Uni mastectomy 2021, want other side out now
I had IDC in 2021 and had a uni mastectomy with rads and chemo, currently on AI and ovarian suppression. I find I'm having more anxiety about recurrence and I'm not sure why. Perhaps it partly has to do with recently finding out that a family member is now dealing with her new diagnosis of IDC. I'm also seeing that the reconstruction results are making me self conscious. The healthy breast sits lower than the implant and I feel like I have to hide this at work by clipping my work badge over that side. Has anyone had regrets after a uni mastectomy, and how easy was it for your surgeons to agree to getting a contralateral mastectomy + recon for symmetry? (When I was dx two years ago they said I shouldn't get a bilateral mastectomy for symmetry purposes). I'm still young but I feel so unattractive with this breast asymmetry, crazy chemo hair mullet, and 25 pound weight gain since being diagnosed in 2021.
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Hi @toutvabien , I had a bilateral mastectomy right out the gate, with a flat closure and no reconstruction, so our situations aren't necessarily the same. But I deeply understand the symmetry aspect. In fact, that's a huge reason I had the bilateral mastectomy. My right breast had two tumors (ER+ PR+ Her2-) and extensive areas of DCIS, and I was small breasted, so there wasn't really an option for lumpectomy. My breasts were a little asymmetrical already and had a lot of sag, which I really struggled with, so it was clear to me pretty immediately that I would be advocating for them both to be gone. I couldn't imagine having one flat side and one saggy side. And for me personally, I am not interested in reconstruction, it's just not me. I had heard horror stories about people being talked out of or denied a bilateral mastectomy when only one breast was affected, so I went into my surgeon prepared for fighting for my rights. Luckily she didn't even bat an eye and we discussed the procedure and the type of cuts she would likely use. Although my surgeon was lovely and supportive, there is some extra tissue on my right side that makes for a poochie lil "boobeeny" as I like to call it. I am certain no one but me would ever see it through my clothes, but it drives me crazy and I am going to ask for a revision.
I think my point here is that this is such a personal experience for each of us and you get to advocate for what feels right and best for you. And you have the Women's Health and Cancer Rights Act of 1998 on your side.
I don't miss my breasts. I do miss my nipples. They provided me with a lot of sexual pleasure and exploring what my sex life with my husband will look like in their absence is going to be an adventure. It's all still very new. I had my diagnosis in late January this year. I had surgery in March. My oncotype dx was 35 so I started chemo in April and I'm actually getting my last infusion of chemotherapy today!
(a side note is that the pathology after the double mastectomy found there were areas of atypical hyperplasia in my left (noncancer) breast - and although that doesn't necessarily turn into cancer, I do have a CHEK2 mutation, so I feel good about not having that potential ticking time bomb - I joke that I had grenades strapped to my chest)
So, my advice would be to be who you are. Own yourself unapologetically and do what feels best for you.
All my very best to you!!
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Hi toutvabien,
I also had a unilateral mastectomy initially. My breasts were very dense, and I found my tumor, and an enlarged lymph node myself, after a clear 3D mammogram and exploration three months before. And after 20y of regular breast cancer screening, starting in my 20s.
Since my tumor was on the bigger side, I had chemo before surgery. Surgery revealed more cancer left than expected, more cancer than revealed by pre-surgery screening, including an all-clear MRI. The surgery pathology also showed limited effect of the chemo in my very aggressive cancer. Aesthetically, the results were not great either and I could see that my remaining breast would sit lower than the reconstructed one.
That's when I decided that I'd rather remove that breast too. I was sad to let a healthy breast go, but I didn't want to live with more useless (useless for me bc of extremely dense breasts, I am not implying mammograms are useless) screening mammograms that had proved completely futile. My concern was the impossibility from any screening to detect cancer on the other side, given how dense my breasts were.
My oncologist and surgeon were both very supportive and the insurance approved the second mastectomy. In terms of volume, my breasts are even now, and I live with less fear -although I still miss my breasts and wish I didnt have to remove them.
Best luck with your decision,
LaughingGull
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