Bilateral Mastectomy without Reconstruction Recovery Timeline

Posted by sheilaray @sheilaray, Sep 24, 2021

I'm going to be having a bilateral mastectomy without reconstruction and I'd love to hear from others who have gone through this about your recovery time. How long were you in the hospital? What could you do when you went home? How realistic is it to do desk work for limited times after going home?

My background, I had invasive adenocarcinoma of the left breast in 1997 with lumpectomy, lymph node involvement, chemo, radiation and tamoxifen. I've been in remission since then. I'm now diagnosed with invasive ductal carcinoma of the left breast and will not know if I need further treatment until after the mastectomy.

Thank you for sharing your experiences.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@californiazebra

Hi @keiracancer -- your post would be something I've written myself. I was also 54, divorced and done with relationships at the time of my mastectomy. My dog didn't care one way or the other. My breasts had successfully nursed a baby, served their purpose and were ready for retirement. My doctors tried so hard to get me to do reconstruction. I get painful keloid scars and did from the mastectomy. I also have a nerve disorder so I knew reconstruction would lead me to more pain and scarring. I'm 64 now and glad I didn't have reconstruction. I wore prostheses to work or whenever I was dressing up in more fitted clothes so the clothes looked nice. I'm not working now and rarely wear them. I just wear a non-clingy top at home, walking dogs, running errands. I maybe put on the prostheses a couple times a month when wearing fitted clothes out. Happy with my decision. My only issue is my surgeon apparently thought I would change my mind so she didn't do a good job of preventing the dog ears on the sides. Not pretty and my sides have been so sensitive to touch/pressure for 10 years probably due to my neuropathy. Advice to others: Make sure they don't leave extra tissue for changing your mind. Thanks for sharing your story.

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I too have small dog ears on the sides - not as flat as I had hoped. I should have taken a picture to my surgery appointment and said this is what I'm looking for - if you can't or won't do this - then let me know, because this is what I want. I too think the surgeon thought I'd change my mind - I kept saying - my breasts served their purpose and were no longer needed. They don't define who I am or what I look like. I'll request protheses for those times I think I might want to wear something more fitting and want additional shaping. I'm also not sure if the results of my surgery also have anything to do with my body shape and that I'm not as thin as I could be. I'm definitely not fat; but at 70 I'm soft and round in some areas of my body. I had a hysterectomy in my late 30's and have never been able to get that area flat again.

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@bpknitter53

I too have small dog ears on the sides - not as flat as I had hoped. I should have taken a picture to my surgery appointment and said this is what I'm looking for - if you can't or won't do this - then let me know, because this is what I want. I too think the surgeon thought I'd change my mind - I kept saying - my breasts served their purpose and were no longer needed. They don't define who I am or what I look like. I'll request protheses for those times I think I might want to wear something more fitting and want additional shaping. I'm also not sure if the results of my surgery also have anything to do with my body shape and that I'm not as thin as I could be. I'm definitely not fat; but at 70 I'm soft and round in some areas of my body. I had a hysterectomy in my late 30's and have never been able to get that area flat again.

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Hi @bpknitter53 -- thank you for sharing. It seems a lot of us have a similar story to tell as far as preferences and results. I loved your description of being soft and round. I think I'm going to use that from now on. My C-section also made it harder to get a flat belly again. The real question is, were your "dog ears" there before the surgery? Most of my excess weight is in my belly, not chest, so don't let them blame you. Also, about 3 years after my surgery I lost significant weight due to a neurological swallowing issue. Doctors were telling me I was too thin and need to gain weight. Guess what? The dog ears were still there. Very disappointing.

Analogy to explain dog ears for those unfamiliar. Remember Hostess snowballs? Imagine those sitting on the counter. If you remove the cake part (the actual breast tissue), the remaining marshmallow exterior (skin and surrounding fatty tissue) will collapse, lose its shape and be unsightly unless the surgeon takes the time to remove the excess to compensate for lack of stuffing. We shouldn't have to go in for a second surgery to fix that. My apologies if you'll never look at Hostess snowballs the same way again. đŸ™‚

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I don't know that this is the place to post this, but Medicare pays for bras if you don't have reconstruction. They do two front closure with pockets for the drains and then two or three every three or four months (can't remember exactly).

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@conk

I had a bilateral mastectomy eight days ago. My wonderful surgeon told me to feel that skin on the side prior to my surgery. It was there, like fat, and she said that was the number one complaint if women decide not to have reconstruction (I chose no reconstruction based on my conversations with several women who had mastectomy). I have yet to have a single pain, but I am more than ready to lose the drains! I could definitely do paperwork for a few hours if I needed to, even the first day out of surgery.

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@conk Wow, it sounds like you had a very successful surgery and are doing so well. Great to hear! Some bodies definitely do better than others when traumatized. You didn't mention any loss of range of motion in your arms either. Great! I think you'll be happy with your no reconstruction decision. Best to you.

