mum says – it’s worth not having to worry and live with eggshells forever. It’s all worth the peace of mind in the end. Be strong and I’m wishing you all the best for your recovery x x x
This is all great information. Just got the call that my biopsy results are IDC. I meet with the surgeon on Thursday to discuss further. I pretty much have it in my mind that I want a double mastectomy. Doing as much research as I can. I have ZERO family history of breast cancer so this has blind sided me.
Hi Mandi, same here, no history in the family. I did have a lumpectomy in my left breast for calcification in 2018. Had frequent mammograms. Last August, I started getting a burning pain along the biopsy route. I went for a mammogram even though I had one in March, and I was a bit scolded to the fact that there is no pain when it’s cancer. I am grateful that it wasn’t cancer at that time. A few months later, my nipple and side that was hurting started retracting inwards. I was going to have a shoulder replacement on July 11th…so my husband and I took a week vacation the end of May and moved all my appts to the week we got home so I could concentrate on that surgery. One of my appts that I switched from August to June 8th was my mammogram. June 19th, I had to go back for ultrasound biopsies in both breasts. At that point, the same Dr. that previously scolded me
told me to cancel my shoulder surgery that I’ll be busy taking care of “this.” MRI was next and then the Surgeon. My left breast had grade 2/3 IDC and my right with calcification and ALH. I’m going for a double mastectomy with a reconstruction this coming Wednesday.
Am I nervous? Absolutely! But keeping my mom and husband from worry, I have done an injustice to my internal well-being. It seems like my body is fighting from head to toe, literally. My vertigo is back, my GI (I have Celiac) is screwed up, my liver and kidney have small cysts, I still have that bad shoulder and even my big toe is infected. In all of this, all I wish for is that I wake up and they got it all. Everything else is gravy.
My apologies for the long story.
I’m just tired of the pity looks and apologies. I’m still me….taking control!
Funny how we want to protect our children and husband from how we are feeling emotionally. We have every right to be scared and worried but push it down for the benefit of others. I am 68 and otherwise healthy. I was diagnosed with DCIS in April 2024. It was discovered quite by accident in a CT scan for kidney stones. Had double lumpectomy June 27 that revealed a second DCIS that was a different kind than the first one that was biopsied. I am having a bilateral mastectomy next week. My stomach is upset every day. I’m having trouble falling asleep and staying asleep. My brain has accepted the surgery and I seem carefree and brave. But my body knows me better. Thankfully my faith and support from beautiful women in a Bible study group has been very helpful. And the conversations here are beyond comforting. Thank you to every post here. You never know who you’ve helped by posting in this forum but I can tell you it has helped me!
Scold that doctor for telling you that there is no pain with breast cancer. I believed that too and “sat’ on a painful lump that appeared suddenly out of nowhere assuming it must be a cyst or an abscess. It turned out to be a very aggressive form of triple negative breast cancer. The myth that cancer doesn’t hurt and cancer doesn’t grow fast has to be dispelled!
Hi Mandi..
I just got the news Today about the same diagnosis! I am still trying to believe it & am probably reading too much.
Would you please tell me what you have been through?
I’m interested in how you are now.
It’s Friday so I won’t even get calls back from Oncologist or Surgeon ’till Monday.
I’m most curious about how fast things moved along forcyou.
I’m leaving in the am for a trip and wonder if they will want me to come in fast or if I can take the 10 days I have planned.
Thank you all in Advance.
– Suzy
Hi Suzanne,
I just had a mastectomy on Saturday.
I was diagnosed on 13 March 2024, and was advised that I should start my treatment no later than 12 weeks from date of diagnosis.
I managed to go on holiday with my sister’s in May. I did alot of research and got a second opinion,before I finally made my decision on the way forward. Good luck
My story is much the same. No history of breast Cancer in family. Mine was caught early, & lumpectomy was an option, but I am choosing a bilateral Mastectomy. My only issue, so far, is that I was diagnosed Feb. 6, 2024, and have had far too long of a wait, IMO.
I am finally have surgery this Wed., May 22, 2024.
Mammograms save lives!
I hope your surgery went well. How was the recovery period been?
Hi ladies,
J.R., I hope your surgery went well and was successful. I am happy to have come across this forum. I was blindsided with a diagnosis of DCIS on May 7. No history of any cancer in my family. I will be getting a mastectomy next month and I have so much anxiety about the surgery and the after effects. I don’t know anyone that has had a mastectomy and I just want to know what it’s like afterwards, and what to expect. Good luck to all on this journey!
A couple more thoughts… The drain didn’t hurt per se but felt really weird and lumpy under my skin, and stretched everything tighter so it did contribute to the overall pain in a way. When the surgeon took it out at my 1-week follow up visit, I immediately felt better. As for the chest itself, it was mostly numb and most of the pain was under the arm where lymph nodes were removed, so if you don’t have to have lymph nodes removed I imagine the pain is much more minor. Lastly, don’t be afraid to ask for help with anxiety. I was so anxious after my diagnosis that I asked for something to take the edge off, and a low dose twice a day regimen of buspirone plus seeing a therapist made it like 90% better.
Saschelle,
I had a mastectomy on May 8, right side only. Here is the best resource I found on what to expect afterwards. https://notputtingonashirt.org/surgery/#afteryoursurgery This site is geared toward people who are having an aesthetic flat closure rather than reconstruction (which was my choice) but I understand the expectations for post-surgical recovery are similar for any mastectomy. If you have an immediate reconstruction at the time of the mastectomy, I understand the recovery is just longer. My experience was that the waiting and anticipation was the worst part (I already have anxiety issues.) I woke up in the hospital feeling pretty good, probably because they gave me painkillers and anti nausea meds via IV during surgery. The day after was the worst for pain. Take a big dose of Tylenol or whatever you’re on before leaving the hospital if you have much of a car ride to get home, because going over bumps in the car hurts. Pain was manageable for me with just Tylenol, although I was sent home from the hospital (one night stay for observation) with hydrocodone in case I needed it. Fortunately I had good support at home (waited on hand and foot) because I would have needed the stronger painkillers if I had to make even simple food or wash dishes. I was able to wean off Tylenol after about two weeks. I have had some phantom pain and itching sensation in the missing breast but it’s not too bad. The biggest surprise to me was how tired I was (and still am) after surgery. I’m only 41 and my surgeon said I could go back to work after two weeks. Well that was probably true from the standpoint that I have a desk job and the wound was healed enough, but thinking all day and then coming home to a 7-year-old is harder work than I realized previously, and I couldn’t make it through a full day. A month out, I am still at 25-30 hr/week. Also I didn’t realize how long it would take to regain range of motion in the arm on the surgery side. I can only raise my arm to 90 degrees in front and maybe 60 on the side before it makes the chest muscles feel very tight and painful. I just got a referral to physical therapy, so hopefully that helps things along. This is just my experience and it’s different for everyone, so take it with a grain of salt and check out that website for a more comprehensive guide. Best wishes for a successful surgery and easy recovery!
Saschelle,
I just went through a double mastectomy and I am on week 5 post op. I was diagnosed with stage 1 invasive ductal carcinoma. I too was very nervous and had high anxiety about my surgery. First off, read articles ahead of time about what to expect post surgery. I was sent a list of 17 items that prior patients found helpful in their recovery. Awesome info! These things you CAN control before surgery. Very helpful in easing my anxiety. The pain medication is always helpful the 1st week. The anticipation was the hardest part. I found a wonderful therapist who deals only with cancer patients. I had 4 sessions with her before surgery. It made all the difference in how I managed and responded to the surgery. Prayer, meditation and support from loved ones made all the difference for me. Your own inner spirit, your own resilience will carry you through your own cancer journey. Get a journal and write down all your worst fears prior to surgery. Then counter those statements with empowering affirmations. You can and you will get through this. Stay strong!
I just went the left breast mastectomy it wasn’t as bad but went to my sister a retired nurse to take care of me anyone needs to talk my email above still painful but always God is with me
You just had one breast removed and no reconstruction?
Good Luck!
I was diagnosed yesterday with invasive ductal carcinoma. I just feel like I want this cancer out of me immediately. I would start chemo today if possible. I know we have to wait for more pathology before deciding on treatment. The waiting is the hard part.
Hi Mandi,
I was so glad to read your comment because I am in the same boat.
I too have no known history of breast cancer and I am totally blindsided myself. I haven’t told my adult children or family members yet as I don’t want to upset anyone before I have all the facts and complete the many doctor appts. It’s easier to copy without everyone’s emotions playing into my decision. I intend on meeting with my holistic practitioner on May 25th for his input as well but, I too am intending on a double mastectomy with the purchase of a prosthetic bra. I’m turning 53 in Aug and I just want to be around for my children and grandkids. God bless and keep you safe.
I did the same thing with my adult children. My surgery is in 2 weeks.
I know how u feel. I had a bilateral mastectomy on April 4 2024. I have a lot of cancer in my family. And seveveral biopsy’s on both so that’s why I did a bilateral. I also have the atm cancer gene. Just waiting on my test results if my numbers r low enough not to have chemo. What I did I prayed for the best but I prepared for the worst that helped me w the stress. Good luck to you and god bless❤️
Hi Candy, thank you for sharing. I am too having a bilateral mastectomy next week. I am BRCA2 positive.
