Chemo or no with node pos lobular

KMom57 · May 2020

Trying to prepare for upcoming discussion with MO on my surgical pathology. MO says we are going to need to talk about chemo because there was more cancer there than we thought. Actually, the tumor was smaller than on imaging and the other satellite ones appeared to be gone, but there were 8/11 nodes pos. LVI extranodal. The oncotype sent out on the original biopsy was 13. The mammaprint was low risk. I know neither of those work with that many positive nodes, but it seems there must be some part of the biology that led to the very low benefit of chemo noted. And that biology hasn’t changed just because more nodes. Right? Is this a case of “yes your prognosis is lousy, but chemo won’t change it?” I’m willing to do whatever I have to however difficult, but if it’s really not going to do any good, I don’t want to ruin my health further and lose the quality of whatever life I have left with my child. I guess what I’m saying is, is thisa case of “this is bad so we have to do something, even if there’s not much chance it will work?” My stats are lobular, luminal a, Er+ 99%, pr+99%, Her2 low, 2.4 cm tumor, 8/11 nodes, with lvi and extranodal. I did 6 mos letrozole which appears to have shrunk the tumor but didn’t clear the nodes. Any insights? Research or things I should think about?

ShetlandPony · June 2020

Hi, KMom. I will share some thoughts that you may wish to discuss with your oncologist. These are the musings of an educated and well-read ILC patient, but one who has no medical degree.

Your Oncotype test was done on the original biopsy of the tumor. You said, “And that biology hasn't changed just because more nodes. Right?“ You also said, “ I did 6 mos letrozole which appears to have shrunk the tumor but didn't clear the nodes.“ My thought about this is that maybe the cancer that was/is in the nodes has a somewhat different biology from the biopsy sample. That it developed mutations that made this sort of subset one with more of a tendency to spread and more of a tendency to resist letrozole. In other words, if they were to analyze the original tumor biopsy vs. the cancer in the nodes, it would be different, with the node cancer having a more aggressive profile that could have sent cells to distant sites. And so maybe chemo should be considered.

The other thing is that I am starting to think that because Oncotype was validated with mostly IDC (and postmenopausal women), and because the studies of LobSig showing that Oncotype and PAM50 (Mammaprint) may not be the best tests for ILC, the clinical characteristics of the cancer should be given more weight when it is ILC. So, with all those nodes, lvi, and tumor size, once again, chemo should be considered even though the Oncotype score is low. Even more so if you are premenopausal.

Here is a link to a paper about LobSig. This test is not available for use yet.

https://www.nature.com/articles/s41523-019-0113-y

(By the way, in case you are wondering, I was premenopausal and my Oncotype was 16.)

KMom57 · June 2020

Thank you Shetland Pony. Yes one of the things the MO has told me is that he’s testing the cancer in the nodes to see if it’s the same as the tumor itself. Now I understand why. Thank you.

ShetlandPony · June 2020

Oh that’s great. Your oncologist is on the ball. Excellent.

KMom57 · June 2020

Yes. I feel confident with him. He also tells me it's easier to see treatment effect of endocrine therapy in the nodes, if there was any effect, than it is in the tumor itself. So he will be sitting down with the pathologist to look specifically for that, as well as retesting ki67 to see if it is still low and some other tests. They re-biopsied after one month on the AIand the ki67 dropped below 1, with only isolated tumor cells. But The thing that worries me now is, what if they made a mistake on the re-biopsy. What if they missed the tumor and that's why the ki67 dropped below 1, and only isolated tumor cells were found. What if it never WAS working and we just thought it was. It's going to be a very long two weeks until I get answers.

KMom57 · June 2020

Updating for future readers in this situation....cancer in the nodes was the same as that in the tumor. Highly ER+ and genomically tested low risk. Ki-67 was higher in tumor than the rebiopsy but still below 10. So the endocrine was not a failure. Four rounds of TC was recommended. It was explained that yes, the science is the same (indicating that for my cancer there would be lack of significant response to chemo in the tumor), but with more positive nodes, data indicates increased chances that there could be cancer cells floating around that might have acquired mutations making them more endocrine resistant, but potentially more chemo responsive. My Chek2 also Increases likelihood of chemo response. So as I understand it, we hit it with both barrels so to speak. Letrozole for the ER+ and chemo for anything that might be endocrine resistant but potentially chemo responsive.TC was recommended as there isn't sufficient benefit in my cancer to warrant adding Adriamycin....not enough to offset risk. So I'm going with that recommendation.

MoonGirlJess · June 2020

I had an oncotype of 10. (Pleiomorphic lobular) I had the AC chemo along with the 12 weeks of Taxol. It kicked my ass but I never regretted it. My rad onc said that all oncotypes are low on lobular patients, for what’s it worth.

KMom57 · June 2020

Yeah, I'm not sure how they make the determination between AC-T and TC. It's a puzzle to me even after doing tons of research on my own. I suspect in my case it's less that I don't NEED the A, as it is that it won't work all that well so there's no point in adding the risk. Am wondering if the Chek comes into that —read something about that but don't recall the details. I had three opinions. Two said TC. Sometimes —ok, often— this whole thing feels like I'm shooting in the dark, just hoping I'm making a wise choice.

karen1956 · June 2020

I was Dx in 2006 - positive nodes - chemo was part of my Tx plan.

BCSucks1 · October 2020

my oncologist says Oncotype is not very helpful when it comes to ILC.. I did chemo because my tumors were more aggressive than what they usually see with ILC and I had lymph nodes too.. good luck with it..I certainly didn't enjoy chemo but it wasn't actually as bad as I feared it would be.

Chemo or no with node pos lobular

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