Risk of Hunched Back following Double Mastectomy without Reconstruction?
A few months ago I found out that I have a couple of different additional risk factors for breast cancer and I had a lumpectomy to remove some calcifications containing atypical cells. My doctor is recommending chemoprevention medication and observation. But in the middle of dealing with these breast issues I had a routine MRI before my lumpectomy and was told that there were no additional concerns found in my breasts on the MRI, but it happened to show that I had a tumor in my lung.
All this has been unexpected, since I’m 42 yrs old, completely healthy, physically active, (have never smoked in my life) — and I never had any symptoms at all before my lung surgery (so finding it early was a blessing from God). Anyway, I eventually learned that I had a very rare kind of lung cancer called Mucoepidermoid Carcinoma, I was able to navigate the process of getting referrals authorized to be treated at the local university hospital because my medical providers didn’t have enough experience or the higher levels of training needed for this rare type of cancer, and 1 week ago I had surgery to remove the upper left lobe of my lung. The surgery went well, and now I’m just waiting on the final pathology results from the surgery. Before the surgery my surgeon said he thinks that I will not need chemo, and will just be able to monitor with CT scans, but the final decision on my treatment will come after pathology comes back and we discuss with the surgeon and the medical oncologist.
Anyway, when we learned about my lung cancer all the doctors agreed we should focus on the lung cancer first, and hold off on any treatment for the breast issues until afterwards. So now that I’m a week out from surgery and recovery is going pretty well overall, I’m wondering about the next steps. After the rollercoaster of lung cancer, I have been considering a double mastectomy — even though my additional risk factors for breast cancer are currently just risk factors (benign cells), I am concerned about waiting and watching and possibly having to start all over with detailing with cancer again in the future, and in the meantime I would have to deal with possible side effects from long term medications and scans all the time.
Anyway, if I were to choose to do a mastectomy, I would not do reconstruction. I would be fine going flat in some cases, and in some cases I think I would be likely to choose to wear a bra with breast forms. But the other day one of my husband’s patients was sharing her similar experience with him: she chose to have a double mastectomy without reconstruction. But she said that she has needed to wear something (I assume some kind of breast forms) because if you just go flat the difference in the weight that you used to carry in your breasts can cause your back to hunch or have problems with balance or symmetry in your back. I had never heard of this potential issue before. When I search online I find very limited information on these possible back problems caused by this. So I thought I would come here to find out more.
Can you tell me what I need to be aware of with potential back problems or balance problems caused by not wearing forms following a double mastectomy without reconstruction? Is this common? How serious of a problem is it? Are there methods to avoid it? And are there other potentially serious physical problems that I need to be aware of in regards to considering this surgery?
(Because I am a very active person, and I really don’t want to do something that may limit my ability to do things like get outside and go backpacking in the back country, go scrambling or bouldering, etc. I want to continue to be free to do everything I could before. So if there are risky complications that could limit my physical ability I’d really like to be aware of them as I make this decision).
*Also, seeing as I’ve already hit my insurance deductible this year, if I’m going to do a mastectomy it would be financially wise to do it before the end of 2024. So I’m trying to hurry up and make the best decision possible in a relatively short time frame. Thanks for any suggestions!
Comments
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Hi, sorry about all this.
I will share my experience, but off course every one is different!
I had a double mastectomy with no reconstruction, and no one told me to do some phisiotherapy once the scar was healed.
So I did had pain to my back for quite a while, starting about 4 months after the operation.
Took me a good while guessing the reason...it was the mastectomy.
When I understand what it was I went to a phisiotherapist and did a lot of exercises and in about 4/6 months I was ok again.
I think if you do preventive back streinghtening exercises this is not going to happen to you, but I will definitely talk with a phisician.
I didn't have any balance problem or humpback.
Another problem I had was that the scars got adherences on my chest. This was very annoying.
But again nobody told me nothing, so I didn't stretch my arms because i was afraid of damaging my scar, instead i shoulded of! (After it was healed of course). But with some stretching and cheast massages it was all solved.
So if you plan a good reabilitation ahead, and don't wait for months after the operation like I did, I think you will be ok!
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I had a double mastectomy without reconstruction 2 years ago this month. I have not had any back issues of any kind. I did the recommended stretching exercises after surgery and have full range of motion, although there is a slight tightness in my shoulder on the cancer side. I originally thought I would wear breast forms, but have never bothered. People literally don't notice that I am flat. I was a small B cup, so if you are larger it might be different. I have no limits in my physical activity and pick up heavy boxes daily at my job.
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@mom5boys, welcome to Breastcancer.org, and thank you for posting. We are glad to hear your lung surgery went well, considering everything you've been through.
It's good to see that you’ve already received responses from other members who can help guide you. Here is an article from our main site that might provide helpful information on your situation:
We wish you all the best as you navigate this decision. Please know that we're here to support you!
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