How is your recovery going? I am 33 yo so I’m hoping my recovery is smooth. Any tips are most welcome. Thank you.
Wishing you the best of luck on this journey. My story is identical to yours. I just had a bilateral mastectomy in April and currently recovering. I am having issues with the arm that they took the lymph nodes out from but hopefully this issue passes soon.
But I also have no family history of this and this is completely new to me. Still learning daily.
Wishing you a speedy recovery and a great report after surgery if that is what you choose to do.
I too have zero family history and was blind sighted. Terrified doesn’t explain what’s going on in my head. Praying for us all to be strong.
I was diagnosed with IDC 2 weeks ago. I have chosen to have a double mastectomy. I met with the breast surgeon on yesterday and will me with the plastic surgeon on Monday. I had no immediate family history of breast cancer. I never saw this happening to me. I don’t think it’s fully set in what I’m about to go through but, I’m putting everything in GOD’S hands as he guides my surgeon’s.
Trina,
I was diagnosed with invasive ductal carcinoma yesterday. I have no family history of breast cancer, and this really hit me out of the blue. I found a lump, but I’ve always had lumpy breast and figured it was nothing. I am having a hard time with the unknown. I am only 1 day into my diagnosis, and I am ready for a plan of attack. I know God is in control, and I have to relinquish my control for his.
Trina,
Same with me. What did you decide to do?
God bless you! I had the same. But I have one thing to tell you. Pray for the best but prepare for the worst including when u can remove the bandages prepare urself of what it looks like
Just has my surgery April 22. At home resting and recovering. You are right nothing prepares you for what it looks like. The scare that I have shook me. I’m glad to be alive and my lymph node screening is negative. The pathology report is still out.
While waiting for my bone biopsy results to come back, I found a lump in my right breast while being checked with MRI one was found on my left breast that did not show up on my mammogram. Now I’m preparing for a bilateral Mastectomy. Just reading some of your stories gives me a piece of mind.
Thank you for sharing your stories and I pray that we all have amazing outcomes.
I just got the results from my mammo and it’s BI-RAD CATAGORY V so I’ll be going for a biopsy soon, and I’m settled in to the fact that it’s very likely malignant. I’m with you and am thinking about a double mastectomy and have started researching. I might be jumping the gun a bit, but I want to be prepared.
That is the main thing to do. Be prepared for everything
I can’t thank the Lord enough for the resources out there to prepare women who face breast cancer. Im a single mom, 38, and have invasive ductal carcinoma. It went untreated for a year because no one took my concerns seriously enough to get a referral for a mammogram. I was under 40, had no known family history of it and so no one thought it concerning. After throwing a fit at the 3rd Dr’s office I went to (changed primaries 3 times to get a different opinion), I was finally heard. I just finished chemo and am scheduled 3/13 for a right breast mastectomy. Im scared but your stories and suggestions have helped me prepare for this. I am ordering the drainage pouch and shower set today as I didnt even consider that as something Ill need, but it makes sense. Thank you to the foundation for the wonderful information Ive found, and to everyone who posted their stories. It helps people like me prepare for the surgery, but more importantly, it offers hope. Many blessings to all of you and for those currently fighting, stay strong!
So many inspiring stories! I am also 37yrs old, single mom and diagnosed with ICD stage 2 lymph nodes positive. I am scheduled for bilateral mastectomy with lymph node removal. I have medical experience which been very helpful about being patient advocate. Best wishes and recovery to everyone.
I too have IDC and am a mother of five. I was diagnosed at 37 10/5/23. A year prior I was denied an mri due to age and history and was told to wait six months for another ultrasound. Six months Iater I had stage 3 IDC. I had high dose Ac-taxol for four months. As of 4/2/24 I had a mastectomy on my right, no reconstruction. I’m three weeks out from surgery. My biggest tip for you is to please have someone with you at least for two weeks. Have a friend or family member stay with you during that time to help with drains, your pain meds and your bandages. With children, it was crucial having help. My hospital gave me a lanyard to hook my drains on for showering. I was also given a compression bra with hoops to pin my drains to. Buy extra if you can as you will be wearing them for several weeks. Use a blow dryer to help dry your body and surgical area after showers. Remember, don’t rub, dab. I experienced pain and still do three weeks out so alternate your Tylenol and ibuprofen. Buy pads to put over your surgical site. I still do for a cushion to protect my wound. Try to go easy. I jumped right into my physical therapy exercises just two days after surgery and regretted it! My surgeon suggested “T-rex arms” for two weeks and no lifting arm above head until 4-6 weeks out. If you have a port, ask to get it removed time of your surgery- one less thing to worry about. Button up shirts were great to have the first two weeks. Get yourself slip on shoes if you can. I was worried about having my drains removed. Don’t worry, it doesn’t hurt and what a relief getting them out. A tip for “milking” your drains- get an alcohol pad and use that to help squeeze fluid down your tube. If you can’t get alcohol pads use hand sanitizer. I wish you the best of recoveries. We can do this sister.
Hello, I’m having a unilateral mastectomy on July 30th & would love your input on a few questions I have, if you don’t mind?
Thank you so much. I am facing a mastecomy within a month. This is such good practical advice. It really helps.
kay
Just has my surgery April 22. At home resting and recovering. You are right nothing prepares you for what it looks like. The scare that I have shook me. I’m glad to be alive and my lymph node screening is negative. The pathology report is still out.
Thank you for the practical tips
I was diagnosed last August 2023, with aggressive invasive breast Cancer, with 8 lynodes involved. Of the left breast. I’ve had MRI’S, CAT SCANS, and did 4 rounds of “Red Devil ” chemotherapy, and 11 rounds of Chemotherapy, I just could not do the last 3 rounds. It took too much out of me. My surgery is scheduled for June 25th 2024. These comments have given me hope. I have a great team of doctors, family and friends that support me. Thank you all for sharing.
Good luck 🙂
Hi, may I ask for resources of what tops one can wear after a double mastectomy and then after reconstructive surgery? I want to support someone very close to me who will be going through these in a couple of weeks. Can someone please send me online shops I can purchase from the links to styles of what she can wear after both? Thank you!!
I orderedmy shirts with inner pockets from Amazon and Walmart. They are very soft. I also ordered a robe with inner pockets. My surgery is going to be7/25/24. I have been doing lots of reading and planning to get ready. Forums like this are very helpful. Good luck to everyone. I have an awesome family and friends support group. And remember, God is always with us in every struggle.
Hi I had double mastectomy last month, they will put a bra on her after the surgery, You can get her one that open the front and no wire underneath , check Amazon they do have some good luck 🙏
Hi, I had my mastectomy on 12/28/23 left breast removed. I researched
online to find tops to hold my drain bulbs (2) of them. Go to the website. healincomfort.com I have really loved this ladies tops.
I see several people asking/contemplating double mastectomy, so sharing my experience as I just had it done last Wed. (Feb. 7, 2024). I was first diagnosed with Stage 1 invasive ductal carcinoma of right breast in April of 2022 at age 40 (estrogen & progesterone driven). After going through lumpectomy with reduction as reconstruction & radiation (lymph nodes clear), my mammogram the following April came back clear. In Nov. that same year (2023) my ultrasound showed atypical ductal hyperplasia in same breast. After excisional biopsy, was upgraded to Stage 0 ductal carcinoma in situ. I had no history of breast cancer in the family that I knew of and had comprehensive genetic panel test done that came back negative for known gene mutations that could cause cancer. I eat well, never smoked, and am an active individual that runs half marathons & plays volleyball. As I didn’t make it even 2 years without getting a second cancer and organs & bone scan done through CT scan came back clear, I made decision to have bilateral mastectomy to avoid future occurrences that may not be caught at Stage 0 & need chemo. I have found comfort in looking to a future of having reduced chance of recurrence vs. all the imaging & biopsies that may come anytime something suspect shows up. I had my mastectomy surgery on Feb. 7th as an outpatient surgery with two drains. Best Amazon purchase I’ve ever made was a drain pouch/apron & shower lanyard set. Front zip cotton hoodies & comfy, loose fitting workout pants have been awesome. I was fortunate to be candidate for nipple & skin sparing mastectomy & tissue radiated before was healthy enough for direct to implant placement. I focused on strengthening my core & on yoga prior to surgery which has helped me be able to get up & down out of recliner & now bed with minimal strain on arms & chest and squat down without bending over to still pet my kitties which take shifts in my lap. My husband has taken on all the housework & helping with medication schedule & emptying drains those first few days. Days 1-3 were rough. Felt like heavy, dense objects where breast tissue had been and hurt. Pain meds caused terrible headache & chills, but that’s how I seem to react to narcotics, so came off completely on Day 3 & used only extra strength Tylenol (have a higher pain tolerance). However, day 4 was a turning point and things are starting to feel a lot better and adjusting to new body. I’m in much better spirits than I actually had anticipated. I tire easily and nap when I need to. So far, no regrets on the decision. Hope this helps someone contemplating bilateral mastectomy as one of their options. I know reading other peoples’ experiences helped me a lot to carefully weigh out my options and choose what I felt was best for me and my goals.
