Early stage breast cancer, status post mastectomy

gotfaith

I was 47 years old and diagnosed with invasive bc in June 2015 and underwent double mastectomy in August. Luckily, as I'm told so often, my tumor was only 1.5cm (left) and I had associated DCIS on the left and both DCIS and LCIS on the right. Node negative, ER/PR+, HER-2. Low category oncotype dx. When I went to my MO for my oncotype score in September, he told me I was in the low category and didn't need chemo. Great. He then told me tamoxifen wasn't really going to provide any major benefit to me, either. I was thrilled, to say the least, as I didn't really want to take that stuff. Who does, right? He told me I didn't need to worry about anything, go live a long and healthy life and no need to ever seen him again. My husband was there to witness this conversation. I practically skipped out of his office and other than going through the reconstruction surgeries, I've pretty much been living as if 2015 never really happened. Once all the surgeries were done and I was healed I finally returned to my original surgeon b/c I was wondering what type of follow up was necessary, if any. My surgeon was shocked I wasn't on tamoxifen and I told her about my conversation with the MO last year. She disagreed and recommended I "research" more and consider a 2nd opinion. So, I returned to my Dr. Susan Love book, returned to some of the websites my surgeon recommended and agree, perhaps I should get another opinion. Granted, it has now been 13 months since my surgery. Out of curiosity, I obtained my MO's consultation report from that visit so I could provide it to my 2nd opinion. Lo and behold, the MO dictated that he recommended tamoxifen and I was to follow up in six months. That was news to me - and my husband! I thought I was golden, especially since everyone I meet tells me how happy they are that I'm 100% cured, right? Right...

So, then I found this forum and have avidly been reading the posts and have learned quite a bit and am grateful for the many resources that have been recommended. I find myself vacillating between "oh crap, did I miss the boat on appropriate treatment?" to reviewing some of those resources and figuring "no, i'm good!" That cancermath.net cite pretty much tells me I don't have to EVER have to worry about recurrence, even without tamoxifen. Then I look at the MBCN website and Dr. Love's Huffington Post article and I wonder...I find this very perplexing, to say the least. Any thoughts, advice, etc is much appreciated. I need to get my head screwed back on straight! Was/am I a moron, in denial or just misinformed?

Side note, I do have a 2nd MO opinion scheduled in late November.

KathyL624

What was your oncotype score? Mine was 9 and my tumor was 8mm and I am taking tamoxifen and being seen every 3 months, which I believe is standard

gotfaith

My oncotype score was 8.

pupmom

There are women with DCIS only who are on Tamoxifen. So, yeah, I find the fact that it wasn't prescribed to you odd.

Moderators

Hi gotfaith,

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KBeee

I think a second opinion is warranted. It is not too late to start on it. A new MO who communicates clearly and who dictates accurately would perhaps be a better fit. I am not seeing my original MO, and the one I have now is a much, much better fit for me. I am glad you took the time now to research further. Best wishes.

bluepearl

Unless there is a medical history of strokes, a second opinion is going to tell you to take the anti-hormonal. The oncotpeDX will tell you your recurrence rate with and without anti-hormones. Also, you are in your 40's, so even more important. A 1.5 cm can still shed tumour cells even if you are node negative and tamoxifen will starve any rogue cells and help prevent proliferative behaviour. I would get a prescription.