triple positive, node negative, and microinvasive--now what?
Hi.
I posted before when I was not sure if I had microinvasion and now everything is confirmed. I wondered if anyone is +++ and miccroinvasive out there. I think that my MO will not recommend further treatment beyond the mastectomy but I wonder if anyone else has been through this. I feel like the recent articles I've read say that T1mic should be treated more like a T1a-c cancer (which would mean chemo and anti-Her2) but I don't get the impression that the guidance has caught up with that. I've been seeing doctors at an NCI institution and it seems like they won't do anything not on the books. Do I get a second opinion? I am hoping for any kind of wisdom here.
Happy Holidays to you all!
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Hi @lemonwedge, There seems to be a bit of controversy with your diagnosis. Because you are also ER+ treating with endocrine therapy is often considered enough.
If you are not convinced that you should skip treatment for HER2+ get a second opinion somewhere else. You might get the same advice but you don't want to be wondering in the future if you did the right thing. All the best.
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Thanks for this @maggie15
This is a helpful article!
I guess I thought it would be clear but you are right, there is controversy around my diagnosis.
My MO did mention tamoxifen, but she also said it would only reduce my risk of recurrence by 1% —and it comes with its own side effects. I don't think I fully appreciated HER2+ when I was talking with her, but I've read more now.
Thanks for the insight about getting a second opinion. I think my biggest challenge is what kind of information I need to feel OK with moving forward.
Take care!
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Hi lemonwedge,
Can you go back to your MO, and ask her to explain to you in a bit more detail the rationale for recommending (or not) each treatment for your specific case, since you know more now, and are better prepared for that conversation? Going through the benefits and risks of hormonal therapy, chemo and anti-Her2 targeted therapy, separately and combined.
If tamoxifen will not reduce your risk of recurrence, what will? Does that apply also to other hormonal treatments (eg ovarian suppresion + AI) or just tamoxifen? And what is that risk? Is it negligible or significant?
I would start by that, and likely also ask for a second opinion somewhere else, for your own peace of mind. I did that when my MO recommended treatment, not because I didn't trust him, but more as due diligence, for my own peace of mind.
LaughingGull
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Hi @laughinggull,
Thank you for this. It has been really hard to get clear on how to make the next steps. I can absolutely schedule another appointment with my MO asking those very questions. I re-read the visit notes from last time and she said she would not recommend chemo or HER-2 therapy if my nodes were negative and that the risk for distant recurrence was 1-2%, so tamoxifen would be my main option. She said tamoxifen would reduce my risk by less than 1%. I think that I am trying to understand how HER2+ affects all this. The studies on microinvasive BC just don't have enough people to draw many conclusions on outcomes and prognoses (in my opinion), especially when you are looking at +++.
It seems like getting a second opinion would do a world of good. I would like to go to a very famous place close by, but when I called them they said they don't offer second opinions, and I'm not ready to move my treatment over there without meeting them first. Did you do a distance second opinion?Thanks!
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Hi lemonwedge,
My second opinión was in person but i could have done it remotely if needed. I just wanted a second pair of capable hands reviewing the plan and answering my questions.
Best of luck,Laughinggull
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@laughinggull Thanks for this. Yes, it seems like a couple or a few sets of eyes on one's information would feel more reassuring .
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@lemonwedge I'm curious what you ended up doing for treatment? I have high nuclear grade DCIS with microinvasive BC, and I'm also +++. I have seen a surgeon and opted for a lumpectomy and sentinel node biopsy, but that isn't scheduled until mid-February. She mentioned I'd see a radiation oncologist and medical oncologist after surgery.
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@luluvee I had BMX surgery with clear margins, so I won't need radiation. So far, I'm sticking with not pursuing additional treatment. Tamoxifen's potential side effects don't seem to make sense for my risk of recurrence, but I'm still feeling unsettled. I am thinking about asking if it would be possible to take 10 mg tamoxifen every other day instead of the full dose. I read a ton of articles on microinvasive bc and I am just not sure if it makes sense for me to do chemo and anti-HER2 therapy. I hope your surgery goes well and that you get a clear plan. It feels more complicated to me that is in a bit of a gray area!
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@lemonwedge @luluvee Hello, I'm also in similar boat. Large area of DCIS high grade with single focus of 1.3mm invasive which was HER 2+. Negative nodes. I had BMX (left had the cancer, right side preventive). Though I had positive margins, I did not get radiation (it was brought up with my MO but I didn't want to risk my heart). She told me that recurrence risk was 5%. She also did not recommend any chemo or herceptin. I'm approaching my year 2 this Feb post BMX and I am getting a bit worried as I know recurrence peaks at 3 years with HER2+. I basically have 6mo follow up visits with my MO but no further testing.
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@snm I can understand why you'd be getting nervous after two years. I know that because it's uncommon and there have been limited studies, there are differing theories about how to treat microinvasive cancer, but I am not sure I'll feel comfortable with only surgery. I'm having a lumpectomy so my surgeon has mentioned radiation and herceptin, but who knows what my MO will recommend.
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Hi. New here. Just this week I was told my breast cancer is estrogen+ and her2+. I've read just enough about her2+ to be scared. Next week I find out what my care treatment options are. My chart when going to get my full body scan and heart scan yesterday said PRE CHEMO, so my thoughts of surgery only (mastectomy - large mass) seem to not be on the table for me.
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@karenjsf It is scary! I hope you get the information and support you need to feel good about moving forward. I imagine that one good thing is that your treatment plan should be clear, which could be reassuring.
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@karenjsf that sounds tough. When do you get the results of your scan? I really really really don’t want chemo either, but won’t get a treatment plan for almost a month - I have surgery on Tuesday but don’t see the medical oncologist until March 11. Since my first suspicious mammogram was October 31, I’ll be curious to see if I have positive modes., I hope not.
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@Luvlee, the results of all my tests and scans are back. They are going to do sentinel node surgery on the lymph nodes, though, as this looks suspicious still. Why is your treatment plan so far out? Mine will be discussed with me on Tue in a 2-4 hour meeting with pathologist, surgeon, oncologist and I imagine my treatment will start very soon as my mass is large.
Sending you good energy for your surgery on Tue.0 -
it has been a bit of a perfect storm - it took a while to get a biopsy (had one a few days before Thanksgiving), it took two weeks to get the pathology report, then I was traveling, I couldn't get in to see the surgeon until January, I was traveling again, and then they couldn't fit me in for surgery until mid Feb. I have microinvasive DCIS so maybe there isn't quite the same sense of urgency.
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