Your journey sounds very similar to mine. I am two years out. Should you decide to go back to sports, take it slowly. I returned to tennis as soon as I was allowed to! Your muscles will feel completely different and it can be frustrating trying to do things too quickly. Take your time. After two years, I am still feeling as though there are things I cannot do. Your shoulders and chest walls will take time to heal! Give yourself a lot of slack and be gentle!
Thank for sharing, just got my biopsy results April 3 and have the same cancer also on my left. I will be seeing a surgeon doctor on April 30, I am at a lost, no family history of breast cancer, the first to have it…my daughter sent me this link and am so thankful for you and others for sharing your experience.
Hi, I just found out on March 26 that I have DCIS in my left breast, they call it grade 2 of 3 and grade 3 of 3. I don’t know what those numbers really represents other than thinking it’s bad when they use invasive word. I had an MRI done last April 4th and they found multiple suspected sites in my right breast that weren’t present in my Mammogram in December 22, 2023. They recommended bilateral surgical procedure. I am leaning in doing double mastectomy but after reading some risk after having mastectomy I am now really undecided on which path to go. I should be hearing from my Doctor soon and I will be asking a lot of questions. I am also very active and afraid of things that I may not be able to do after double mastectomy. I also have a toddler who’s turning 4 in May, so, she is very active and keep me very busy. I’m still waiting for my genetic test result. HOPEFULLY it will be a good news this time. Reading your story alleviate a lot of my worries. Thank you so much for posting your story!
God bless you!! I also just had a bilateral mastectomy on April 4 2024 . I am glad I made the right decision
Thank you for taking the time and writing about your experience. My diagnosis is the same as your first, but I also have a few spots behind my cancer that came back as benign in a biopsy. The radiologist doesn’t seem to believe that is negative from how it looked on the US and MRI so he suggested a third biopsy. I have been going back and forth between oncoplasatic lumpectomy and double mammogram and your story has helped me to decide on a double mastectomy. I am supposed to let them know by Monday. Thanks again and I hope the rest of your recovery goes smoothly.
I forgot to attach the link for the mastectomy pillow. Here it is:
https://www.amazon.com/Mastectomy-Post-Op-Chest-Pillow/dp/B00EE84FNC
I was given one of these from Zomaple – didn’t think I’d use it much but its a godsend when you get back to driving! https://www.amazon.com/Zomaple-Mastectomy-Pillow-Reduction-Augmentation/dp/B0B62942S9/
And this waist belt for holding the drains came with a shower bag and were terrific – saves messing around with clipping things to lanyards which is what I’d planned to do.
https://www.amazon.com/Post-Surgical-Drain-Belt-Pockets/dp/B08N85HZH3
I highly suggest a mastectomy pillow like this one. It holds ice packs and allows your underarms to rest on a pillow. I had a double mastectomy and 17 lymph nodes removed under my right arm and this really helps that side. Some of these style pillows also come with drain holders. If not, I used a lanyard to hold my drains. Best of luck to you.
Thank you for sharing. I got a diagnosis of ductal carcinoma in situ on February 9th. I am scheduled for a double mastectomy on April 23rd.
Hi I am scheduled to have double mastectomy next week. I would like to check if any of you can recommend a good electric recliner.
Many thanks!
I was diagnosed with close to same cancer in Feb. A Mri showed another mass close to the first one. My Dr is encouraging me to to do a full mastectomy. It looks like beginning of May. Thank you for sharing your experience. It has helped me.
Thank you so much for sharing. I am newly diagnosed with the same cancer and just stating treatment. Your situation sounds very similar to mine and reading your story has helped me make a better decision regarding my treatment.
I so needed to read your comments today. I am contemplating the double mastectomy. I am a marathon walker, I am otherwise in fantastic health and no family history. I have had several very invasive biopsies (every 6 months) thank you for sharing your experience. I wish you the very best. Laura
Thank you for sharing this really helped me.
Wow! Thanks for sharing. This is so helpful. I am having a double mastectomy 3/21.
Thank you so much for your comments; they have helped! I am 80 years old and rather nervous about my upcoming surgery. I will have a bilateral mastectomy as invasive lobular carcinoma will often occur in the other breast. I’m just not certain about reconstruction at my age. Thoughts?
I had a Tramflap 33 years ago. Looks natural, difficult recovery.
I’m having the other breast removed in a few months and plan to have fat grafting. Look it up online. liposuction will harvest the fat. Not much pain nor chances of rejection. Fingers crossed.
Heather
Thank you for sharing your experience. I too will undergo a bilateral mastectomy with reconstruction on March 26, 2024. I researched extensively before making this final decision. I did have a couple of lumpectomies. Dealing with the possibility of cancer recurrence my husband and I felt it would be best to remove both. I really did not want to go through radiation treatment and the estrogen therapy process. Praying for your continued recovery.
I was just diagnosed Friday, 2/23/24 with the same type of cancer. I would like to have a bilateral mastectomy. I have breast cancer on both sides of my family. This really helped me. Thank you so much for taking the time out to help others.
Really helpful advice – thank you so much for sharing. I have DCIS in my left breast and I am considering a double mastectomy , so this has been a really informative read. I wish you all the best
I recently had bilateral mastectomy on February 13, 2024. I was diagnosed with stage zero ductal carcinoma in situ in my left breast. I decided to do both because I was worried about having to go in every year to get my mammogram and wondering if this is the year I will be diagnosed with cancer in my right breast. During surgery, my surgeon found cancer in my right breast as well. It was an invasive cancer that is very hard to see in screenings and it was missed. Thank God I decided to do the bilateral because otherwise, the cancer in my right breast would have continued to grow. I hope this helps with anyone wondering if they should do a bilateral mastectomy.
I have DCIS in right breast and had lumpectomy. Margins came back with much bigger area, still non invasive but one small dot of invasive. I and am scheduled for unilateral mastectomy in 4 weeks and now having second thoughts on should I do both ?! Original plan was to do spacer and then diep flap in 3 months and reduction in the “good” breast. No prior history in my family and I’m totally shocked that I’m even typing this ….prayers to everyone 🙏🏽
Thank you to everyone here for sharing your stories. Connie, yours resonated with me, as I was also recently diagnosed back in February, and am awaiting my surgery date for a double mastectomy. My mammogram came back abnormal with two lumps in my right breast stage zero and stage one DCIS and IDC, which was going to result in a lump ectomy with radiation. My doctor wanted me to move forward with an MRI to make sure that there were no surprises during the lump ectomy surgery and unfortunately something showed up as an area of concern in my left breast. After having a diagnostic mammogram and an ultrasound on my left breast, nothing showed, so we moved forward with MRI biopsies. They also found a small 3rd lump in my right breast that wasn’t detected on the mammogram or the1st ultrasound! It’s just so crazy, but thank God the MRI picked up on something, because like many of you have mentioned, unfortunately, I probably would’ve found out six months or a year after my lump ectomy on the right side that I also had breast cancer on the left side. I’m 53 years old; not a smoker, not a drinker… fairly healthy. Reading these similar stories is such a comfort, knowing that I’m not alone. We’re all part of this club that no one wants to be in, but we have a great support system in here. Lots of hugs to all in here who are going thru this.
You are strong and your decision found perfect. Am diagnosed same like yours and thinking to decide how decided- removing both at a time. Can you please tell me how long it took to heal out both? Your tips was very helpful and encouraging. Thank you and take care
My wife is having a bilateral mastectomy February 13, 2024. I have most of the mentioned beneficial items for when she comes home. What I’m having a hard time finding information on isn’t so much how to take care of her physical needs, but her emotional needs during all of this. How much pain will she be in? She opted to go flat with no reconstruction. Also, as a caregiver, are there any suggestions for dealing with your own feelings/emotions? I am much more emotional about this than she is, but not because she is losing her breasts, if that makes sense. I don’t dwell on it, but there are times when the thought about what’s happening pops in my head and I get so emotionally overwhelmed.
I hope all is going well with your wife and she’s recovering nicely. I too had a double mastectomy no reconstruction. I’m sure you are doing great supporting her emotional needs. I believe that in itself, is one of the important things to have after surgery – someone just to be there for us. Sometimes all we need is just someone to hear us and yes physically help us when needed. Radiate positivity around her and remind her that she will feel better soon. 🙂 And make sure you take time for YOU throughout your days because it can be overwhelming for the caregiver also. Sending good vibes to you both. 🙂
Just had a mastectomy Feb 20th, no issues, no pain, some swelling, did have reconstruction done, and again no pain,, was given oxycodien, have only taken 7 since surgery. Holpe your wife does as well. I am 66
that’s great. I hope I have the same experience. thanks for sharing.
Thank you for reaching out with this question! We’ll be keeping your wife in our thoughts as she undergoes her mastectomy next week. We have a free downloadable resource, The Cancer Caregiver Guide, that we think will provide you with some good advice on caring for your wife’s emotional needs, as well as your own needs as a caregiver. You can download the free guide through this link:
https://www.nationalbreastcancer.org/resources/caregiver-guide/
We hope this information is helpful to you!
I have surgery set for April 9,2024.Am not sure what to expect and if there is anything that I will need to buy to prepare for this day. Double Mastectomy’s. Please informed me if there is anything that I need to help with this process.
