MO says Oncotype test underestimates recurrence risk....

Hi Danne,

Yes, that happened to me although under slightly different circumstances and kicked me into doing chemo of which I'm now through 2 of 4 rounds so even though was initially very disappointed about that am now feeling like I'm making progress and so far hasn't been nearly as bad as one might think.

In my case I was on a 2 week clinical trial prior to surgery of a drug that MO feels could definitely have influenced the tumor proliferation factors that factor into the Oncotype. That said, a 2nd opinion felt that was just speculation and suggested a middle step could be to get the Mammaprint which would place me at either low or high risk instead of just over the line into intermediate as my Oncotype came back. The 2nd opinion also felt that even without Mammaprint I could reasonably make the decision to forgo chemo. However, insurance might not have covered the second test and more importantly for me one could speculate that there could have been the same underestimate issue.

In the end, while I am strongly Er+, my PR was + but low, but HER2- and all of that combined with my relatively young age (39) had my MO say that her projection for me was more like like 13% or so recurrence risk with just surgery and endocrine therapy and she said her perspective was that this was not a “good enough" outcome if the option of chemo + endocrine therapy could theoretically bump me well into less risk - in my case she suggested 5-7%. She felt this was more important given the number of decades ahead of me. That said it is of course a very personal decision and I don't know yet what being on long term endocrine therapy will be like. Stats have benefits but also don't account for everything. After all I fell into the much less likely I'm getting breast cancer at all in the first place at my age and am trying to do everything in my power to put me on the other side of those odds going forward.

Have you input your stats? In my case these were helpful to me in that the were very much in line with what my MO felt my recurrence risks are.

https://breast.predict.nhs.uk/

I think that was covered in the other thread as to discussion of the same Oncotype score being significantly different if you are,say, 30 versus 70 at age of diagnosis. If you are old the score might overestimate, thus the other optional calculation, If you are young that is why the score could lead an oncologist to still recommend chemo if you are very young even if the score would normally indicate “no chemo.”

Oncotype doesn't take into account tumor size and grade.

https://www.ascopost.com/issues/august-25-2019/tum...

Bcat, I highly recommend getting a second opinion.

BCat, glad to hear that you will be getting a second opinion. I found my oncologist through getting a second opinion--the first oncologist was very highly rated but I wasn't really at ease with her. Loved my oncologist and still see him once a year. Keep us posted.

Update, had consult with second MO. She thinks my Oncotype score of 20 w/ a 6% distant recurrence risk w/ AI or TAM translates to a ~12% risk with no treatment. She says the drugs have a ~50% benefit so she is doubling it, but I do think it's a little inflated since she seems to be using the percent benefit of any recurrence rather than just distant recurrence. If you take that the AI/TAM gives a ~35% reduction in distant recurrence risk, I would have a ~9% risk w/ no treatment.

I asked about the RS-pathology-clinical (RSPC) tool from Genomic Health that would factor my small tumor size etc into the risk score. She said she did not have the tool handy, but that it would most likely bring my score down due to the favorable clinical features. She said it would make me feel better but that she didn't want to use it to discourage me from getting treatment. I thought that was a refreshingly candid statement.

She thinks that w/ my 20 oncotype score and younger age, it would "not be wrong" for me to have chemo, but that it would probably only give me a 1-3% benefit.

So my options are:

1) Have no further treatment, accept my 9-12% distant recurrence risk and move on with my life;

2) Do just chemo and get a 1-3% percent risk reduction (however I think the incremental benefit is calculated as if I were also doing ET, as it was in the TAILORx study, if not doing ET, the benefit by itself may be a bit higher);

3) Do just hormone therapy and get a ~3% risk reduction (~6% according to this MO; I think that is inflated);

4) Do both hormone therapy and chemo, however MO could not say that the risk reduction would be cumulative as opposed to having partially overlapping effects.

I will not do #4. I am either picking one treatment or doing no further treatment and moving on. Benefit of chemo--would be a 3 month treatment, then I could move on. Downside--highly toxic. Benefit of ET--somewhat less toxic than chemo. Downside of ET--would be for 5-10 years, with no guarantee that I would be able to tolerate any of the drugs for any length of time.

If I do chemo the window to do it is within 3 months of surgery. So I have the month of June to decide while undergoing rads.

Hi Danee, the 2nd opinion was from an MO at Weill Cornell, she has her undergrad from Harvard, MD from Duke and MPH from Harvard. My original MO happened to practice at MSK before coming to my current breast center.

I feel like the incremental benefit of chemo if I decide to do ET anywayis too small for the toxicity. The treatment also has a .5% risk of causing leukemia.

She basically said chemo was up to me and would recommend ten years of lupron plus AI or tamoxifen (or I would do a different SERM Toremifene since I take Wellbutrin). I have heard that about ILC too, but I also heard Megan Cruz at the Cleveland Clinic speak at a recorded event, she is known for treating lobular. She said the idea that chemo doesn't work in ILC is probably an overgeneralization. Also the conventional wisdom is that ILC is highly hormone positive yet the largest cross section of my tumor left at my hospital lab was only 50% ER+ and the sample that was sent to Oncotype is potentially even lower. So I'm not sure how much to buy into the conventional wisdom. I just don't know if I can ever get there to allow them to inject me to shut down my ovaries.

I am also thinking about having a sample sent out to Mammaprint. That Nature article talking about the LobSig test for ILC mentioned that mammaprint has been validated for node negative ILC.

Lilly, I had one node removed, and it was negative, so they didn't take any others. I had a mammogram, ultrasound and MRI prior to surgery so I'm fairly comfortable they had the full picture. That is def sneaky to get into your nodes but have such a small tumor! But one thing I learned since getting cancer, is that being node-negative doesn't count for as much as you'd like because there could still be undetected tumor cells floating around.

Lilly,

What was in this extra node? Isolated tumor cells or something bigger?

I had one sentinel node removed with rare ITC. But my surgeon told they never know how those cells appeared in lymph nodes - travel on their own (which is not good) or because of biopsy and surgery, i.e. "passive transportation" (this is better). I had BMX+radiation. Now on Lupron+Arimidex.