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@californiazebra

@conk Wow, it sounds like you had a very successful surgery and are doing so well. Great to hear! Some bodies definitely do better than others when traumatized. You didn't mention any loss of range of motion in your arms either. Great! I think you'll be happy with your no reconstruction decision. Best to you.

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I had a Radical Mastectory 65 years ago. The surgeon told me he left extra skin flap incase of excessive swelling. I don't remember any swelling but still have the pouch
in the rear of my armpit. I have complete use of that arm, although there has always been a tightness of the muscle across my chest. Right side simple mastectomy. At the time of surgery, there was just skin across the chest, and just looked like I had never had a breast. Unfortuately, I am a lot heavier today and I have a 1/2 pouch on my chest. Not a breast, just an annoyance. Too old to worry about it. Just glad to be alive. I am 92. I also have two new knees, two new hips, and a shoulder replacement. I had a TAVA (name of Aortic Valve Replacement), two years ago, so I think I have had my quota of surgeries for this century. It would have been lovely if replacement had been available, but unfortunately, it is not possible after a radical (not enough tissue and skin for replacement) and it is much easier to have both breasts gone, than to have just one. With just one breast removed, your bra is always being pulled to the side or up too high. Life is always changing, and you just have to be ready for the next one when it comes.
Gina5009

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I probably cannot give you current information since I had my Radical Mastectomy 65 years ago (I have been told by doctors they would not do that to a woman today (You cant't flault success) and a simple mastectory two years later (not for cancer, it was decided because of fibrosis tumors) Not malignant. I can say the first one was tough. I could not use my arm for 1 year following the surgery, but the simple Mastectomy was a piece of cake. the chest was sensitive for about a year, but not painful. I was up and around as soon as I got home. Getting a Bra during the first year was difficult, but when I was home I just did without one. Please remember, this was 65 years ago. No reconstruction, or new techniques which I am sure make it even easier today. I do not know if you are having reconstruction (this could make things more difficult for a time, depending on what you decide you want. I wish you good luck, and I am sure you will be glad, once you get this behind you. Think of all the years you have ahead of you, beause of your wise decision.
Gina 5009

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@gina5009

I had a Radical Mastectory 65 years ago. The surgeon told me he left extra skin flap incase of excessive swelling. I don't remember any swelling but still have the pouch
in the rear of my armpit. I have complete use of that arm, although there has always been a tightness of the muscle across my chest. Right side simple mastectomy. At the time of surgery, there was just skin across the chest, and just looked like I had never had a breast. Unfortuately, I am a lot heavier today and I have a 1/2 pouch on my chest. Not a breast, just an annoyance. Too old to worry about it. Just glad to be alive. I am 92. I also have two new knees, two new hips, and a shoulder replacement. I had a TAVA (name of Aortic Valve Replacement), two years ago, so I think I have had my quota of surgeries for this century. It would have been lovely if replacement had been available, but unfortunately, it is not possible after a radical (not enough tissue and skin for replacement) and it is much easier to have both breasts gone, than to have just one. With just one breast removed, your bra is always being pulled to the side or up too high. Life is always changing, and you just have to be ready for the next one when it comes.
Gina5009

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@gina5009 thanks for sharing your amazing survival/success story. You are like the bionic woman now with all those replacement parts. So glad you're still with us and enjoying life. My great aunt had uterine cancer in her 30s, had controversial cobalt treatment at the time, and then went on to live a wonderful healthy life to 93. I'm glad they don't do radical mastectomies anymore. Sorry you lost use of your arm for a year. My cousin had a single mastectomy, and like you, had issues with symmetry after that. She told me she advises people either none or both. The lady that fitted me for prostheses said even with reconstruction symmetry is an issue with a single mastectomy.

My double mastectomy was 10 years ago and I lost a lot of range of motion (ROM). I've never been past 85% since, but it's good enough for daily living. Initially, my arms froze a little more each day until about five days after surgery I couldn't move my elbows away from my side. It scared me. It was challenging driving to my appointments or anything else. I've had 2-3 months of PT on three occasions over the years to regain ROM and reduce swelling and tightness (lymphedema). I still have pain issues, but I have a nerve disorder so that is no doubt the reason. Each body reacts so differently. Like you, I'm just happy to still be here. I'm already imagining what your 100th birthday celebration will be like! đŸ™‚

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@conk

I don't know that this is the place to post this, but Medicare pays for bras if you don't have reconstruction. They do two front closure with pockets for the drains and then two or three every three or four months (can't remember exactly).

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Good to know about Medicare coverage as I'll be going on that soon. My group insurance through my employer covers two bras each year and new prostheses every two years. Since I don't wear them often, I really don't wear them out. Just like real breasts, the silicone prostheses tend to lose their shape over time. I've only replaced them once in 10 years.

