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LCIS, ADH, ALH, Family History, Dense Breasts

Last week I had a central duct excision for bloody nipple discharge. The results came back today and show LCIS, ADH and ALH. I have a family history of breast cancer (my mother, twice IDC) as well as my sister (DCIS). My breasts are very dense and nodular which means i am constantly having ultrasounds. MRIs etc.

Given these factors, the risk assessment put me at a 57% lifetime chance of breast cancer (I am 41).

Would it be unreasonable to think about a mastectomy? I really dont want to go the hormal route.

Comments

  • cookie54
    cookie54 Member Posts: 653

    @emstep81 Ugh sorry to hear you have a strong history and have the constant imaging. Personally I don't think that is an irrational thought with the risk being over 50%. Have you spoken to a oncological breast surgeon for their opinion?

    I wasn't in the exact position as you but I had dense breast tissue and had a history of ADH. I wound up having 8 breast biopsies over 9 years which got to be very annoying. Anyhow as you know this may never turn into cancer. It took mine 9 years to per say develop into cancer. So I can understand your rationale, curious as to what an oncology breast surgeon would say.

    Wishing you the best.

  • sarahnh
    sarahnh Member Posts: 105
    edited August 2023

    On thing to keep in mind is, those risk calculations are very inaccurate — nobody is really sure what factors are relevant.

    People used to have mastectomies for LCIS, but I believe current evidence says it isn't helpful or necessary. I had dense breasts and multiple Birads 4 lumps (some of which turned out to be LCIS) for which I chose surveillance (instead of surgery) for 30 years. I did end up with breast cancer, and had a double mastectomy. In retrospect, a mastectomy all those years ago might have prevented my current cancer, but I'm still glad I didn't do it. Mastectomy is an extreme surgery, leaves you at risk for lymphedema and other problems, and "reconstruction" will never look or feel normal. It's not like just getting implants!

    But of course only you can decide this, and I think it's great that you are asking around, and getting a variety of opinions and experiences! Regardless of your eventual decision, I hope you will keep having ultrasounds for any new or changing lumps. If I'd done that, my cancer likely would have been found earlier. And possibly ask for genetic screening, given your family risk?

  • shanagirl
    shanagirl Member Posts: 333

    @sarahnh yes, I think surveillance is the best decision, at least for me with the LCIS., I have enough goin on right now, and hopefull the strong targeted therapies I’m on would keep it from developing into anything other than LCIS.. 🩵

  • kaynotrealname
    kaynotrealname Member Posts: 361

    Emstep81, it is reasonable to do whatever you can to be at peace. My mother had ovarian cancer 8 years ago and although it took me awhile to get genetically tested, I did knowing that if I came back positive I would seek a double mastectomy and never look back. Well I didn't come back positive. Still got diagnosed with breast cancer two years later. All I could think was seriously??? But also at the same time I didn't miss a fucking beat. My doctor called me on a Tuesday to ask me to come in to discuss my biopsy results, I was already prepared to hear cancer since the radiologist told me that's what she expected so I made her tell me over the phone what the results were. Because of my prior research with my genetic testing I already knew I would want to go to the NCI hospital closest to me. She told me at 11:00 in the morning. By the time I came in to talk to her at 2:30 I had already called the hospital and made my appointment to be seen by a surgeon, oncologist and radiologist two days later. When I meant with I told my surgeon I wanted a double mastectomy with a DIEP reconstruction on the same day (although we couldn't time the diep since the plastic surgeon wasn't available in the time frame I wanted my boobs off in). Once I explained my rational she agreed it was a good move. Anyway, she scheduled me for three weeks out, I got diagnosed with covid and although asymptomatic I had to pause my surgery for another 10 days, and by 35 days after diagnosis, 54 days after my mammogram, I went through my double mastectomy. Everything else followed like clockwork. So in saying that, I could have gotten a lumpectomy if I wanted to. But I didn't feel like having my cystic, very dense massive breasts run through a machine every six months knowing that I would probably produce something else that was either cancer or looked like cancer and then have to get it check out. Fuck that. Never regretted it and I will not ever have to see a routine mammogram again. That's worth pretty much everything to me. So find what gives you peace and go for it.