I just had a double mastectomy and the greatest thing for me was my daughter bought me a shirt that I could put the drains inside pockets on the inside of the shirt. The drains are painful. Take your pain medication for at least two weeks. I also asked to take gabapentin- it calms down the nerves a lot as they were healing. Also take a pillow with you to go to your office visits- my husband seemed to hit every pole in the street on my way to the doctor. That was painful. I still have in my expanders to stretch the skin so the doctor can put in my implants soon. They keep me from sleeping at night. My good news was from the oncologist- I don’t need any radiation or estrogen treatments, that the cancer should not come back, so good luck to you, it will all be OK.
I have surgery (double mastectomy and reconstruction) soon but the doctor told me that is all ambulatory. That I could go to my house the same day of the surgery. Does someone know if that’s normal??
I would research the best ways for sleeping. I had rotator cuff surgery on my shoulder and at that time I purchased a recliner which was a lifesaver. I had a left breast mastectomy on Feb 14 and opted to buy another recliner. It has electric controls for getting in and out so it makes it easier and less painful for getting up and down. I found it comfortable to sleep in as well.
My friend who had a recent mastectomy got a sleeping system from Amazon called something like “angel system”. She swears by it.
Best of luck and good health.
I had a double three weeks ago. If you don’t have recliner or an adjustable bed frame you will want a bunch of pillows. I bought a wedge pillow from Amazon which came in handy. Hospital gave me split drain sponges so be sure to ask for some. Alcohol prep pads for stripping the drain tubes. Shower stool is nice to have for the first few showers if you don’t already have a shower with a bench. A couple of soft button down shirts. Be sure to put a lightweight bed pillow in the car to place between you and the seatbelt for the ride home. I got a cheap one from Target. Wishing you a speedy recovery.
Hello Shelly,
I had a left side mastectomy on February 5, 2024. there is such a thing that is called AWS,(axillary web syndrome), or cording, which can happen after removal of lymph nodes. I knew nothing about this and now I am dealing with the repercussions. I am working desperately to find physical therapy and looking for exercises on the Internet presently. I would strongly suggest speaking to your surgeon about this before you undergo surgery so you are prepared and have it written out so you can read it and be ready for the exercises when the time comes. I have had moderate to strong pain with this and has limited my range of motion severely. The rest will be just fine as long as you follow the tips above in this blog.
Hi Shelly! We will be keeping you in our thoughts as you approach your surgery date. We encourage you to read through this blog post, as well as the comments section, for recommendations on what you may need to purchase and how to prepare for an upcoming mastectomy. These recommendations come from experts and women who have had mastectomies themselves.
My mother will be having a double mastectomy in the near future, is there any advice on how I can support her? She is very independent and hates asking for help. Any advice welcome.
You mother is going to want help, it is not a joke the recovery. She will need to everything at eye level. She can’t open car door to get in or out of car. You will have to put on seat belt for her. No bending over but must squat to get something. No lifting not even a pet. The body is tricky I adjusted to the pain felt I could be a little more independent around the house. Wound up in the hospital 1 week later post op with a hematoma. My right side swelled up and my drains were filling with blood. She needs to take it easy for her own self to negate surgical intervention if she doesn’t.
I came across this website tonight and so glad I did. I am scheduled for surgery Feb 22 left breast mastectomy. I am awaiting genetic testing to see if I have the BRCA gene. If so I will have double mastectomy. I had breast cancer 30 years ago when I was 39. Had a lumpectomy and radiation and now again in same breast. So scared and debating a double mastectomy even if genetic test is negative. This is so scary and do not know what the right decision is. Any thoughts would be helpful.
Katherine,
My 1st bout with breast cancer was in 2000, I had a lumpectomy and life was good until 2020 when I had another breast cancer in the same left breast. A lumpectomy was performed, and I regretted not having the breast removed. I pretty much had a third of my breast remained and that played horribly on my mind bc the prosthetic kept shifting to the right. I also had the BRCA test done. I am HER2 Positive. It was caught early and no chemo or radiation was required.
Present day, I had breast cancer for a 3rd time but in the right breast. The biopsy showed HER2 positive so I decided the have a bilateral mastectomy on March 4th 2024. I came home with 3 drains. The pathology report confirmed HER2 Positive but there was another cancer in my left breast which they believe was from the 2020 breast cancer.
I guess what I really want to let you know is that I could not be happier with my decision to remove both breast. I know that with my HER2 I have to be on top of things even more than I had been. But my decision to remove them has been one of the best decisions I’ve made.
I will see the oncologist on the 25th to discuss a game plan of treatment. I do look forward to this appt., but not the thought of IV chemo. My veins are shot and they would suggest a port. UGH 😣
Wait to get your BRCA results and ask every question and read everything related and keep a positive mind and you will get through this
Prayers are with you🙏🏻🙏🏻🙏🏻
I was diagnosed day before Thanksgiving 2023 and after several MRIs and two biopsies I am finally scheduled for bi-lateral Mastectomy on February 15. I have been back and forth on the decision Lumpectomy vs. Mastectomy. Follow your gut but after the things I have read and researched and the fact that I turned 60 years old in December, all made me feel good about opting for the Mastectomy. I have been very big chested my whole life 44DDD to flat closure with no reconstruction will be a very different reality for me. Every day the emotions change from Fear to Strength and then asking why? and then back to feeling like a Warrior and trusting this journey, laying it all at the feet of Jesus. I am thankful for all the ladies that share their feelings and their journey on here and so glad to have found this website. I wish you ALL the very best.
I also wanted to ask a question. My surgery is set for an outpatient same day. I’m wondering if that is something anyone else has been through. I am having both breasts completely removed, and both my armpits have excess breast tissue so both armpits will also be undergoing removal /surgery stiches. It doesn’t seem right to be sent home on the same day.
If anyone would share the details of how long after surgery they went home or if they had a hospital stay, how many days. I would greatly appreciate it.
I am also scheduled for a double mastectomy in March. The doctor said I would probably stay overnight, but most go home the same day. I have been back and forth on doing this, it scares the heck out of me! Not upset about losing my breasts, but if the shoulder and neck pain I have been reading about. Have you heard of this?
I had a double mastectomy three weeks ago. I didn’t have any neck or shoulder pain. I have had back pain which I was totally unprepared for.
I had a double mastectomy three weeks ago. I didn’t have any neck or shoulder pain. I have had a back pain which I was totally unprepared for.
I am having my right breast removed in February. Can anyone tell me even though I have tubes, am I going to leak? Should I be sleeping on a pad? What have you found the best position to sleep is? Do I really need a wedge? How many drains should I expect?
Do not worry, you will not leak. I chose to sleep in half sitting position on the couch, with bunch of pillows for support. I had bilateral and I had four drains, two on each side. Best wishes and lots of positive energy your way. Everything will be all right.
I just had a double mastectomy with reconstruction. I had stage 1 grade 2 idc in right breast only, but decided on double to hopefully alleviate fears of more cancer later. I have not leaked from either of my tubes. I do not sleep on a pad. I sleep in the bed on three pillows, with my head elevated. I don’t think my sleep is as good quality as sleeping on my side, but its okay for now. My drain tubes are in for 8 days so far. I have no problem moving my arms, but am not allowed to shower yet. You can do this! I’m having relatively no discomfort at this point and everything looks good. Just follow doctor’s orders. Best of luck to you!
Wow! Lucky you. No discomfort, no drain and no complications. You must be a strong young lady. Please tell me how long does it take to heal to normal life after double mastectomy? I need to for double mastectomy but am bit nervous since I don’t have 4 weeks vacation/ sick time. Will I be fine to go for work in two weeks after double mastectomy? Please advise. Thank you and take care.
Do not worry, you will not leak. I had bilateral mastectomy and I got four drains, two on each side. I chose to sleep on the couch with pillows for support. I did not need any pad. Good luck with everything!
Your mastectomy recovery checklist is a valuable resource for a challenging journey. Thanks for offering helpful preparation and organization tips.
I just had a bilateral mastectomy on Nov 29, 2023. I will do reconstruction surgery in 4-6 months.
It has been 1 week today and I’m feeling good! As far as pain I’m just taking Tylenol and Ibuprofen.
I have 2 drains and can’t wait to have them removed (see the surgeon tomorrow and I’m crossing my fingers).
Feeling a lot of tightness and heaviness in my chest, has anyone else experienced this?
Expanders they placed are also super uncomfortable, can anyone tell me about their experience with expanders?
Any suggestions or advice would be greatly appreciated.
I had a double mastectomy October 25th and had my lymph nodes removed on one side. I just had the last of my 4 drains removed yesterday. I was finally allowed to remove the surgical bra that felt like I was in a vice grip. But now, I went to put on a softer bra but feel just as uncomfortable because I feel it is hiking up over my stitches. It hurts. Any suggestions as to go braless or something else?
