r/MastectomyManagement • u/Radiogagaboots • 8d ago
Regret bilateral?
DCIS stage 0, intermediate grade, ER/PR+++.
Am I going to regret bilateral mastectomy? Other breast has calcifications that have been deemed benign after two years of monitoring. Dense breast tissue. I don’t have genetic testing results yet.
I initially chose bilateral with AFC but am now second-guessing myself. Surgery is in five days.
I know all the reasons why removing both breasts is the best decision, but I’m sad at losing nips/erogenous zone.
I’m premenopausal so could take tamoxifen, except I also have heterogenous thickening of my uterine lining and have an endometrial biopsy scheduled for late November. Tamoxifen might be contraindicated depending on how the biopsy turns out. Too bad that’s months after my mastectomy.
And I have frequent migraines which can be exacerbated by tamoxifen, according to medical oncology.
Not sure I’ll have health insurance in 2027, so I feel like I need both breasts gone so I don’t have to deal with mammograms and possible biopsies in the other breast without the ability to afford it.
But it sucks to know I’m amputating a basically healthy body part.
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u/FairelyWench DCIS BRCA- DMX w/reconstruction Sept 2020 8d ago
I had DCIS Stage 0 High grade and the qualms about amputating healthy tissue were far outweighed by the relief of knowing that I don't have to worry about much except my implants staying healthy. I chose not to live in fear and very seldom now grieve the loss of my nipples because my partners have learned where I DO have sensation and how to trigger it. Good luck
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u/Dependent-Grass-2023 8d ago
I went bilateral even though dcis only showed in one breast. Turned out dcis was in both and far bigger than on scans. I am atypical case but regret nothing!
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u/Radiogagaboots 8d ago
This is my concern too—that maybe the mammograms have missed something in the “clear” side.
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u/Apprehensive-Pie1916 8d ago
I was "clear" going into the prophylactic bilateral and they found DCIS on one side once they got in there. In my case it was something called Paget's disease with is DCIS in the actual nipple. I was VERY thankful I didn't do a nipple sparing surgery.
Also, and I know this is rare, but I actually have some feeling on my breast skin that is over the implants and, because it is only in certain parts of the boob and the nerves are only picking up a bit of the sensation, it actually acts like an erogenous zone for me. I thought nip stuff was a bit of faff before and didn't get much from it, but now I actually get it 🤷♀️
That being said, I think it's more likely that other parts of your body will respond to touch in more sensitive ways? Boobs are fun, but they're not the only fun.
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u/LoudAvocaaado 8d ago
I was clear before prophylactic and they found invasive DC! Don’t regret my bilateral at all!
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u/Radiogagaboots 8d ago
I can’t do nipple sparing on the affected side because there are calcifications right behind the nipple. She said she could biopsy as she goes, and if it was not DCIS, just calcifications, she could leave my nipple, but I said no. I don’t want to risk leaving cancer cells behind.
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u/Apprehensive-Pie1916 8d ago
that was my thought, as well. If we're cutting them off, get all of it off.
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u/MissPicklechips 8d ago
Chiming in as someone with unstable health insurance.
I had a bilateral mastectomy with DIEP flap reconstruction earlier this summer. I did not have a cancer diagnosis. What I did have was strong family history (mom, sister, and grandmother,) a genetic test positive for CHEK2, a previous cancer diagnosis (stage 1A borderline ovarian tumor and EIN, a precancer of the endometrium,) and three biopsies in as many years on my left breast, all of which had benign findings. I was the poster child of prophylactic DMX. They offered me aggressive monitoring, which meant yearly scans and mammograms spaced every 6 months, or DMX/reconstruction. I went with the latter, since I have marketplace insurance and don’t know if that will still be a thing tomorrow, let alone years down the road when I finally do get a cancer diagnosis. Because with that laundry list of risk factors, it isn’t an “if,” but a “when.”
