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Topic: Am I at "high risk"? If so, what then?

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

Posted on: Nov 27, 2020 12:14PM

sasamat wrote:

This is my first post, although I've been lurking and reading a lot for months. I'm in the midst of what feels like an incredibly slow process to sort out an abnormal screening mammogram, in September (2 areas of microcalcifications).

Next came diagnostic mammogram, which was deemed to BIRADS 4a (late September). Then stereotactic core biopsies of both sites (early October). One is now called "fibrocystic change" and they say it's OK. The other is ADH at the very least and described as on the ADH to DCIS spectrum. They also feel like they undersampled that site, even though they took 18 cores, because they never saw microcalcifications in the cores and there are residual microcalcifications on the post-biopsy mammogram.

I had bilateral ultrasound last week, but won't hear my results 'til Monday.

I have a surgical excision of the ADH site on Dec 15.

Other relevant background: My mom was diagnosed with breast cancer at age 69. It was triple negative, detected on a mammogram. She opted for double mastectomy (+ chemo, no rads) and a second early cancer or pre-cancer (she can't remember which) was found on the other, "prophylatic" side. I also have BIRADS D dense breasts and that doesn't seem to be changing/decreasing. I'm 50 now, been getting annual mammograms since 40. I am called back half the time, but this year is my first biopsy. Every mammogram or ultrasound tech who images me comments on how very extremely dense I am. I have no concerning gene mutations (did the Invitae high-risk breast and ovarian panel).

I'm a biostatistician, so have of course been feeding my facts into various risk calculators. This site won't let me post any of the links :(

The Tyrer-Cuzick a.k.a. IBIS model returns a lifetime risk for me of 42%.

The Breast Cancer Risk Assessment Tool (NIH/NCI Gail model) returns a lifetime risk for me of 42%.

The Breast Cancer Surveillance Consortium Risk Calculator returns a 5-year risk of 7% and 10-year risk of 14%.

My impression is that the overall message is "high risk", yes? This is obviously much higher than for "average" woman and I've found some data on the distribution of these scores in large populations and mine are basically off the chart.

I'm asking because I'm trying to organize my head for what I will do once the pathology comes back from my open biopsy.

If I only have ADH, I am worried that I will not be followed carefully enough in the future. In British Columbia, Canada, they seem to have no recognition of "high risk" unless you have BRCA 1/2, which I don't. There is no high-risk screening program except for hereditary cancer. For example, I will not be screened with MRI. But I think that's how I would be followed in the US in Europe for me (?). I think I will be able to get an ultrasound annually now.

If I have DCIS, I would seriously consider a bilateral mastectomy, although I recognize I am definitely getting ahead of myself there. But I also gather that there's a decent chance DCIS will be the diagnosis.

I'd love to hear if I'm right to perceive myself as very high risk at this point. And how someone like me would be followed in other health care systems.
ADH, surgical excision 2020-12-15
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Dec 26, 2020 01:14AM sasamat wrote:

I got good news 2 days ago! The pathology from my surgery came back and the diagnosis remains ADH, which they believe was excised with good margins (>= 3mm). The specimen also shows sclerosing adenosis, columnar cell change/hyperplasia, and flat epithelial atypia.

At the same time, I went in for the lymph node biopsy and they started by re-imaging my whole axilla. The node that looked a bit odd on ultrasound a month ago looks completely normal now and they decided to not biopsy anything. So I guess that confirms that the October biopsies caused some reactive nodes. I think the same process is starting up again in my armpit (surgery was 10 days ago), but now I know it's probably just inflammation.

I've spoken to both the surgeon and my PCP by phone and will have more proper visits in January. I know we'll discuss surveillance and maybe trying a low dose of tamoxifen to see how I tolerate it. This is a pretty interesting paper re: a randomized placebo-controlled trial of 5mg/day for women with ADH, DCIS, LCIS. This dose seems like it might have a good risk vs. reward profile.

Randomized Placebo Controlled Trial of Low-Dose Tamoxifen to Prevent Local and Contralateral Recurrence in Breast Intraepithelial Neoplasia, DeCensi, et al. DOI: 10.1200/JCO.18.01779 Journal of Clinical Oncology 37, no. 19 (July 01, 2019) 1629-1637.


https://ascopubs.org/doi/full/10.1200/JCO.18.01779
ADH, surgical excision 2020-12-15
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Dec 26, 2020 10:18AM LivinLife wrote:

So glad you received good news from surgery path! No surprises helps a lot too! Thanks for letting us know! Glad you will have good monitoring going forward as well....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Dec 26, 2020 11:17AM moth wrote:

Good news, thanks for updating!

