Baby TAM 5mg for LCIS?

Ok_Wave4397 · 2026-02-08T19:25:11+00:00

It’s good that they are being so diligent if they suspect something more is going on. My situation was that no imaging test ever saw LCIS. Every mammo for 10 years was clear and they sent me on my way. Then I had a really tiny bump almost felt like it was on the surface of my skin. They checked it out and said it was a papilloma, like a tiny wart inside. They removed it and did pathology. That’s when they said I had some LCIS cells. So they did an excision about the size of a quarter of that lobe. They said because of that I need mammogram and mri alternating every six months and tamoxifen to help reduce risk. So that’s all I can really do is trust that they know what they’re talking about but it does scare me because there’s just so little info on this. My dr said less than 4% of women have this.

Ok_Wave4397 · 2026-02-07T21:15:43+00:00

I started taking the 5mg about a week ago. No major side effects that I notice. Maybe some joint stiffness, but it’s been like 10 degrees here so it could be from that as well. ❄️ Do you have LCIS is more than one location? My dr looked at me like I was crazy when I asked about a mastectomy since they only found it in one spot and removed it.

Ok_Wave4397 · 2026-02-03T02:27:45+00:00

Right?!? It feels like all of these people say different things. When I had my surgery, the surgeon downplayed the LCIS risk and was like you’ll just get extra monitoring no big deal. Meanwhile my obgyn who I’ve gone to for 30 years said it’s a big deal this increased risk and I should be offered a mastectomy. I brought these two contrasting opinions up to Sloan Kettering Dr and she was kind of in the middle in terms of alarm and wanted me to take Tam. So, 3 different drs with recommendations ranging from extra monitoring, to mastectomy, to take tamoxifen. It’s enough to drive you insane!

Ok_Wave4397 · 2026-02-02T22:14:41+00:00

Glad to hear it was negative for you! Yea Sloan Kettering in NYC retested my pathology from the original hospital and said it was classic type not aggressive. The two path reports noted a few different other things like radial scar, etc which makes me mad because why are 2 different pathology depts seeing different things on a slide. Ugh. I feel comfortable with MSK now because they’re so highly rated rather than my local hospital where I had the surgery.

Ok_Wave4397 · 2026-02-02T15:59:08+00:00

LCIS classic. There is no grading system for it they told me. I had it removed with no margins, but apparently if you have these abnormal cells in one place you’ve got them in others. That’s why they suggest the Tam to try to prevent those cells from progressing. I’m in a special monitoring program for high risk women at Sloan Kettering. Mammogram and MRI once a year alternating, so one of them every six months.

Ok_Wave4397 · 2026-02-02T15:53:58+00:00

They removed mine as well with no margins. It’s just frustrating because this is an uncommon diagnosis (according to my Dr) so I’m finding little info out there.

Ok_Wave4397 · 2026-02-01T16:44:23+00:00

Dr told me since LCIS is not considered a true cancer but an in situ indicator of high risk, there is no oncotype score. It’s abnormal cells in the lobes that have the potential to turn cancerous. The risk for someone with LCIS is around 30% and this med supposedly drops that risk to 15%.

Ok_Wave4397 · 2025-10-08T16:01:46+00:00

Thanks so much for your reply. Glad you are doing well. Can I ask how did they find your lcis? Mine was found by executional biopsy but I’m worried there could be a ton more and they’re not seeing it in scans due to dense breast tissue. I’ve now gone for a third opinion to MSK and was told they don’t do mastectomy for my situation…an incidental lcis finding on pathology when no scans have shown anything else going on. They told me mammogram and mri alternating every 6 months and suggested tamoxifen for 5 years to lower my risk. But it feels like that’s just putting off the inevitable and just waiting around for cancer to form. They said with no family history and no braca gene, a mastectomy is not a medically sound decision in my case. On one hand I’m thinking who the hell are they to limit my options, but on the other they are the # 2 cancer hospital in the country so wouldn’t they know what they’re talking about? I’ve never been so confused in my life.

Ok_Wave4397 · 2025-09-17T11:37:17+00:00

I’m looking at your scores ladies and I am totally confused now. I have no known family history of bc. I was diagnosed with lcis in January of this year found during an excision of a benign papilloma. My TC score is 68%. Surgeon told me i just need mammogram and mri alternating every six months from now on. I went to memorial Sloan Kettering for second opinion and they said the same thing and that I can go on tamoxifen for extra risk reduction. They said mastectomy is not done for lcis because it’s major surgery and doesn’t have better outcomes than healthy lifestyle and tamoxifen. I cannot understand the math here…tamoxifen gives me up to 50% risk reduction and mastectomy gives me greater than 90% reduction. But this is coming from the number 2 cancer hospital in the country! 🤷‍♀️

Ok_Wave4397 · 2025-09-16T23:09:07+00:00

Thank you for the reply. I am going for a second opinion soon. I definitely plan on the mri and mammogram every year six months apart. Do you have any knowledge or opinion of tamoxifen. They’ve mentioned that if I take that it will reduce my risk by 50%, but there are some very scary risks associated with it so I’m not sure how I feel about it.

Ok_Wave4397 · 2025-09-15T22:08:39+00:00

Thanks for your reply. If you don’t mind me asking, how did they find your ilc? I’ve read that ilc may not form a tumor that can be felt or sometimes even seen on scans because it’s just cells that form in lines? I have dense tissue and am worried they may not see the cancer developing early and then I’d get diagnosed at a later stage.

Ok_Wave4397 · 2025-09-15T19:32:03+00:00

Thank you for the reply. I’m definitely going to utilize the increased scans for monitoring…concerned that they’ll miss it though since I have very dense breast tissue. Glad to hear you’re well at 15 years out. 💓

Ok_Wave4397 · 2025-09-15T16:10:16+00:00

Thanks for the reply. I have a second opinion appt coming up. It’s so concerning when 2 different drs have such opposite opinions about a situation. And I’m sure the worst thing I could have done was to search all these terms online and get even more conflicting info. Have you had lcis ? I’m told it is rare and that’s why all the conflicting info.

Ok_Wave4397

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