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Topic: Meeting with Oncology tomorrow

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jan 13, 2020 10:16PM

RunningLibs wrote:

Quick history: 2 masses containing ADH excised from right breast in November 2018 (according to path report, ALH according to other doctor’s report, so who knows at this point), 2 more suspicious, masses in right breast found in May 2019, which led to an MRI finding a large benign mass in left breast (which was biopsied and a clip left in it by new doc in July 2019). Genetic tests in December showed no mutations. LifeTime risk calculated by High Risk Clinic at 42.6% (but is probably a little higher now that I have give docs a more complete family history. I have extremely dense breasts... to quote me doc “You’ve got a lot going on in there.

Basically, I was given three options: Tamoxifen, prophylactic double mastectomy or continued surveillance.

I hate all three options. I’m angry that I’m evening having to make this decision. I hate the idea of being on medication for five years that essentially puts me into menopause. I can’t seem to find anything that will tell me definitely if my body will re-regulate afterwards (I’d be 46 at that point), only to have to go through menopause again. But I don’t want to be sidelined from my life to have and recover from surgery But mentally I am fed up with living life doctor’s appointment to doctor’s appointment.

Anyone else in similar circumstances that would be willing to share their perspective? Thanks!

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Jan 13, 2020 10:51PM Lea7777 wrote:

Hello RunningLibs and sorry you find yourself in this situation. I am in a similar situation but with more atypia than you and I was post menopause when the various abnormalities were found. Hopefully someone closer to your situation will respond.

First on the calculated risk. The Tryer Cuzick model, if that is what you used, WAY overestimates the risk per every "breast professional" I have dealt with, totaling about 10. But it is used because those high numbers help get you an MRI covered by insurance.

Unless your family history has close family members with breast cancer, a prophylactic double mastectomy would likely not be recommended. You can research this yourself to see that it is not the recommended course of action for ADH and ALH. Still, some people opt for it and are satisfied.

The most commonly recommended management plan by oncologists and medical professionals in breast clinics (again assuming no strong family history) would be Tamoxifen since you are pre-menopause. There is now a low dose option of 5 mg/day instead of 20 mg/day that you might want to discuss with your doctor. The most commonly followed management plan by women with atypia is surveillance only. Depending on the source, I've seen about 10% to 30% of women opt for the drugs. Most do not. I am taking a drug (one available only to post-menopausal patients).

My approach to the drug(s) was give it a try and see what happens. If it is awful, I'll quit. Some were awful and I stayed on them a couple of weeks or less. One of the drugs has been ok.

If you go the surveillance route, see if you can get an annual MRI in addition to the mammogram. A 3D Tomosynthisis would be a good choice. Maybe you already are getting this kind because of dense breasts.

Good luck to you.

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Mar 5, 2020 08:56AM - edited Mar 5, 2020 08:56AM by Utahmom


Met with Oncologist and genetic counselor in joint meeting. They bumped me up from 30.9 to 57% yesterday. Ssid the model ran in November was wrong. Now, really thinking through the obvious.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH

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