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole)
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Dec 26, 2020 11:25AM Beesie wrote:

sasmat, that's great news! Thanks for letting us know.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 26, 2020 10:35PM sasamat wrote:

Thanks to all who have weighed in. Reading all sorts of information and experiences here has been incredibly helpful. I'm relieved at the current outcome, but I also know I have lots of imaging in my future and maybe more biopsies, etc. I want to be prepared to handle this with less anxiety, which accomplishes nothing. This community provides so much inspiration for productive ways to "buck up" and I'm thankful to have found it.

ADH, surgical excision 2020-12-15
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Jan 12, 2021 04:16PM sasamat wrote:

I've had follow-up visits with both the surgeon and my primary care doctor now. I'm not having pain at the site anymore and, so far at least, it looks better than I expected.

Based on a referral from the surgeon, I will see a medical oncologist next week to discuss the possibility of chemoprevention, e.g. low dose tamoxifen, or other risk reduction measures. I did a bit of research and she doesn't seem like someone who specializes in breast cancer. But is that even a thing? Do MOs have specialties? Also, is this splitting hairs, i.e. any MO is likely to be up-to-date on such matters?

I'm also having a bit of a struggle scheduling future imaging. My next screening will definitely be a diagnostic bilateral mammogram, followed 6 months later by bilateral screening ultrasound, and so on and so forth. This is agreed upon. But the admin scheduled this to begin in November of this year, which will be 14 months after my last screening mammogram (Sept 2020), 12 months after my bilateral ultrasound (Nov 202), and 11 months after my surgical biopsy & excision (Dec 2020). Doesn't it seem wrong to leave such a large gap? I think my doctor is going to help straighten this out, fingers crossed.

ADH, surgical excision 2020-12-15
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Jan 12, 2021 06:57PM Anxiouscanada59 wrote:

Hi Sasamat,

are you Sasamat because of the street in Vancouver, in which case I am Blenheim. I too am in Vancouver BC and was diagnosed with ADH a year and 3 months ago...excisional removal was done in January 2020 and I have been to see BC Cancer. Have been on Tamoxifen since March 2020, 20 mg...the hot flashes had been driving me mad, so approx 3 months ago, I switched to 10 mg. its tempting to reduce it even further to 5mg, based on the the DeCensi low dose study, but I am not sure... in the meantime, I don't sleep well, so I take a very minute dose of sleeping pills. as of last week, I am on Gabapentin to reduce the hot flashes somewhat....still not sure... would love to chat some more.

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Jan 12, 2021 07:10PM moth wrote:

sasamat, I'll send you a pm

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole)
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Jan 12, 2021 07:19PM AliceBastable wrote:

20 mg is the standard dose of Tamoxifen after cancer surgery, so a low dose would probably be 5 or 10 mg. Since it's just a hormone blocker, it seems strange to hear it called a "chemoprevention."

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jan 13, 2021 07:23AM LivinLife wrote:

Just glad you're working with your doc on the timing of scans.... If something needs to happen sooner than what's already scheduled hopefully your doc can make that happen....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Jan 13, 2021 11:09PM sasamat wrote:

Hi @Anxiouscanada59, yeah you understand my name, so I guess I could run into you at the grocery store!

Interesting that you're dealing with the same system, referencing the same study, and you ended up on 20mg. Was there a discussion of the 5mg dose? How did doing (well, starting on) 20mg tamoxifen come about?

ADH, surgical excision 2020-12-15
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Jan 22, 2021 12:52AM sasamat wrote:

I met with the oncologist earlier this week. Definitely the most satisfying doctor's visit of this whole episode so far, in terms of feeling like the whole situation is being appreciated. I didn't feel dismissed, which was a relief. It was the longest and most detailed conversation any medical professional has had with me and included the same risk calculations I had already done, eg Gail model and others, coming to similar conclusions. She thinks trying low-dose tamoxifen is worth a trial (5 mg/day). The benefits likely outweigh the downsides. So I will pick up that prescription tomorrow and see how it goes. I have a follow up in a month with her, to discuss any side effects and sort out the imaging schedule, which remains a bit of a question mark. Jury is still out whether I might go on some high-risk screening protocol that includes MRI. Questions are (a) would it be approved w/o BRCA 1 or 2 mutation and (b) do I really want to go there?

ADH, surgical excision 2020-12-15
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Jan 22, 2021 04:10PM LivinLife wrote:

You seem really confident and comfortable with how you are proceeding at this point. I'm soooo glad - that is so important!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right

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