I am 38DD and not thin. My surgery date is 3/20. I haven’t had my prep appointment with my plastic surgeon yet. I will ask about my armpits!! I see you have the same Father I do. I was given a devotional 50 Days of Hope by Lynn Eid. She knows cancer and Jesus and speaks what is in my heart I can’t explain. She also has a website. I read that cancer anxiety and stress is bigger than others. Just looking to get ready and be ready for post op. I’m 71. Second cancer or recurrent in left breast. Going flat (let’s be done with this as much as possible!!!!) I’m just nuts sometimes. Drs and nurses involved seem to treat that as usual behavior. My husband is a champ! Remember He has His eye on you!
Most helpful information. My surgery was on 01Nov2023
My mother is 88 years old, has uncontrolled Type 1 diabetes, is partially immobile and has cognitive decline and the Kaiser surgeons are pushing hard for her to have a partial mastectomy (left side with lymph nodes). I’m researching like crazy trying to understand what to expect if she decides to have the surgery. Her oncologist told her that the process is “pain-free.” I’m extremely skeptical and am planning to help care for her. Any advice for caring for a frail person going through this who is already partially immobile? The doctors aren’t much help.
Possibly facing double mastectomy in few weeks. This is second round of breast cancer. First time was lumpectomy. I am having trouble trying to make a final decision on another lumpectomy or the double mastectomy. The lumpectomy left me severely deformed, which is why I am leaning toward the mastectomy. I keep going back and forth. Does anyone have any input on how you made your final decision? I am second guessing every decision. This site has been really beneficial for preparing me for what is ahead, either way.
I’m scheduled for double mastectomy for March 11. Cancer only in L breast, spot in R is benign. However, it’s been a relatively easy, quick decision to do both. I can’t imagine living in fear of such an increased chance of it in R breast.
Paula, I too am preparing for a 2nd surgery. I had a lumpectomy of left breast 16 years ago. The cancer is back on the same breast and I’m considering a double mastectomy. I’m 70 and scared. These comments have been so encouraging. God bless all of you on this journey.
Thank you all for these wonderfully helpful comments! I am about to turn 80 Just diagnosed with high-grade DCIS and will likely have a mastectomy of left breast in the next few weeks. Need to avoid the radiation often done with lumpectomy. Also want to tell women over 70 not to stop having mammograms.
If you want to do research, and not everybody does ,try the following: If you join Up to Date for a month you can read lots of medical articles about your condition –doctors use this site. Also try The Breast Cancer Survival Manual by John Link MD and others most recent 6th edition; The Breast Cancer Book from Johns Hopkins. Recovering from Breast Surgery Diana Stumm this is about exercises to strengthen your body and relieve pain and avoid things like frozen shoulder.
All of your comments have been so encouraging. Wishing you all a happy new year and a healthy one and great progress in your recovery if you are still recovering.
I had my r side mastectomy Nov 20. I was given the option of lumpectomy and it was highly suggested over mastectomy especially since I have an auto immune disorder that deals with infection and healing. For some reason I had it in my mind that the mastectomy was best. I researched everything I could. I read a lot of women had lumpectomies and ended up going back with more cancer being found. I pushed for the mastectomy and my intuition was right. Today was my post op and pathology showed cancer in my lymphnodes. They said if i had chosen the lumpectomy i would be going right back to surgery. Treatment and possible more nodes to remove but the r side mastectomy is behind me. Prayer for your decision making
I too have been faced with that decision.
after long discussions with myself, i decided to go with double mastectomy with reconstruction.
1. im in fairly good health now
2. my cancer came out of the clear blue
3. there could be a chance that it could reoccur.
I could be cancer free for the rest of my life and hopefully have peace of mind
all the best to you
best to you
My mother is 88 years old, has uncontrolled Type 1 diabetes, is partially immobile and has cognitive decline and the Kaiser surgeons are pushing hard for her to have a partial mastectomy (left side with lymph nodes). I’m researching like crazy trying to understand what to expect if she decides to have the surgery. Her oncologist told her that the process is “pain-free.” I’m extremely skeptical and am planning to help care for her. Any advice for caring for a frail person going through this who is already partially immobile? The doctors aren’t much help.
This site has been beyond wonderful. I am stocking my Amazon cart, lol. Will be having bilateral mastectomy soon. I feel well informed and prepared. Thank you to all who participate & respond.
Questions: on average, how long until I can drive myself? And, I work from home on a computer, what has been the experiences for length of time returning to work if anyone else works from home too? Thanks.
Because of my sister’s dbl mastectomy on Aug 29 2023, I went and got my very late mammogram on the day of her surgery. My heart sank when they found a problem and everything has moved quickly. Because cancer wasn’t on my calendar, and other things were, I am having my dbl mastectomy on Nov 30. All of the items on the list are the same tips she’s given me along with this, if you can, get a power recliner. It will make getting up and lying down so much easier and probably most importantly, with a power recliner, you can lay down and get up on your own. Much love to all. We can do this!
A power recliner is a great suggestion, Ann! Thank you for your comment. We are keeping you and your sister in our thoughts and prayers. Please reach if you need resources or support.
Just supported my young daughter after having a double mastectomy. The most important item was a back scratcher which we called her wand! She used it to scratch her hairless head and face. She would even sleep with it in her chair! She told me she wished she could share that with other patients! Go buy a wand ladies.
These are both great recommendations! Thank you for sharing. We’re wishing your daughter continued healing.
I am having a double mastectomy in a few weeks. The list of items detailed is so helpful. I appreciate all the comments and the care of your staff in compiling the list of items needed in preparing for the surgery and for recovery. Wishing everyone a full recovery.
You’re in our thoughts as you approach your surgery date, Betty. We’re glad you fund this list helpful. The comments from patients and survivors on this blog post are also full of helpful tips for you to scroll through if you have time. 💗
Had surgery 7 days ago and have complications. The drain stopped working after the 2nd day with very small amounts of drainage. Developed a hematoma and swelling under the arm towards the back. The drain was removed and told to monitor the site. I wasn’t given much information about what compression devices that can be used. Any suggestions?
Hi, I just had mastectomy a week ago on my right breast, had 3 lymph nodes removed on Right axillary and lumpectomy on my left breast. I am glad surgery is done – I was terrified at first but glad it went ok.
This was after 4 1/2 months of chemotherapy.
Pain is manageable with alternating Tylenol and Motrin every 3 hrs.
I seem to be draining enough about 90-100ml total a day after 3x of draining/milking.
I just noticed last night that I am seeing some swelling underneath the right axillary/armpit near the drain tube towards the back area and looking like a start of a hematoma and some numbness in the area. I messaged the Dr and the visiting nurse and they said it was normal? Not an infection but normal swelling.
I am curious to know if anyone else had this experience and what you did to resolve it?
Thank you very much for sharing these very helpful tips & recommendations! I have 3 rounds of chemo left & looking at surgery (bilateral mastectomy because I am BRACA2) around Thanksgiving. So many warriors out there I am grateful for your courage & hope!
We’re cheering you on as you continue in chemo and approach surgery in a few weeks, Colleen. We’re here for you—please reach out if you need us.
With a single mastectomy w reconstruction can you use the opposite arm normally after surgery?
Karen,
Have you had your surgery? I am in the same circumstances. Were you diagnosed with DCIS?
Any info would be of assistance. Scheduled for surgery on October 5, 2023
I was diagnosed with DCIS on Feb / 2023, Stage 0, non-metastasis.
On, May 8, 2023, I had a Lumpectomy and two Lymph Nodes removed of the right breast found negative for any cancer. After surgery, pathology report confirmed cancer cells were left behind at margin. On August 28, 2023, I chose to have a Masectomy of the right breast, and I am now cancer free and cured. No reconstruction was done. I feel much peace, and I thank God every single day for my cure. I bought a Dove, body wash, for sensitive skin, which has been such a blessing. Another blessing , a Masectomy or lumpectomy pillow which I still wear when I am a passenger in a car or when I drove between surgeries., from Amazon. Can’t bend over to pick up anything you drop, so my hubby bought me, from CVS, a reacher grabber stick. Can pick up a dime from the floor without bending over. From Amazon too.
Wishing you a fast recovery. God bless you.
Great advice Mini. I was diagnosed the same with DCIS and after 2 lumpectomies no clear margin. Mastectomy left breast on the horizon. You stated you had no reconstruction and I’m wondering about wearing a bra and what to do about the empty cup? I wear pullover stretch bras.
Tracie . Are you happy with your reconstruction. Did you have an implant or body fat done. I am due for the bilateral mastectomy this month and trying to work out which way to go . Very confusing
I’m scheduled for a second lumpectomy (right side) next week. I just found out two days ago that the margins were not good on the first. Didn’t feel ready to go the masectomy route, but researching here so I’m better prepared if the second lumpectomy doesn’t do the trick. What a journey!
Hello Josie
I was diagnosed with a DCIS. Had a single mastectomy 2 days ago. I decided to stay in hospital for 1 night. Home now, and feel OK. I was amazed at the quality of sleep I got at home last night. I have been drinking plenty of liquids as I felt very dehydrated.
Did you also do reconstruction?
How long were the drains in? Who drained them for you?
I’m trying not to be terrified. I want the implants, but it appears that they are what carry the much longer recovery time and possible complications.
Cathy
Very useful and comforting messages.I was anxious but my brave daughter is comforting me .I have mastectomy in left breast on 12 th September.let’s see how will be this new journey of life ..as a woman …trying to be brave and bold to conquer this demon .. I will post more after surgery ..