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@californiazebra

@gina5009 thanks for sharing your amazing survival/success story. You are like the bionic woman now with all those replacement parts. So glad you're still with us and enjoying life. My great aunt had uterine cancer in her 30s, had controversial cobalt treatment at the time, and then went on to live a wonderful healthy life to 93. I'm glad they don't do radical mastectomies anymore. Sorry you lost use of your arm for a year. My cousin had a single mastectomy, and like you, had issues with symmetry after that. She told me she advises people either none or both. The lady that fitted me for prostheses said even with reconstruction symmetry is an issue with a single mastectomy.

My double mastectomy was 10 years ago and I lost a lot of range of motion (ROM). I've never been past 85% since, but it's good enough for daily living. Initially, my arms froze a little more each day until about five days after surgery I couldn't move my elbows away from my side. It scared me. It was challenging driving to my appointments or anything else. I've had 2-3 months of PT on three occasions over the years to regain ROM and reduce swelling and tightness (lymphedema). I still have pain issues, but I have a nerve disorder so that is no doubt the reason. Each body reacts so differently. Like you, I'm just happy to still be here. I'm already imagining what your 100th birthday celebration will be like! đŸ™‚

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I am really surprised to hear of your arm difficulty. I never had a bit of trouble following my simple mastectomy, and only had trouble with that arm after I fell and broke the head of the shoulder joint in three places. I now have an artificle shoulder replacement. The only time I seem to have any edema is when I have blood draws. They have to use this arm, because the left mastectomy is off limits. When I had the Valve replacement they also had to use this arm, but very little after event even though they had to enter an artery in my wrist. Much easier then the groin. Interesting you have a nerve disorder. After all these years, I have Trigeminal Neuralgia. That is how they found the MGus. Routine testing. I have pretty much quit driving. My son has moved in to my home, and he takes me to all my appointments. I have gotten very lazy. I can still drive and have a license (eye sight is quite good), but I think it is smart not to drive unless I really, really need to. I do take high blood pressure medication which has a diuretic. My ankle swells considerably since I had the cancer removed from my leg, but I also have the hip and knee surgery and you cannot have that much surgery all on one side without some disruption of the circulatory system. The diuretic keeps the swelling down considerably. Have they tried any diuretics for your edema? Your kind words and good thoughts will brighten my day, and I look forward to my next "New Part".
Gind5009

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@gina5009

I am really surprised to hear of your arm difficulty. I never had a bit of trouble following my simple mastectomy, and only had trouble with that arm after I fell and broke the head of the shoulder joint in three places. I now have an artificle shoulder replacement. The only time I seem to have any edema is when I have blood draws. They have to use this arm, because the left mastectomy is off limits. When I had the Valve replacement they also had to use this arm, but very little after event even though they had to enter an artery in my wrist. Much easier then the groin. Interesting you have a nerve disorder. After all these years, I have Trigeminal Neuralgia. That is how they found the MGus. Routine testing. I have pretty much quit driving. My son has moved in to my home, and he takes me to all my appointments. I have gotten very lazy. I can still drive and have a license (eye sight is quite good), but I think it is smart not to drive unless I really, really need to. I do take high blood pressure medication which has a diuretic. My ankle swells considerably since I had the cancer removed from my leg, but I also have the hip and knee surgery and you cannot have that much surgery all on one side without some disruption of the circulatory system. The diuretic keeps the swelling down considerably. Have they tried any diuretics for your edema? Your kind words and good thoughts will brighten my day, and I look forward to my next "New Part".
Gind5009

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Thank you for the response @gina5009. Very nice that your son moved in with you. You raised him right. Relax and enjoy his help and company. At 92, you deserve to be spoiled!

Ouch with the shoulder. It must be a right of passage. I fell and broke my right wrist while I was recovering from the mastectomy and ovary/tube removal double whammy surgery. My 20 pound schnauzer totally fought off that 45 pound dog attacking in the dark. I should have stayed out of it cause I'm the only one that got hurt. With my right hand/arm now in a cast, that's when I learned my left hand and arm are just for looks and balance. Haha

My lymphedema isn't bad anymore, just the tightness and ROM issues. They never suggested diuretics. It mostly flares up if I do heavy house cleaning and overuse that arm. I'm supposed to do the daily lymphedema massage at home myself. But do I? Guess. It all flared up again when I had recurrent breast cancer removed my from chest wall and another lymph node.

I had to look up your TN and MGus. Neither sounds fun! I have HNPP (hereditary neuropathy and pressure palsies) and am one of the more extreme cases. Like you, I have a substantial collection of varied disorders. My brother once told me I should just get a body transplant. Sign me up!!! I hope you don't need any more new parts and just have lots of new joys!

When my great aunt hit 90, she was featured in Woman's Day magazine along with others in their 90s. It was one of those articles asking what they did to live a long, healthy life. I think a positive attitude, helping others and staying active for her. They should be honoring you too for powering through! You're like my little schnauzer who never let the big dogs take her down. It was all about attitude. She survived hemorrhaging at 3, mammary cancer at 10 and lived to be 16! She loved life and had a will to live. She was the love of my life! Keep enjoying those bright days!

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