Stage 1 Grade 2 Chemo or not

My "stats" are virtually the same as yours but my Onco score was 19. I have a strong family history, negative BRCA but my MO still said it's not high enough to warrant chemo. Maybe get a 2nd opinion?

You should be asking the more radical MO (who uses >10 as the ODX cutoff for chemo, not supported by any research thus far and a serious misinterpretation of the TailoRx study, which narrowly involved older women, released only interim results and which is still studying the 11-17 cohort) whether she is recommending chemo in your case because of your youth and borderline-high Ki-67 (a reasonable caution, as bc is more aggressive in younger women and your Ki-67 indicates your tumor cells were proliferating faster than either your Nottingham score or ODX score would suggest); or if she routinely prescribes chemo for any ODX scores >10, regardless of pathology or patient age. If the latter, I’d go with that second opinion--it suggests the first MO is not in line with current contemporary standard of care.

Two caveats--first, because you opted for BMX rather than LX and had no radiation therapy, it is possible that tumor cells might have been left behind, hiding out in the skin, axillary tail or chest wall (unlike the radical and modified radical MXs of yore, which removed all the axillary nodes and the muscles down to the sternum) that your MO wants to mop up systemically. And age might still be the deciding factor even if all other things are equal, for a very simple reason: you have a potentially much longer life ahead of you and thus more at stake than we oldsters. For us, a 20-yr interval before recurrence would be near the end of our statistically expected lifespans; for you, that would come in mid-life. You might ask for the MammaPrint test, which is usually used to narrow down risks vs. benefits of chemo for women in the intermediate (18-30) ODX group. (At 17 but with a high Ki-67, you might qualify).

Ask that first MO how PR+ you are--some are now rethinking the conventional wisdom that anything over 5% counts as “positive” for PR. There’s new research that progesterone and its receptors have a very significant effect on how ER+ tumors access estrogen--inhibiting estrogen’s effects on those tumors and thus increasing the health benefits. A PR % that is very low might make an ER+ cancer more aggressive than one that is highly (>50%) PR+. An oncotype 17 ER/PR+ cancer has relatively few cells that divide fast enough to be vulnerable to chemo drugs. (Again, age is a factor--we seniors might die of old age before those few aggressive cells get a chance to spread, but you might be in the prime of life). Ask if she has taken into account any medical or occupational conditions you have that might make chemo more harmful than beneficial. Ask her to show you the GenomicHealth graphs and charts in your ODX report that compare your 5 and 10 year mets-free-survival rates with endocrine therapy (which you will definitely get) alone and with endocrine therapy + chemo. The charts use tamoxifen as the endocrine therapy, which you would have since you are pre-menopausal. In my case (ODX 16) the benefit of adding chemo was less than 2% with tamoxifen; but since I am postmenopausal I am on an aromatase inhibitor instead--which improves my odds by another 1-2% over tamoxifen. At my age, that adds only a few months to a year to my theoretical lifespan...which is as likely to be cut short by something cardiovascular or pulmonary as it is by breast cancer mets.

IMHO, any oncologist who says “I always prescribe chemo for any score above (number 10-18)” or “I never prescribe chemo for anything under (insert number)” ought not be trusted without a second or third opinion.

For some doctors, your age (36) suggests that a more aggressive approach is warranted. I was diagnosed at 46, and somehow, my oncologist thinks that she's responsible for me making it to 80! OK....

As someone who found chemo tolerable, I will say that doing chemo at 46 was probably easier than doing chemo when I will be 66. At 46 -- other than cancer -- I was very healthy. I was in shape. I had a strong motivation for finishing chemo (two children with autism who will need guidance into adulthood). I had a job where my boss allowed me to work at home and cut back on some responsibilities.

However, I am/was triple positive (ER+PR+HER2+), Grade 3, and Stage IIIA. Chemo was a no-brainer. I spent exactly five minutes thinking about it before assenting to "the plan."

You have a choice; ChiSandy has provided you with a lot to think about. Good luck!

(Edited to add: I'm wrong on my presumption... the Oncotype doesn't evaluate age) The question is. doesn't the oncotype take age into consideration when it creates a score? Therefore having the exact same tumor, a woman at 30 would have an oncotype of 24 that a woman of 60 would be 18 - so it fixes the issue of older women outnumbering younger women... At least that's what I believe happens.

lisey - I don't believe that Oncotype Dx uses a patient's age in the formulation of the recurrence score. Since the test is based on genetics of the tumor and hormonal receptor info it should be independent of patient age. Age is a clinicopathologic factor and should be used by the medical oncologist in conjunction with the RS score and other individualized patient factors, but I can find no info supporting adjustment of RS scores based on patient age.

I also am unaware of any published information that indicates that age is used by the mathematical algorithm to calculate the Recurrence Score. To my knowledge, the Oncotype Recurrence Score is computed by an algorithm, and the inputs are the expression levels (i.e., mRNA levels as determined by quantitative reverse transcription-polymerase chain reaction (qRT-PCR)) from 16 cancer-related genes and 5 control genes:

"Relative expression levels of the 16 genes are measured in relationship to average expression levels of five reference genes. While a majority of the genes comprising these 16 genes are estrogen receptor (ESR1, PGR, BCL2, SCUBE2) and proliferation (Ki67, STK15, Survivin, CCNB1, MYBL2) related, there are other genes (HER-2, GRB7, MMP11, CTSL2, GSTM1, CD68, BACG1). The unscaled recurrence score (RSu) was calculated with the use of coefficients that are defined on the basis of a regression analysis of gene expression. The RS was rescaled from the RSu as follows: RS = 0 if RSu <0, RS = 20 × (RSu − 6.7) if 0 ≤ RSu ≤ 100, and RS = 100 if RSu >100."

