MO says Oncotype test underestimates recurrence risk....

JRNJ

Thanks for the info Danee. I think they rely too much on Oncotype, especially for node positive. I had to get three opinions to get chemo with an Onco of 15. But the third opinion said yes, and it was Sloan. Even though I don't go there, I have a lot of faith in Sloan and their experience.

BC, I've heard chemo doesn't work as well for ILC, but it can still work. I've also heard Tamoxifen may not work as well for ILC. Sloan Dr. recommended I skip Tamoxifen and do ovarian suppression with AIs. Keep us updated on what Dana Farber says.

BCat40

Update again and also relevant to initial thread topic:

Third MO said flat out no chemo. He pointed out that most of the tumors in the TAILORx study (that Oncotype is based on) were larger than 1 cm and the subset of under 50 yr old women in the intermediate risk category that benefitted from chemo had higher clinical risk, i.e. larger tumors. He also said chemo only reduces recurrence for 5 years and that ILC has a much longer tail recurrence risk. I told him I did not want to do ovarian suppression and he said that given the small amount of invasive disease in my case he would not push it given lifestyle/QOL concerns. He did say OS/AI has a slightly better benefit than SERMs but that given the small amount of disease in my case the added benefit would be so small that it is not worth pushing. He said there are several SERMs I could try to see what I could tolerate, starting with Tamox, and that even if I could make it to 2 yrs with the meds there will still be an ongoing lasting benefit. I will say that after speaking with 3 MOs it was the MALE MO who was most understanding about me not wanting to shut down my ovaries. He also conceded that a sizable subset of women do have significant difficulties on these meds (SERMs or AIs), and that he is starting a trial next year on a new third class of meds. Thank God!

As for Oncotype understating recurrence risk, he didn't say my risk was understated for the 9 years projected by the Oncotype (6% w/ meds, ~9% without), but said that if you look at my projected out lifetime risk it would probably be 10-15%. I think that makes sense.

MikaMika

BCat40,

Thank you so much for keeping us updated! Congrats on the great news!

I am excited about the third class of drugs! Do you know what are those drugs?

BCat40

You know, I wanted to ask about the drugs but didn't know if it was secret/proprietary since the trials hadn't started yet! It's going to be funded by a drug company so I guess one of the drug companies has something new in development. So exciting because there hasn't been anything new for early stage cancer recurrence prevention in a while. I kept lamenting how it seems like all they do is new studies with different combinations of the same drugs they already have. He said I should check in with him next year to see if I might qualify for/be interested in the trial.

MikaMika

BCat40,

Thank you so much!

Salamandra

It sounds like you found a great doctor! I'm so impressed by him even bringing up the option of other SERMs, I feel like many oncologists treat it like dangerous information. How is it going to work with follow up? Can you keep seeing him, or do you need to see someone local?

I generally have a (strong) preference for female doctors. I think an average female doctor will generally be much more bearable and competent than an average male doctor. But that isn't relevant when it comes to great doctors, and there are at least some great male doctors.

Also you've been on quite the roller coaster of a ride for treatment recommendations. All respect to you for sticking through it and asking questions and finding a doctor whose opinion you have confidence in, and what a nice thing it is that you are able to forgo chemo and ovarian suppression.

I too am intrigued by his research in a new class of drugs. If you google his name and research, you might be able to find what projects he's involved in. I think there's a registry of all research projects : https://clinicaltrials.gov/ct2/home

BCat40

Thanks Salamandra. I need to find someone to follow me locally but he did say he'd be happy to see me for follow up as needed. I'm going to talk to my BS who I like a lot to see if she can recommend another MO where I'm currently being treated. I checked on the trials and the only one currently coming up is something he's doing on Ibrance and ILC. I think it is probably not recruiting yet because he told me to check back next year. If I do a follow up I'll see what sort of info I can get.