What would you do?

Well, since you are ER+, you can always remove your ovaries, which produce estrogen and lower those recurrence numbers a little more. I am 8 years out. Been on tamoxifen, then AI, now back to tamoxifen and i plan to be on hormonal for 10 years. I want to do all I can to prevent recurrence. I too had ILC and we all have to be comfortable with our decisions. We also do not want to regret our decisions either. I personally would fight with all I have and thats hormonal. I respectfully would take the hormonal.

I had a BMX last May, 2017 and have been on Arimidex for a year. I was also told 7-10% possibility of return in 10 years. I have very mild side effects most of the time. But eve if they were worse, I would take the Arimidex anyway. My philosophy is whatever it takes. Each person is different and you might not have problems at all.

Deamo, SEs are a continuum. Some peope have a lot and some, like me, don't have any. I've been on letrozole for 2-1/2 years. No weight gain, hair looks good, no nausea. My joints sometimes hurt, but i had psoriatic arthritis looong before i ever heard of an AI, but it hasn't become worse. I don't think i would just refuse a well known preventative treatment out of hand without at least trying it.

>>The Mammaprint website says a low score means no chemo needed and/or hormonal therapy.<<

Where does it say that?

--------------------------------------------------------------------------------------------------------

5. WHAT WILL THE MAMMAPRINT TEST RESULTS SHOW?

MammaPrint is a 70-gene test that will assess your risk of cancer recurrence. in other words, how likely the cancer is to return. You are provided either a Low Risk or High Risk result, with no intermediate or inconclusive results (which can occur with other tests). In patients with the most common type of breast cancer (hormone receptor positive, HER2 negative, lymph node negative [ER-positive / HER2-negative / LN-negative]) a Low Risk MammaPrint result showed an excellent 97.8% chance of being metastasis free at 5 years with hormonal therapy alone (tamoxifen or aromatase inhibitor), with no significant benefit of adding chemotherapy. In patients with a High Risk MammaPrint and treated with hormonal therapy and chemotherapy, these women had a 94.6% chance of being metastasis free at 5 years. These results are based on the landmark MINDACT clinical trial and represent the average risk of recurrence for these two groups.¹

A Low Risk result does not guarantee that your cancer will not recur. A High Risk result doesn't guarantee that your cancer will recur. These results, in addition to all other clinical factors, will help you and your doctor make the most appropriate breast cancer treatment decisions.

6. WHAT IF I AM IN THE LOW RISK GROUP?

Based on data from the MINDACT Trial, if you are Low Risk by MammaPrint you are at low risk for cancer relapse and not likely to show a significant benefit from chemotherapy.

As a Low Risk patient, you have an average of 2.2% risk of distant recurrence at 5 years, on hormonal therapy alone (average risk of recurrence for ER-positive / HER2-negative / LN-negative patients).^{1
About MammaPrint} MammaPrint is a FDA-cleared, CE-marked in vitro diagnostic test, performed in a single laboratory, using the gene expression profile of breast cancer tissue samples to assess a patients' risk for distant metastasis. The MammaPrint result is indicated for use by physicians as a prognostic marker only, along with other clinical-pathological factors. MammaPrint is not intended for diagnosis, or to predict or detect response to therapy, or to help select the optimal therapy for patients. Results should be taken in the context of other relevant clinical-pathological factors and standard practice of medicine

^{http://www.agendia.com/patient/breast/faqs/}

Hi SpecialK.

I had good numbers all around after testing. Had lumpectomy no node involvement no chemo 16 rad treatments given femara then eximistane. The side effects were bad for me. Quality of life diminished. Two of my friends had small to no side effects. Started in 2012 and stopped in 2014. In February of this year I was diagnosed metastatic BC In my left sacrum lower back. Distant metastasis. Go figure. It is possible the inhibitors could have helped but not even the doctors know. Now I'm back on femara with kisqali to block cancer cell growth, zometa infusions once a month to clean up hypercalcimia and get the calcium back into my back and strengthen my back and pelvis. Like one of the ladies said, give it a try. No guarantees. No 100% cure rate. But it adds time until the new medicines hit the doctors office and you're there. At my stage it's not curable but manageable. I might get a couple of years and be in line for some of the new stuff. It literally changes everyday:-) the AIs work. I've gone from wheelchair to walking-slowly. Keep in mind statistics are just statistics. Mine was a 5% recurrence rate but now I'm 100%. You have nothing to lose and everything to gain. Be bold in your thinking and as lots of women say- put on your big girl panties and kick some *#€. Hugs and good vibes your way. Lots of us are walking ahead to clear that path of healing for you.

I would switch and probably complain to her supervisor, personnel director. NO patient needs a doctor with that kind of attitude (and what a thing to say....good grief!).

Deamo, the mammaprint test result are valid for those who DO TAKE anti-hormonal  meds.  If  the test is similar to the oncotype, nixing the AI would more or less double your risk of recurrence, so your chance of recurrence would be about 15-20%.   Recurrence is not nice.  AI's can be annoying, but most of us deal with them (or with tamoxifen, to which I switched after a couple of years).  Side effects do not appear right away, and may not appear at all.  A bonus Is that the anti-mets work of the AI continues quite a while after you stop the drug.  

I never had nausea.  Sometimes I lost weight, sometimes gained, neither, I think, related to the drug.  I did, much of the time, find more hair in the shower drain, but experienced only minimal thinning.  My joint issues began after about six months and were only mildly annoying for quite a while after that.  My onc had several strategies to manage these, but eventually I switched to tamoxifen and the annoyance faded away.

I do urge you to meet with another onc, and maybe also your primary care, to discuss your mammaprint, his or her experience with patients with your diagnosis, and the degree to which he or she believes the drug will benefit you.

By the way, I loathed my onc at first, but I had been warned that he would come across very authoritarian, but would mellow with time.  He did, and now I love him.  I suspect this happens a lot as part of their job is to make certain we understand the disease and its risks.

Oops.  I just re-read the meaning of low risk at mammoprint.com and it says 10% chance of recurrence in ten years, without any adjuvant treatment, including hormonal meds.  Sorry.  Don't know how I misread that, but I did.  

The website also says, on the oncologist tab, in carefully chosen wording,  "Hormonal therapy alone (e.g. Tamoxifen) may be sufficient to further reduce her risk if your patient is Low Risk by MammaPrint, when combined with traditional risk factors."   Hmmm.  It appears the apparent crisp, clear, yes-or-no result becomes a little fuzzy when applied to individual patients.  

Will you let us know your new onc's thinking on this?  And I very much hope your new doc will be absolutely wonderful

I agree a new doctor for sure, this path is hard enough without the support of a good health team. I think everybody has a different opinion on hormonal blockers and which one to use, age, menopause, pre menopause, post menopause, ugh. My was E 100% pro 40% in a 2cm mass that had infiltrated my left breast, did a Double mast, 5 months of chemo, 5 weeks of radiation and now have been on anastrozole for about 5 months and have had very minimal side effects. I do have OA in my knees but have not noticed a significant change. The first few weeks I did have trouble sleeping but now I sleep basically without a top on and one of those "cool" type pillows and have not had any trouble now. My thinking was anything that can help keep this from coming back is a step forward. I did have concerns about the joint pain, and my doctor was super nice, he was like what if you just try it for a month and see how you feel? So for me it has been good, so I will continue, hope that helps