I see no request for age at diagnosis in the paper requisition form provided on-line for the Oncotype test for invasive disease, suggesting that Genomic Health does not use age to calculate Recurrence Score:

http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/Ordering/InstructionsGuidelines.aspx

Regarding, TAILORx, please keep in mind that only results from the cohort with Recurrence Scores of 0 to 10 have been published. Thus, the TAILORx study results available as of this date, do not appear to speak to the situation of a young woman with a Recurrence Score of 17.

Other validation studies have assessed age as a factor in patients with other scores using multivariate statistical analyses. But there might be limitations based on study design and how well-represented much younger patients were in the studies. It would be best to consult an expert professional Medical Oncologist on the question of what additional clinical (e.g., age) or pathologic features should be considered in any particular case.

Lisey:

The Genomic Health site expressly indicates that at least for those with an intermediate score (18 to 30), "Patient age" is one of several additional factors that should be considered along with the intermediate Recurrence Score result:

http://intermediate.oncotypedx.com/en-US/Using-The-Intermediate-Recurrence-Score/Integrating-The-Intermediate-Recurrence-Score.aspx

Sikb:

A third opinion may be helpful to you, perhaps from an NCI-designated cancer center:

http://www.cancer.gov/research/nci-role/cancer-centers/find

BarredOwl

lisey - I don't think the age thing is that simple, and I am not saying the following in any kind of competitive way - just as an illustration of age related risk. I am almost 20 years older than you are but had a very aggressive, Her2+ and node positive cancer hiding in very dense breasts, that even though palpable was not seen on mammogram. I was nine years past surgical menopause when diagnosed, had a highly ER+, low PR+ tumor, with a Ki67% of 43. Mammaprint showed high recurrence risk, and my recent BCI test (predictive and prognostic for recurrence risk after five years of anti-hormonal therapy) shows high recurrence risk and low benefit from anti-hormonal drugs - I fall into 10% of patients with that result. That test is done on the original tumor so there is question as to whether I have received any benefit from the five years I have been on anti-hormonals. While younger age may mean a more aggressive cancer, or a longer time period for recurrence assuming a normal life span, age alone does not translate to automatically higher risk. This is what I mean by clinicopathological factors - your RS score AND your age, and all the other aspects of your diagnosis as an aggregate should be factors in making treatment decisions and determining your future risk. One of the reasons you have pursued the variety of testing modalities you have is to determine your risk as an individual, so try not to focus too much on generalities that may not apply. I don't want you to worry unnecessarily although I know that is easier said than done.

Hi starwoman:

The Genomic Health site does provide additional tools on-line for physicians only, with certain caveats (see "Oncotype DX Tools User Guide" available at the link):

http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/Resources/ODX-Tools-RSPC.aspx

The RSPC tool was discussed in a recent article:

http://jnci.oxfordjournals.org/content/108/11/djw149.full

"Recently, GHI began providing an online Recurrence Score Pathology-Clinical (RSPC) calculator for use in node-negative patients that combines RS with clinicopathological variables including age, tumor size, grade, and planned adjuvant hormonal therapy. Tang et al. reported a greater separation of low- and high-risk patients and reduced number of patients in the intermediate-risk group when classified by RSPC (17). Nevertheless, GHI recommends that RSPC should only be used as an "educational tool" together with RS result to enhance the understanding of the score in the assessment of DR risk (18). It should be noted that while integration of clinicopathological factors with molecular features greatly enhances the prognostic power of risk assessments, this has not been shown to increase predictive information regarding chemotherapy benefit (17)."

The scope and quality of validation (which speaks to reliability) of any such supplemental on-line tools would be a point of discussion with an expert.

BarredOwl

You know, I tried to find a way to input my age and numbers into the calculator, and it looks like it's subscription based ONLY for docs. To me, that is really wrong. I want to plug in various information and see where it falls so I understand the algorithm better. Kind of like a mortgage calculator WITH all the different amortization schedules one could do. I enjoy tinkering with the numbers and seeing the results - it gives me a bigger picture of HOW much age would factor in, etc. Why would they not allow patients to have access to this? I'm fine paying a subscription. Honestly, except for the nurse, All my doctors have been silent with me since June. I feel I"m on my own here, and while I may need some hand holding - due to me reading too much, You guys have been so much better than anything I've gotten from the medical establishment.

Thanks SpecialK, I'll check them out. I've asked my Dr. to respond to me with some questions. We'll see if I even hear back. Everyone on here talks about having a 'team'.. I don't have anyone. I haven't seen a PCP in years - as I'm healthy, and the Breast Care Coordinator told me that now that my BMX is over, her role is done. I don't have RO (since I didn't need rads) so I'm not sure how to even make a team that cares about my case.

Lisey...you should have a MO following you since you are taking Tamoxifen. I would also want to be followed by the BS to check for possible local recurrence. Although the chances are small someone should be doing a breast and axillary exam. Hope that helps!

Lisey:

I am kind of paranoid, but I'd call Agendia directly to confirm that they have the received your samples (and when), and ask if they can provide you with any information about when your results will be available. You may need an appointment with your MO to discuss the test results in the short-term and to select and initiate the kind of endocrine therapy.

http://www.agendia.com

BarredOwl

I just got the mammoprint results over the phone. I am Luminal A. I am so shocked and crying with relief. It's a huge weight off my shoulders.