I just finished chemo Aug 10th. I had 16 rounds. I have a double mastectomy set for Sept 18th. My cancer was stage 2b grade 3. It is very encouraging to read all of your stories.
Wondering how you’re doing. I hope all went well. I am 62, also node positive stage 2B, Estrogen positive HER2 negative invasive ductal carcinoma. Diagnosed August 2023. Completed 16 rounds of ACT chemo. Scheduled for a single mastectomy, left breast on 3/7/24 with implant. Planning tissue reconstruction down the road….
My daughter has stage 2b triple negative cancer. She has just finished 41/2,months of chemo, and scheduled for a double mastectomy. What has your recovery been like? What can she expect?? Thanks!
Due to have a left mastectomy with reconstruction in a weeks time and I’m dreading it. I have 2 small kids and one of them is only 2.5 months. I’m so not ready to go through it all but it is what it is. List is great, I am reading it at 3am in the morning. I hope everything goes well and I’m cancer free soon.
Thanks for sharing your story and I’m really hoping everything went fine with your surgery and you are having wonderful life now . I have 2.5 years old boy too and going down double mastectomy round soon . How was your experience considering having child and going through this ?
Best
T
Thanks for the info. I had a grade 2 small breast cancer in my right breast taken out in May. Tommy tumour was found about 8mths prior but kept disappearing. In march I had scans glaore. Less than 2mths later it was out. It was a hormonal tumour I’ve started hormone treatment because I’m waiting on results to find out if I’m carrying the brca gene (highly likely) if so my oncologist has recommended a dbl. If I’m not I then start radiation. This waiting game is frustrating. But for now I’m gathering all the info I can.
Have any if you had or know about whether to get a mastectomy if you have (as I do) “occult” (meaning of unknown medical origin) breast cancer? My cancer was not visible on mammogram, ultrasound, or in the breast area on MRI. It was found in the right lymph area on breast MRI, in one lymph node, confirmed by biopsy and subsequent lymph node surgery pathology. I have had right axillary lymph node removal and three months of chemotherapy. I will be seeing the surgeon today to consider a mastectomy. What do any of you know about the advisability of a mastectomy in this case? I know I will be getting radiation therapy later, as well as hormone therapy for high estrogen positive breast cancer.
I’m 46 years old. I was diagnosed with triple negative metastatic IDC August 15th, 2023. There is no trace of cancer in my breasts on mri or ultrasound. It is confined to the lymph nodes on the left side with just a tail touching my left breast. I also have zero cancer anywhere else in my body with zero history of breast cancer in my family. From the very beginning I chose double mastectomy with no reconstruction. I cant stand the thoughts of it coming back, so I’m not giving it the chance. I’ve had chemo since September 2023, but I’m having reactions to my immunotherapy so it put a hold on my surgery that is now scheduled for April 3rd, 2024. I will need radiation afterwards. My surgeon says I will stay one night in the hospital then be ready to go home. I was also told that due to the type of cancer I have, my team would advise a double mastectomy, that anything else would not be advisable. I’m getting things ready over the next couple weeks. The list provided has been so helpful. Thank you so much.
I’m in the middle of my journey, going to have double mastectomy and reconstruction. Have met with surgeon and this week is oncologist and plastic surgeon. This has been very overwhelming to say the least. You ladies are so helpful with your knowledge of what is needed to help get through this journey as best as possible for not only me but my family as well. Thank you very much for your help. I have started my list of necessities and things I need to do before surgery. I pray for all the ladies to have a quick recovery and a survivor.
Hi Betty, and so sorry to intrude – but I ran across your post here, and it truly hit home. No need to respond if you aren’t feeling it, but like you, I am now in the middle of my journey – double mastectomy surgery coming up on 12/4. As I have NEVER had surgery in my life (age 55), of course I am freaking out. My cancer is low grade on the right breast, but because it is spreading all across – the surgery is mandatory. So I have felt that the double should happen, to ease my worries in future, also as I am the 4th generation on my maternal side to have. Is there any info you can give me (personal experience) of how your surgery went and how was pre and post? Drains, weird bras, can’t shower for 2 weeks etc?The doctors with probably too much info right now have me in a panic. I also hope that you are doing quite well at this time.
Thank you,
Cory
Hi Cory, I just recently had a double mastectomy 4 days ago with reconstruction at the same time…… first couple days were a little rough but now on day 4 I’m feeling pretty well 😊 I got to shower on my third day and not cover anything! You got this! And if you need to talk or have any other questions you can email me ❤️❤️ panicking is normal, but you will be just fine!!! [email protected]
Good luck,
Rachel
Define a little rough please. Thank you!
Cathy
Rachel, did you have drains in place? I was told no showering until drains are removed. I had surgery 11/17.
I just finished 3 months of chemo and I have bilateral mastectomies scheduled in 2 1/2 weeks- it is Stage ll-b, self diagnosed with only symptom being an itching in my right breast that I ” scratched “… no family history, no symptoms, etc- chemo was ” challenging ” but my body bravely fought it and I expect nothing less than similar results post surgery- I hope to be a resource for others and this site and all of the remarks are so reassuring ( ps- I am a physician and THIS was never on my radar as a concern for me! so I have had a LOT of learning to do) I will return to this site to both learn and share- best regards and good health to all!
I never see any comments about going to the right hospital or getting the right surgeon. I found my lump 8-20-23. Couldn’t get biopsy till 11-3-23. My surgeon never told me I had invasive ductal carcinoma. He just said it was driven by estrogen. I asked many times if it is self contained in the lump, why would I need cemo or radiation. He said may be in lymph nodes. I am having a double mastectomy, hoping to get everything. I called his office 12-20-23 and asked his nurse what I had. She said “ it’s on the front page of the report”, you have invasive ductal carcinoma. My surgeon never showed me the first page of the report. I stupidly did not open my chart. But you would think you had an honest surgeon. He is on another vacation. I will see him in 2 weeks. Still no surgery scheduled. I will be flying to MD Anderson, Houston. With everything I’ve read here, I don’t know how I will be able to fly home after surgery. Who would take the drains out? What doctors would help where I live in Southern California? With A D Anderson- they do all tests in 2 days, test results on the third day.
It’s been 4 1/2 months since I found the lump. It is very painful.
This has dragged on with one test, then a doctor visit. A week or 2 later- another test, A week later an Ongologist visit, 2 weeks later, an MRI, 2 weeks later a visit with a radiology oncologist. 2 holidays. I don’t think I’ll have surgery till February. So women do find the cancer and then we wait. If anyone has anything helpful, I would appreciate it. Thank you, Ali
I know what you are going through. I was diagnosed on Nov 12 2023. My surgery is finally scheduled for Feb 5th, mastectomy. The waiting is maddening but my date is close now. I have been leaning on God for strength and comfort. My church family is also a source of strength and hope.
You should not have waited more than 2-4 weeks with “invasive” cancer. I went to Mayo Clinic in Jacksonville, FL. Mine was stage 0, non-invasive and they would not let me wait. Also, I strongly suggest all women with breast cancer get a “bilateral” masectomy. Everyone I know who got only one breast removed regrets it. Bras never fit, they never match, etc. And it lowers risk of cancer returning in other breast. The top surgeons at Mayo Clinic recommend this. Please use MD Anderson or Mayo Clinic if possible. They are exceptional.
So sorry to hear that you are not getting the care you need I would suggest you join one of the breast cancer support groups. It also seems like you may need another doctor. You need love and lots of support and tender care during this journey. Best wishes my friend
My daughter has stage 2b triple negative cancer. She has just finished 41/2,months of chemo, and scheduled for a double mastectomy. What has your recovery been like? What can she expect?? Thanks!
Sounds like what I have and going through. So thankful for these comments but not due for surgery until April as of right now. Good to prepare early. I’m still going thru chemo but I’m glad I came across this site !
Hi there I just had a double mastectomy myself 4 days ago with reconstructive surgery at the same time! First couple days were kinda rough but nothing she can’t handle 😊 mine was 2 a triple negative…. Stay positive, I’m on day 4 and I’ve been doing most normal things besides lifting! The drains are a little annoying just make sure you flush them… tell her she’s got this and good luck ❤️❤️
Rachel, are you happy with the reconstruction? I’m having bilateral with skin saving reconstruction. I’m so scared.
Tracie, I had a double skin only sparing mastectomy in June this year with immediate reconstruction. It’s not as scary as it seems , I honestly don’t remember the first few days after because I mostly slept in a chair. What I wish I’d known before hand was get a good compression bra. One that does NOT just smash em together, mine healed in a weird shape because they stayed pushed together.
I have the same question.
I’m supposed to play in the tennis nationals in mid March 2024. I just found out that I’ll have to have right breast removed. (DCIS reaching to my chest wall. 10cm).
I would like to do reconstruction, but am so concerned about the pain and complications and if I’ll be able to swing a racket 2-1/2 months after this kind of surgery.
Does anyone have some answers for me?
As far as we know- I do NOT have invasive breast cancer.
Thank you!
