Am I at "high risk"? If so, what then?
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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
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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....
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Good news, thanks for updating!
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sasmat, that's great news! Thanks for letting us know.
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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.
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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.
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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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sasamat, I'll send you a pm
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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."
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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....
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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?
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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?
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You seem really confident and comfortable with how you are proceeding at this point. I'm soooo glad - that is so important!
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I'll keep posting, because I've certainly found other people's narratives helpful.
I had the 1-month follow up with the oncologist. I'd say I either have no side effects from the tamoxifen or they are very mild. Maybe there have been mini hot flashes? But we've also had spells of very cold weather lately and we have crappy windows, so I wear a lot of clothes inside. Then I start to cook or something and realize I'm hot. So it could just be situational. In any case, we agreed it made sense to continue with the low-dose tamoxifen.
My PCP also called recently, which was great! She had spoken to Dr Paula Gordon about my case. She is one of the radiologists at two of the radiology clinics I've had scans or biopsies done at lately and she's a great advocate re: breast density here in Vancouver / BC / Canada. As a result of this conversation, my imaging will resume at the 6 month mark (vs. 14 month), which means my next mammogram is in late March (vs November). Feels like the previous incident just ended ... but this is also exactly what I asked for (close follow-up), so I am not complaining.
It appears that I may get a screening MRI after all, due to my overall risk (~43%) and history. Probably this fall, around the time of the next ultrasound. In any case, nothing else will get firmed up until the March mammogram has been interpreted.
At times last fall, I felt like things were going extremely slow and I worried that the follow-up here would be insufficient. But at this point, I feel like all the right things are happening, which is calming.
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Glad you're doing all right with the medication sasamat. Sounds like other things are coming together with providers communicating and timing of scans! Great! Glad you checked back in - likely good for you to write things out and then helpful to others as well like you stated... good stuff!
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