Chemo or not Chemo? Intermediate Oncotype DX Dilemma

menelao

Hi to all the lucky ones with Stage IB and Oncotype DX at the beginning of intermediate

I had IDC, ER+++, PR+++, HER2-, 1 SN with micromethastasis, removed by lumpectomy with clear margin. Will do radiation, letrozole and denosumab at MSKCC in New York.

My Oncotype DX came out 18 and oncologist let me choose if to do CMF or not.

I have never got my real risk calculated by the company. The 11% recurrence risk the company gave my doctor is based on 5 year tamoxifen, but aromatase and denosumab will probably bring it down.

The TAILORx study demonstrated that pts with oncotype < 10and lymphnode No and taking tamoxifen only do not benefit from chemo (CMF), while those with >31 benefit.

The study part on the intermediate risk (11-22 or something like that) will have results in 2019.

My oncologist let me decide. Two experts in the field (I work with them but I am not an MD) said that they do not recommend chemo (whithout specifying which one) for oncotype DX 18 women.

I have do decide. I need a name of a good BC oncologist at NYU or Weill for the n opinion and some similar story not to feel alone and having regrets...

Fitbit

I was Stage 1B, did BMX/reconstruction & Oncotype was 15 (IDC, ER/PR+, HER2 -, BRCA neg) and I had 1 node with micromet. My onc recommended chemo and so did other cancer Dr's. Any time cancer is found in the lymph nodes, that finding alone usually sends a patient to chemo. If you have node micromets/mets, you have no way of knowing (if cells have already traveled to the lymph nodes -sentinel or otherwise) you don't know where else cells have traveled to and doing chemo will kill any stray cells that are floating around in your body. It only takes 1 cell left in your body for a recurrence and IDC is invasive - meaning cells spread. I did TC chemo, 4 treatments. CMF is a long haul - once a week for 6 months. TC is 4 treatments over 3 months. It's a hard decision and Dr's won't tell you what to choose. You have to choose the treatment that gives you peace of mind and best chance for no recurrence. Stats & %'s don't ensure peace of mind that much - nothing is black and white, which makes all of this very hard to navigate.

ChiSandy

TAILORx (at least its data released thus far) did not address those Stage IA Luminal A women who scored between 11-30. The only cohort for whom it released data was women scoring 10 or below--and it was established that chemo offers no benefit to women with recurrence scores that low. As to those women 11-17 (the rest of what Genomic Health classifies as “low-risk”), the study is ongoing--and quite frankly, there haven’t been enough recurrences among women who either had or didn’t have chemo to amass sufficient data or demonstrate any trend. As most women scoring 18-30 do opt for chemo, there aren’t enough women in that range who opted out of chemo to make a valid comparison....yet. Studies which reporters misstate as deeming scores of 11-17 as “intermediate” (German & IIRC, Dutch) did not include any women in that range who did not get chemo, so there’s no true “control” (prospective or retrospective) group. It is erroneous to classify a score of 11-17 as “intermediate.” unless data clearly shows that in that range, there is a definite difference between chemo vs. no chemo. What I’d also like to see, as time goes by, is the data for women who spurned chemo and chose an AI rather than tamoxifen for their endocrine therapy.

Just as some MOs recommend against chemo for all women scoring <18, there are others who routinely prescribe it for scores >12. I hate to be cynical, but the first group of MOs tends to be employed on salary by major teaching medical centers, whereas the latter group are fee-for-service-reimbursed MOs in private or small-group practices (and who must buy their chemo drugs to be resold at a higher price to patients). I don’t think it’s possible to discount profit motive in this situation, any more than you can discount it re surgeons who do only excisional biopsies (instead of referring patients to radiologists for core biopsies) or who push mx or bmx over lx (for which they might not have sufficient experience)--and if in partnership with plastic surgeons, also push for mx with reconstruction when lx +rads may be all that’s needed.

menelao

Thank you so much. Just for curiosity when did you do chemo? Having 1 node with micromets is still consider questionable, new studies are done now on oncotype and patients with 1 node with micromets. My surgeon told me that the significance of few cancer cells in one sentinel node is still evaluated.

menelao

This is the article related regarding lymphnodes micromets and risk of recurrence

Reference: Giuliano AE, Hawes D,
Ballman KV et al. Association of occult metastases in sentinel lymph nodes and
bone marrow with survival among women with early-stage invasive breast cancer. Journal
of the American Medical Association. 2011;306:385-393. 

ladsgma

I had IDC with lymph node removal and a lumpectomy and did not do chemo so those with lymph node involvement are given a choice at my hospital, and I chose no chemo. My oncotype is 12.