Cathy
Due to have my mastectomy on Friday 11th Aug 23. I came across this site and I’m so grateful for all you ladies that have given advice. Now off to do the shops to buy new clothes ( never need an excuse to buy new clothes) and all the other suggestions. Big thank you 🙂 x
Oh you have no idea how grateful I was to come across this! My mastectomy is coming up soon and the past 3 weeks have been a whirlwind as I’m sure you’ve all experienced similar in some way or another. When I stumbled upon this I was just so amazed! I’m so thankful there are such amazing generous loving ladies out there and I wish you all well on your journey through life. Thank you all for sharing!
Can anyone recommend a specific wedge pillow?
Thank you for this. I just got the call and now doing research. This helps a lot.
I am scheduled for a double mastectomy in 10 days. Thank you for the list
of items I will need. My only concern (and I hope I misunderstood) is that I will not have a bandage or special bra when I leave the surgery center.
Also I am being sent home with no hospital stay.
Lyone, I just emailed it to my daughter. Hold your finger on the website address at the top or if you’re on a computer, right click. Copy. Go to your email and start a new message. Paste in the area you would begin typing in. I hope this works for you.
Thank you for this wonderful list. It is very useful. I just wish there was a way to email it! My mother really needs it, and she is not on any social media.
Just starting this journey and this list is so valuable. Thank you for this.
Ask your doctor if Melatonin is right for you. Also, I used a light lavender spray on my pillow at night, and it sure helped me. (Right mastectomy in November, 2020, after chemotherapy).
I had my right breast mastectomy on
May 29, 2023. After surgery, all went well with the medicines taken after the surgery by the doctor, I didn’t feel any pain, few instance of itchiness, but no major side effect after surgery. However, my problem is that I cannot sleep well after the surgery. Please enlighten me on what should I do to regain back my sleeping hours at night. Thank you so much and best regards.
I ordered all of my post op surgery clothing on Amazon. My favorite clothing that I love to wear is a long length gown with snap buttons around both shoulders and velcro closures that runs down the middle of the gown from the top of your chest down to the length of the gown. Also another clothing is a post op bra that I bought from Anaono.
Do you have the manufacturer info on the gown you ordered from Amazon. Would like to get one for my neice who is having surgery very soon.
Another thing some one Suggested to me was the battery operated toothbrush so you’re not having to move your arm back-and-forth I thought that was a really good idea
Joanne, no this isn’t something you should postpone, unless your doctor confirms your choice. Do google your best choice of surgeons . Will you be choosing immediate reconstruction? If so, have you chosen implants(silicone or saline) or will you go the micro surgery route? There’s only two locations in SC that can do this kind of surgery: Spartanburg regional and MUSC near Charleston.
Regardless, check out as much info online as you can and view as many videos that pertain to your situation. There are also charitable organizations that will help you with things like walkers, shower chairs AND non perishable items.
Check out your hospital resources too. The gift shop in the hospital often has resources .
I had my bilateral and reconstruction in December also.
Then you. I will be having Bilateral Mastectomy January 2022 and this helped me with my wish list for everyone that keeps asking is there anything I need.
I’m scheduled to have a left breast mastectomy with no reconstruction on 12/2/21 I’m very apprehensive about the recovery time and the drains. Never realized about sleeping on my back, button or zipper tops. I was planning on traveling to my daughters for Christmas in South Carolina from my home in Florida but I don’t want to be a problem, is this something I should postpone?
I had a single mastectomy on my left breast 11/1/23 and no reconstruction. Amazingly, I never had any pain, although my chest was a little tender, of course. I took Tylenol and ibuprofen for 7 days, and after I stopped, still no pain.
I had a surgical drain for 10 days.
I was able to sleep flat on my back in my bed, and i didn’t see any reason for me to sleep in a recliner chair.
At first, raising my left arm felt very tight, but after 4 weeks of gentle stretching, I can almost lift my left arm straight over my head. For me, so far my mastectomy recovery is going well and exceeding my expectations!
I am have bilateral mastectomy in 10 days with no reconstruction. I’m 64 see no reason. Worried about recovery never had surgery in entire life. Suggestions?
Hi Karen, I hope all went well with your surgery. I am 63 and was recently diagnosed with breast cancer in my left breast and I am considering having bilateral mastectomy in with no reconstruction. I am curious how you are experiencing this.
This is very encouraging to hear. I am scheduled to have a unilateral mastectomy on Dec. 18th. I am currently trying to decide if I should just have a double one. This is my 2nd time having triple negative cancer in the left breast and even though they say the chance of it occurring in the right breast is small, I am still considering having both removed. Such a hard decision to make. I will not be having any reconstruction.
Hi Jocelyn,
I’m curious if you did uni or bilateral? I have Stage IIB TNBC and just finished chemo/immuno therapy and have surgery scheduled at the end of Feb. I’m still deciding between lumpectomy and mastectomy.
How long was it between your first diagnosis and your second diagnosis? Did you have a lumpectomy with radiation the first time? I’d love to hear your story.
Kristine in San Diego
I found out I have breast cancer Dec 13th and today I was diagnosed with triple negative in the left breast and at least two lymph nodes. I will most likely have a bilateral mastectomy without reconstruction.
Please have bilateral if you can. My mom did, 37 yrs ago w/ no reoccurrence. Not so with six other family members who only had unilateral mastectomy.
Marcy, this is very encouraging to hear. I’m scheduled for L mastectomy 12 of January. My pain tolerance is high, but still feel a bit apprehensive. Doctor said my recovery time should be minimal and feeling good by week 2 post op.
I prayed for you Laura! Hopefully, you are fully recovered by now.
Although I never had any pain, my chest was a little itchy weeks 2 & 3 after my mastectomy, probably as it was healing. I was back to riding my bike exactly 1 month after my mastectomy. Looking back, the surgery wasn’t anywhere near as bad as I had imagined.
What really eased my fears before my surgery was the experience of a friend who had a mastectomy a few months before me. My friend said how painless her mastectomy was for her. I can honestly say my mastectomy was also painless. Amazing!
My daughter will be having bilateral mastectomy (due to aggressive breast cancer) next week and I’ll be her main caretaker. I’ll probably stay with her for awhile because she’s a single mom of 2 young school age kiddos. Thank you for tips and suggestions. I’ll be taking a leave from work to help her but any suggestions would be appreciated. Thank you
I am just under two weeks post double mastectomy. I was so apprehensive about the pain but in fact after a couple days I really didn’t much pain meds. The drains however are such a nuisance and as drainage becomes less they pinch quite a bit. Best of luck and love to you throughout this ordeal. I drove the car ten days out. Rest and relax best you can xo
One more tip – ask the doctor if physical therapy is recommended, a step that many women don’t realize can be extremely beneficial. This article provides more details on the benefits of PT for someone recovery from breast cancer: https://www.jfcares.org/blog/physical-therapy-following-breast-cancer/
Great information to know! My double mastectomy is in 2 weeks. I hadn’t really given any thought to having the right clothes at home following surgery. What is the main consideration when buying pajamas?
A friend of mine wore caftans. Very roomy and not clingy!
I found that stretchy type button down pajamas worked best for the drains. Also an essential for me was a neck pillow at home and I wish I would have taken it with me to hospital !
Thank you so much for this list. My surgery is in 5 weeks and I am trying to get prepared. This helps so much.
BUTTONS!
You will need tops that are full button downs. You will not be able to raise your arms up to put on a regular tshirt. Also, size up for comfort. Good luck!!
I had my surgery 6 months ago & I suggest keeping a small cooler in your room for water, juices, etc. Also, foam no rinse body wash is great for in between freshing up!
Keep a log in the bathroom to write down your fluid amount from your drain tube.
I am so grateful for this list! I am going to be having a mastectomy soon so this list is a godsend
I just had a Mastectomy and all the Lymph nodes removed. From my Right Breast, on Thursday, October 12,2023.
With Expander put in(it stretches the skin to get ready for Reconstruction.
I have 2 Drains, and it is a bit difficult.
After returning home, I choose not to use Narcotics for the Pain.
By no means am I against using them. It’s just a personal choice.
I was wondering if anyone who had these drains. Had issues with this :
I have clogs a lot and it seems to be like tissues or mucus
Hi I had my bilateral mastectomy Oct 16, 2023. Those mucous looking is normal. Did they teach you how to “milk the drains”?
I had some clogs in the drains, from tissue also blood clots. My surgeon would milk or (strip) the tubes and it forced the clogs down into the drains bulbs. I think that happens more than we know. Is it Normal for everyone I’m not sure, but I have made it thru, and drains came out today.
Hi Tarri! I had the exact same mastectomy w|expander on 9/29/23! I had the drains without issues. A few clumps and I found them aggravating!
Good luck in your journey!
I, too, had a mastectomy on Oct 4th and I still have one of the two drains in after 2 weeks. I also experienced debris and stringy clotting in my drain output, and my surgeon assured me that is normal.
I had a lumpectomy with lymph nodes removed in Feb then a double mastectomy in August, so I’ve had 6 drains total. My drains had stringy stuff in them. My husband stripped them out the best he could. If stripping them doesn’t work I’d call your Dr.
