Second opinion recommends OS + AI. Dont know what to do

Hi Heather-

I am on OS plus Tamoxifen. What reason did your main doc (MO?) give for not agreeing with the other doc?

Luckily I was able to get my second opinion at Dana Farber, so my MO was willing to defer to them. She has even reached out to them when I was having trouble with Lupron and we were figuring out next steps.

You could switch docs if you don’t get satisfactory answers . I have read here that AIs are more effective against ILC.

Hmmm, maybe he could show you the study? My Oncotype was also 14. It seems when you don’t fit into their normal range, they don’t know what to do. I was young, large tumor, positive node, etc, and my docs actually pushed me to get a second opinion because they were all in disagreement.

Could you switch to the second opinion doc if you want? I’d rather have someone willing to work with me than someone who’s going to dictate my treatment.

Hi jrnj- It was explained to me that there is a risk for incomplete OS. It has happened to someone on these boards, so not just hypothetical. AIs can’t handle that much estrogen, and in fact will increase your risk if you’re not surpressed. ( I don’t know how ) The fact that I see all these premenopausal women on OS + AI whose MOs are Not checking their estrogen levels makes me cringe. If docs are monitoring regularly, then it makes sense.

Anyhow, this was the recommendation from a doc who specializes in BC in young women at Dana Farber, so my MO was willing to follow the treatment plan. It seems like a middle of the road option.

This post will be brief and without the links I would normally find for you because I am tired and getting ready for a “procedure" tomorrow.

Anyway, the Oncotype RSPC (recurrence score pathology clinical) is an online tool your onc can use to personalize your Oncotype score by taking into account your age, tumor size, proposed treatment etc. If the revised score is higher, there is a vote for being more aggressive by using OS + AI.

However, what concerns me is that there is evidence that some ILCs are resistant to Tamoxifen, and that the difference in outcomes with tamoxifen vs. aromatase inhibitors is much greater with ILC as opposed to IDC. One paper to look at is from the BIG-98 study. There is a clinical trial currently recruiting that compares tamoxifen, aromatase inhibitors, and faslodex for early stage ILC. They are conducting this trial because they have enough evidence that ILC may respond differently than IDC to standard endocrine treatment. Also there are questions about how reliable Oncotype is for premenopausal ILC when it was validated with mostly postmenopausal IDC patients. See the threads here on the LobSig test, not yet available. By the way, in premenopausal women tamoxifen can raise your estrogen (get it tested), and that can't be good.

Bottom line, I would choose the OS + aromatase inhibitor.

ShetlandPony (Oncotype 16, diagnosed premenopausal)