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TNBC surgery options
karen1230
9 Posts

Had my preop consult with my surgeon today to discuss my upcoming surgery. My stage 3 TNBC tumour has responded well to chemo and we decided on a simple mastectomy with sentinel node dissection. I asked about a bilateral mastectomy and he’s willing to do it, but says it won’t affect my outcome or the chance of recurrence. In other words, he’ll do it for my peace of mind really. While my peace of mind is super important to me, I’m also thinking that a mastectomy is a pretty disfiguring surgery and I think I’d rather be symmetrically flat. I really need to think about this more and I think it would help if anyone here felt comfortable to share a similar experience and what you decided. Thanks in advance ladies. Be well.

5 Replies

@karen1230

Hi there, and welcome to the site. This really is a difficult decision and one that comes up often on the site. Like you, I was given the choice of having one breast removed. No one asked me if I wanted to have both breasts removed and I never thought of it.

I had a single mastectomy and no reconstruction. When I go outside, I wear a prosthetic breast (foob), which is heavy since I have/had large breasts. Not wearing a foob in the house is not really the best thing for me to do since my body is not balanced. Without really thinking about it, my body (back and legs) adjust to accommodate being heavier on one side than the other.

One breast with a foob also means specialty bras or regular bras with a pocket sewn into them. The foob can be warm in the summer and initially cold in the winter, until they invent some kind of foob warmer so it is nice and toasty before you put it on. (Yes, I am one of those people who can laugh about some of the oddball situations associated with breast cancer.)

There is also, like you said, the fear of recurrence in the other one. Also, if you know you have dense breasts (if you don't, it would be good to find out from mammogram results), it increases your odds of developing breast cancer and ironically makes it harder to spot breast cancer with just a mammogram. If you do have dense breasts, you should get supplemental screening in your remaining breast so that if you develop breast cancer, it can be detected early.

If you are wondering what it is like to have both breasts removed and not have any reconstruction, @ashcon and @kims1961 might be willing to share their experiences. Unfortunately, as I write this post, the tagging is not working, so these two people will not be notified that I have mentioned them in this post. I will come back to the post later and try tagging them again.

Also, if you click on any of the hashtags, you will be able to access all other posts that have been tagged in the same way. You can also click on the search icon in the top right corner and do a search of the site, you might find more posts that may help.

cancertakesflight

#mastectomydecisions #mastectomy #mastectomynoreconstruction #flat #Singleordoublemastectomy


Littlebeth
163 Posts

Hi @karen1230
I found myself in a similar situation to yours two years ago, diagnosed with TNBC stage 2B, grade 3 and facing a mastectomy after neoadjuvant chemo. At my first meeting with the surgeon, before my chemo had started, there was no discussion of a bilateral mastectomy. But I had a lot of time to think about it and listen to others who had gone through both procedures, some with reconstruction, some without.

In the end, I chose a bilateral mastectomy with no reconstruction. Peace of mind was a huge part of that - over the years I’d already had several cysts in what would have been the remaining breast and did not want to face more mammograms, ultrasounds or biopsies. I also had dense breasts as @cancertakesflight described. I guess I listened to my heart not my brain on the science of it all. TNBC is a scary diagnosis and it felt like I was doing everything I possibly could to keep it from coming back. That was important to me.

I also considered the aesthetics of it. I am older than you and, frankly, a 70 year-old breast does not look the same as a prosthetic and I was concerned about symmetry and weight distribution. Reconstruction was not a choice I wanted, but I do prefer to wear prosthetics and there are many different types on the market that work in a variety of situations, from exercising to “dress up”.

This is such a personal decision and we can only tell you our own stories. I was fortunate to have a very supportive surgeon who explained the implications but understood my choice. My surgery went well and I have no regrets. I would make the same choice again if faced with it.

You’ve been given you some good links to earlier discussions. I found reading about others’ experiences helped me feel comfortable with the option I chose.

I wish you well with your decision….Littlebeth

Wisesage
39 Posts
karen1230‍ like you I had stage 3 TNBC but did not have a response to chemo and cancer was well entrenched in my lymph nodes,which of course you don’t know pre surgery. But, having dense breasts and a history of regular mammograms that didn’t find anything or sometimes needed extra investigation, as well as invasive lobular that was well established before finding it, I decided on a bilateral for peace of mind and symmetry more than anything. Yes, research shows the outcome is no better. But I would prefer either 2 “breasts” or none than to deal with asymmetry on top of all the other worries…just my two cents. It is a lot, especially if you are facing more treatment and this surgery brings a longer recovery that may delay things…my oncologist was pushing for a lumpectomy so we could get on with radiation. I am glad I chose DMX with immediate reconstruction but could likely have chosen DMX no reconstruction but definitely DMX. Best of luck to you.
JenG
256 Posts

@cancertakesflight @ashcon

Here’s the tag you had trouble with. :) Kims is taking a break.

@karen1230 I’ve got nothing for you (previous caregiver) but I admire your courage in reaching out and asking hard questions. I hope you find some answers in these replies. Somewhere there is a video about @JustJan, talking about her experience, and it may help. @Lacey_Moderator can you help me with a link??

take good care,

jeng


ashcon
2194 Posts

@JenG
Thanks for the tag JenG! I've hd the pleasure of connecting with @karen1230 already and we're sharing stories and experiences back and forth.

Just reading some of these other posts here in this thread reminds me of the brilliant, caring and articulate souls that are on this site…. ❤️❤️❤️❤️

@Wisesage

@Littlebeth

@cancertakesflight

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