I had a left sided mastectomy on 1/19/2024 with an expander. I am usually a left side sleeper or stomach sleeper which I have not been able to do. I have been using a wedge pillow in bed since the day I got home. I keep a pillow on my left side for my arm and to help from rolling on that side. I was also told I should use a recliner which I do not have and do not miss it. Good luck
I had a double mastectomy less than 2 weeks ago. Right after the surgery I felt pain but my doctor injected a medication that relieves pain for 3 days. After the 3 days were over I never had any pain, only some pressure because I had expanders implanted at the same time as the mastectomy. I still have three drains as one is already removed. I feel fine and have been able to go shopping (my husband drove me). I only took 1 pain relieving pill at the hospital, and after that I did not need any more at home. I plan to return to work in a week. Technically I could do it even 2 weeks after surgery because I work at home but it is better to have all drains removed first. It is different for everyone, but I hope that this information will help. Buy a wedge pillow before a mastectomy – it has been invaluable for sleeping.
So…thank you all for your comments. They are a Godsend. I’m still processing.
Any idea what medication they injected? Im going in this Thursday and would love to know! Thanks glad it went well!
If you have a bed that sits up to 90 degrees would you still need a wedge pillow?
Why did you have to have double mastectomy after lumpectomy?
I just had a double mastectomy 17 years after I had a lumpectomy with radiation. Keep getting checked. Both of my cancers were found through mammograms. I never felt any lumps.
This is some really good information about recovering from surgery. It is nice to know that it would be smart to consider how you might need to deal with drainage from the wound for around 6-9 weeks after the surgery. That is good to know because my aunt might need a mastectomy. https://www.assocofsurgery.com/services-and-forms
Great!
Thank you so much for all the suggestions and support! I , too, am one of the many reading these posts in the wee hours of the morning. I’m due for a partial mastectomy with breast reconstruction on Valentine’s Day (Ash Wednesday)! My question is , how long will I need to sleep on a recliner for ! Is it until the drains come off? I’m a bad sleeper . I toss and turn and flip all over the bed throughout the night. I don’t know if a good wedge would be helpful at all . I just want to make sure I get plenty of rest and heal. I want to prepare for my sleeping arrangements. Prayers to all ! Thank you !
Firstly I wish you well for your surgery this week. I am one week back from left mastectomy with lymph nodes no reconstruction or implants. In answer to sleeping after surgery, I have found sleeping partly sitting up in bed. I have a foam boomerang pillow and borrowed extra pillows from family and use one each side and third pillow against the boomerang pillow. I was given a breast care pillow at hospital but I think a travel pillow for each arm. Positive thoughts for you.
I had a left sided mastectomy on 1/19/2024 with an expander. I am usually a left side sleeper or stomach sleeper which I have not been able to do. I have been using a wedge pillow in bed since the day I got home. I keep a pillow on my left side for my arm and to help from rolling on that side. I was also told I should use a recliner which I do not have and do not miss it. Good luck
I had bilateral mastectomy with no reconstruction five weeks ago and I still prefer to sleep on the couch in half sitting position with pillows for support. I can lie on my side, but the pressure on the chest is uncomfortable.
All my life I was a light sleeper who could only sleep on the side. But somehow I am Ok with sleeping on my back now and I get plenty of rest. So do no worry, all will be all right. Good luck!
How did you decide whether to get implants or not? I’m 62 and I’m not sure I want to go through the additional surgery ?
I had bilateral mastectomy with reconstruction on Nov. 9 and removed drain in 7 days but still has chest pressure & numbness.
You need someone to help to empty drains.
Can’t sleep well.
Please prepare buttoned pajamas, big cardigan, and recliner chair. It’s hard to sleep in normal sleeping position after bilateral mastectomy. (Still having hard time to sleep. -3 weeks now)
Thank you for sharing. I’m scheduled for a bilateral mastectomy on 2-21-24. I have the brca gene.my mind is all over the place. I’m 57 .I needed to read about a real experience. I.I’m getting the spacers. My doctor said it will be 2 procedures..I don’t think I want nipples. I want 3d tattoos
Good luck on your bilateral mastectomy I had mine in July make sure u have button pajamas and you must sleep elevated and put a pillow under each arm you will be more comfortable trust me wishing you the best
Hi Lenora,
I read your post that you are scheduled for a bilateral mastectomy. I had this done in April of last year. I had reconstruction with tissue expanders. I am currently waiting to have my final surgery scheduled. Feel free to reach out to me anytime if you’d like to talk or have questions I might be able to answer. My email is [email protected]
Leonra, I think that is a wise decision about your nipples. I was adamite about keeping mine and now wished I hadn’t. It really limited the plastic surgeon on several things. I didn’t understand what he was talking about before the surgery and the limitations but now I do. Hind sight 20/20.
I had arm pit pain it felt like I had 2 metal posts shoved up in my pits. I had small ice packs that had an elastic strap that went on like a purse and I didn’t have to worry about making sure they were in the right place. Clever idea.
I totally agree. Sleep is very uncomfortable I had to squeeze myself in the corner of the couch to avoid moving. Yes having someone by your side for the 1st week is very important.
Hope this might be helpful for anyone battling. I just had my mastectomy left side 1/9/2024. I had the option of lumpectomy however I made the best decision for mastectomy. I had 3 areas of concern. I felt only one tiny pea size lump however doctors found 3 tiny masses and a salt spray of precancerous cells deeper behind in my left breast. I have Ductal carcinoma stage 0 & 1 and it’s activated by hormones progesterone Estrogen. I will eventually need hormone blocker. No raditaion or chemo. I had 3 lymph nodes removed. Plus reconstruction with implant. I was in pain first 3-5 days and it became tolerable. I did not use the pain meds only used Tylenol plus Benadryl, hydrocotizone for itching which also helped me sleep. It is hard to sleep sitting up the first 2 weeks but I stacked tons of pillows and played relaxing healing music and sound bowl music Wear zip up hoodies and loose joggers or pjs to help with drains and going to restroom. I had one drain for 2 weeks. I’m making sure I eat well including Bone broth everyday for healing inside. Vitamin D and multivitamins. Fiber to help since laying down to much can constipate. Walking even if it’s in small incremental amounts. Deep breathing and meditation to help navigate overwhelming thoughts and fatigue. I have 2 kids a toddler and 1 year old and can’t pick them up. That’s even harder to not do. My recovery time is supposed to be about 6 weeks. Honestly, it’s surreal I had the surgery and a new left side. Feel some discomfort, numb, tingly, some sharp pains and itchy right now. I showered the other day and it was exhilarating yet a challenge with one hand. I am to limit my mobility on the left arm as much as possible for 6 weeks so that the reconstruction can heal properly. Please listen to all of the doctors orders for a successful recovery. God Bless all you beautiful warriors.
I’m so glad I found this site. Your stories have helped me immensely. After 15 years post lumpectomy, another are of concern was discovered and made the decision to have a mastectomy. Scheduled for 3/6 with reconstruction. As many of you have said, my mind is all over the place and concentrating is almost impossible at times. Thank you all for your stories and God bless you all on your path to recovery! Stay strong!
I just had my mastectomy left side 1/9/2024. I had the option of lumpectomy however I made the best decision for mastectomy. I had 3 areas of concern. I felt only one tiny pea size lump however doctors found 3 tiny masses and a salt spray of precancerous cells deeper behind in my left breast. I have Ductal carcinoma stage 0 & 1 and it’s activated by hormones progesterone Estrogen. I will eventually need hormone blocker. No raditaion or chemo. I had 3 lymph nodes removed. Plus reconstruction with implant. I was in pain first 3-5 days and it became tolerable. I did not use the pain meds only used Tylenol plus Benadryl for itching which also helped me sleep. It is hard to sleep sitting up the first 2 weeks but I stacked tons of pillows and played relaxing healing music and sound bowl music Wear zip up hoodies and loose joggers or pjs to help with going to restroom. Bone broth everyday for healing inside. Vitamin D and multivitamins. Fiber to help since laying down to much can constipate. Walking even if it’s in small incremental amounts. Deep breathing and meditation to help navigate overwhelming thoughts and fatigue. My recovery time is supposed to be about 6 weeks. Honestly, it’s surreal I had the surgery and that I have a new left side. Feel some discomfort, numb, tingly, some sharp pains and itchy right now. I showered the other day and it was exhilarating yet a challenge with one hand. I am to limit my mobility on the left arm as much as possible for 6 weeks so that the reconstruction can heal properly. Please listen to all of the doctors orders for a successful recovery and God Bless all you beautiful warriors.
Veronica, Thank you so much for the advice. I feel like this will be me in a few weeks. Surgery beginning of March.
I’m meeting with my plastic surgeon on Tuesday then my surgery will be scheduled. I also choose a mastectomy with reconstruction. Your information will be helpful thank you!
At 44 yrs old, I had stage 1 invasive ductal carcinoma in my left breast which was treated with lumpectomy and radiation. Tamoxifen for 5 years. 16 years later, I was just diagnosed with stage 1 invasive ductal carcinoma, Grade 3, negative lymph nodes. I do not need chemo. My sister, and 2 paternal Aunts and 2 paternal cousins have had breast cancer. I had a lumpectomy, and should have radiation mid February. Now I want to do a bi lateral Mastectomy. I’m so afraid of surgery and so confused.