Maya15

Hi, I am not in your situation because chemo was mandatory for me, but am replying because you're also asking for a MO recommendation in NYC for your 2nd opinion. Mine is Dr Oratz at NYU, she's great, very experienced, widely published, very friendly and empathetic.

starwoman

My Oncotype score was 18 and two MOs recommended against chemotherapy although I was worried about my Ki67 score of 30% and being diagnosed as Luminal B. I was ER positive and PR 'strongly positive' and wonder if the PR had a beneficial impact on the Oncotype score. The second-opinion MO consulted some physician-only part of the Genomic website during the appointment and said the AI (rather than tamoxifen) plus my age (60 at the time) plus tumour size (1.9 cm) meant the recurrence score was probably more likely to be about 8% rather than 12%. Who knows really? Good luck with your decision-making.

JoniB

At Weill you should see Anne Moore - however, she does not take insurance. If you would go up to NY Presbyterian, I can provide recommendations there.

menelao

Thank you for the 2 doctors reccomandations, very useful.


Starwoman, thank you for mentioning the MO only part of the genomic health information. It allows doctors to calculate based on age, pathology and type of hormonal therapy.


I have heard that some MO require a mammaprint when debating if chemo should be used for a patient with intermediate score.


Have anybody been tested with a mammaprint

Reckless

JoniB - sorry for butting in - can you recommend MO at the Presbyterian for me please

sschreier

Fitbit: I loved reading when you wrote it only takes one cell to cause reocurrence. I have stage 1a and onco of 17. I am so stressed about thedecision because I was offered chemo if I wanted and I said yes. Tubular 2, nuclear grade 2, mitotic 1..8mm tumor

cookiegal

I chose not to have chemo at 22 with one positive node. This was in 2009. My onc wasn't thrilled at the time, but afterwards I had my PS and a number of others say I made the right call. I recently had a fellow really interested in how I made my choice which was unusual "all those years ago."

I fell like MSK is very on the ball with things. If they felt you NEEDED chemo they would not pussyfoot.

Still it is a BIG HARD choice,and it really makes you think. You need to accept you will be walking around with a higher chance of getting mets.

You are also at the bottom of intermediate. The benefit really kicks in between 20 and 21 I believe.

Good luck. More and more docs are advising against chemo in your situation, but there are always exceptions to everything.

Fitbit

Thanks for your note, sschreier - glad to help! I just saw your post now. Haven't been on much. Hope your chemo went well!

GraceAK

Hi

I had a similar profile with IB and 4 small micro mats in 1 sentinel lymph node. I had 3 sentinel nodes and 2 others taken out furtherup chain which turned out to be intertwined and negative During surgery frozen sample was negative and they found it after staining so they stopped taken more all lymph nodes taken out. I had mastonomy but no radiation. 6 rounds of tc And on tamoxifen. I have luminal b idc with agressive Dcis throughout Breast. Which should be gone but on edges on what was removed I had little breast tissue

I'm frightened because I heard chemo and endrocrine therapy actually do nothing and can make things worse for luminal b. Does anyone know where I might find resources on it ?

Also dealing with fear. I had horrible experiences ( including breast infection and pneumothorax from port ) I have a narcissistic husband so no support. Hard being own advocate. Overwhelmed with fear

Thanks for your help

Iceprincess

Oh help, I am spinning in circles like a  Whirling Dervish.  I have Stage IA, Grade I, 0/3 nodes, well differentiated, tumor less than 2 cm.  My breast surgeon gave me a great boost when she said this is but a bump in the road for me.  The radiation oncologist said I had an excellent prognosis.  I agreed to the Oncotype test and came back @ 24 which everyone was surprised.  I am being offered chemo.  Yes, I want a long life but at 68, I'll probably die of something else before the cancer recurs. I also have diabetes and all the complications.  I just don't know what to do.  The toxicity of the chemo-well I don't think it would be a good idea.  Can you please offer some opinions.  Oh, yes, my Ki was 30%.  Will be doing rad and hormone therapy.  I am ER and PR+, HERS2 -.Thanks all.

Moderators

Hi Iceprincess-

That's a tough decision! Definitely talk it over with your doctors, and get a second opinion if you want some more perspectives. For insight, you might want to read through some of the threads on the chemo forum: https://community.breastcancer.org/forum/69?page=1. This is an older thread, so you might not get much feedback here, but there is lots of information all over the boards.

Welcome to BCO!

The Mods

ml143333

My oncotype score was 23 and I opted for 8 infusions of CMF. My logic was that I wanted to throw everything I could at it to help lessen any chances I might have of recurrence. CMF is chemo, but it was totally doable. I worked through all treatments, taking treatment day and the next off.

keepthefaith

IP, with a lower Grade 1, the chemo may not be as effective as higher grade tumors. You could always ask for a mamma-print test. It scores either high or low...no intermediate. Best wishes.