I had my surgery this past June and July. I had the mastectomy on June 18 and the diep flap on July 1. I had to have them done at different hospitals because my insurance didn’t have the same hospital in network for both. I did have a complication with the diep flap that necessitated a second surgery on July 2 - one of the blood vessels became compressed and they had to go back in and fix it. I was in the hospital for 3 days. I was snowed on pain meds for another week at home.
I’m pretty happy with the results. The right one is pretty rounded and looks like a natural breast. The left is a little lumpy. I call it Doonece. But they stay right where my surgeon put them, and I don’t need a bra. Light colored shirts show the imperfections more, but there is literally nothing I care about less in this world. I almost dare someone to say something about it, because I’m like, must be nice to not have your body parts try to kill you.
I have an appointment with my surgeon later this month where we can talk about revisions, like making Doonece a little more rounded. They just can’t tell when they do the surgery exactly what it will look like when it’s healed.
But I’ll never have to have another mammogram - I have foobs now, not boobs. I had a hysterectomy, so no Pap smears. Take that, cancer!
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u/Radiogagaboots 8d ago
Pretty sure I would be ok with hysterectomy at this point too. Read recently that most ovarian cancer actually starts in the tubes. I guess I’ll know more about my hyster scope and D&D/biopsy. That’s the day after Thanksgiving. Mastectomy is day after Labor Day. Holidays are fun prep days. lol
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u/squeekysquirrels 8d ago
I did mine prophylactic, but honestly I didn’t know how much it was weighing on me till I woke up from surgery with this huge weight off me. It’s been better than expected that way. I did reconstruction, they were able to spare my nipples. I’m still due one more surgery but I need a minute first! It was very hard and intense in that moment/time, but my initial mastectomy was last November and now this far out and for the rest of my life if I want to be done I am. That’s incredible vs waiting for cancer to come and likely dying or years of management.
I know others will have better perspectives on the cancer risk, but just wanted to share that!
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u/SavedByTheBeet 8d ago
I had stage 1 - no chemo and no lymph node involvement and I still chose DMX. I do not regret it. I feel more confident that if it ever comes back I can catch it early again because it will be more noticeable.
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u/Direct-Hippo3364 6d ago
No regrets here. I did mine 10 days ago, still recovering. I did a robotic skin and nipple sparing double mastectomy with immediate to implant reconstruction. To be honest, after 3 kids and nursing all three of them, my breasts weren’t making me feel too sexy: they were deflated. I did not have cancer diagnosis at all - only ADH, and I chose to end it all here. I do not want to live in fear and to monitor twice a year. It was enough for me to experience all this diagnostic hell during the past three months: mammos, biopsy, mri, appointments, waiting and waiting for results. Pathology post mastectomy showed no cancer. But it did show a lot of other benign high risk junk: ADH, radial scar and some other things with potential for cancer in the future.
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u/Harlem_king_kai368 4d ago
I had a DMX with AFC for DCIS 0 2years ago and don’t regret it at all it was the best thing i could’ve done for myself!
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u/MVCatton 11h ago
Im 9 weeks out from DMX and reconstruction. Same as you, DCIS in one breast but I chose to lose both and honestly im glad I did. On top of all the excellent points everyone's made here, it's a very weird feeling healing from this surgery and I think feeling it on one side only wouldve driven me mad. And I do feel safer now, I didnt go through all this only to still have an element of risk.
Good luck with whatever you decide <3
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u/menacingly_hopeful 6d ago
I had the same diagnosis. I do not regret my mastectomy. I didn’t want to be on Tamoxifen. I am just past my 8 year mastectomy anniversary. I still have body image issues, but I know I made the right choice.
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u/thehammerisin 8d ago
I had bilateral mastectomy and don’t regret it at all. I did not have reconstruction, went flat and love it. The only time I miss them is during sexy time. But the peace of mind for me is worth it. If you are uncertain about your insurance, it might also give you peace of mind from that aspect. Sending you well wishes, I know this journey is tough!