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.

@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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@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! 🙂

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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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@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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@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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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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@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. 🙂

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@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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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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@californiazebra

How frustrating to go through all those surgeries with no results. The frustrating part about the side tissue is it wasn't there before the mastectomy. They told me it happens when they remove breasts and unsupported remaining tissue then falls to the sides. The cosmetic surgeon warned me before the mastectomy that that is the #1 complaint from women post mastectomy, but reconstruction would pull that tissue back around to the front. He called them side boobs. I thought it was swelling after surgery and was shocked when it never went away. I thought it was really insensitive when my former oncologist told me "we call those dog ears" and chuckled. I felt like saying, "Is that helpful and are you 12?" If your wife has that excess now, they can go back and remove it -- sadly another surgery. I can't do that because it would leave keloid scars on my sides that would be so painful with my arms rubbing on them. Wish I could. It adds 4" to my chest circumference causing me to buy a larger size top.

Let me say that I think you're a wonderful husband for supporting your wife in her decision to go with prostheses. You're also wonderful for being on this group chat trying to find ways to help her. Thank you for being you. Blessings to both of you.

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Supporting my wonderful wife is easy. BTW she has the same tissue on the sides.

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