Ultra low Mammaprint Score - Aromatase Inhibitors
I’m bringing a more specific detail to the Aromatase Inhibitors discussions. Is there anyone here who has an Ultra Low Risk Mammoprint score who chose to forego endocrine therapy completely? I’ve reviewed the MINDACT and FLEX studies and I’m having a hard time convincing myself that taking an AI (specifically Letrozole) isn’t over treatment. Per the MINDACT study and my specific results, the difference in distant metastasis is negligible whether I take it or not. One oncologist is comfortable with my decision to forego and my second opinion wants me to give a try and see how I do. I’m 56, post menopausal and already deal with most of the issues listed as fairly common side effects. Invasive lobular Cancer Stage 1 HR+/HER2- with no node involvement. Anyone out there? It’s so hard to find anyone because standard of care is to take them for 5 years regardless and then decide whether longer is appropriate.
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It makes sense for you to weigh this decision. I've been on letrozole for almost four years with no side effects. Of possible interest to you, my oncologist said this might be because I've been dealing with chronic pain for decades and have good PT, exercise, and medication in place. You can of course just try letrozole and see. But if the oncologist says fine to skip that obviously would be an ok choice as well. Hope you get some specific info here.
I had 1.2cm had lumpectomy radiation Ki67 a (10) N nodes Oncoscore (3) Prog&Estro positive- I am 71 going by my genomic results I chose to forgo
any meds.
I am very similar to you. Age 60 , I also had an ultra low mammaprint . Several small
masses of ILC in one breast . I had a unilateral mastectomy to avoid radiation. No chemo recommended. I had no Lymph node involvement. The oncologist recommended anastrozole and I have taken it for three weeks now and I’m already having the side effects! looking at the numbers, it just doesn’t make sense in my mind to continue in fact I’m wondering why they recommended it in the first place for such a low percentage change.
I took Arimidex for 2 months and had such bad side effects that my oncologist said to stop. 3% recurrence with it, 5% without. I had bad hair shedding, aches, pains, mood swings, could manage going to the grocery store but no strength left to put items away when back home. Terrible fatigue. Age 74. I had bilateral mastectomy and was HER 2 negative, stage 1 invasive ductal. There might be something else approved soon but it might have the same bad side effects, so we will see if I think it's worth trying. I tend to say no. Just now recovering from knee replacement surgery, 5 weeks post op, not really seeing myself adding to this current physical lack of strength.
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3 Reactions@marygrannie my diagnosis of IDC at age 74, was similar to yours. My Onco score what’s 13 with no chemo. I had a lumpectomy with one lymph node biopsy. and 15 radiation sessions. I was given a choice of three estrogen blockers I chose Letrozole and have been on it for exactly one year now. I have had hair breakage, which did not start until just after my radiation, which may have been due to the Letrozole, but most likely I think stress and some natural occurrence due to aging.
I have had some unusual side effects of an on during the past year, yes, tiredness was much more apparent during the first three or four months after my treatments completed, but that has continued to improve. six months after my last radiation treatment, I too had a TKR. That was this past April. It has taken longer to heal than I had expected. A lot of trouble sleeping again. due to pain trying to get comfortable at night with the knee issues. It was 11 weeks before I slept through one night. Right, right. It’s hard. to say whether the letrozole and its effects have hindered a speedier knee recovery, just too many unknown factors at play here. Maybe I should have waited an extra two months rather than just six after my treatment before having knee surgery.
Now after 12 months, on Letrozole, my fatigue has pretty much subsided. I exercise, I walk, but my endurance is not what it used to be. Again, it’s questionable how much natural aging plays a part in all of this? My diet seems to be better than it was prior to my cancer diagnosis.
My endocrinologist wants to put me on a bisphosphonate, after she gets my DEXA score results sometime in November. I don’t like the side effects from that classification of medications at all, and mentioning the name of any of them throws my orthopedist into a fit.
Your mention of a new medication gives me hope.
Best wishes to you in finding an aromatase Inhibitor that has fewer side effects for you. I’ve read many anecdotal stories on this website about people who changed AIs and had fewer side effects.
@mir123 I am dealing with alot of joint pain issues with the AI's I have tried and I did experience these issues before bc diagnosis I wish I had done more over the years to help the situation prior to my diagnosis Can I ask what medication you take or were taking that helped I was recently prescribed celebrex but have not started I am doing supplements that were mentioned by my oncologist but not sure that will be enough to get me thru the 5 years
@beachie1 If I was prescribed Celebrex I'd try it, I think, to see if it helped. My pain is due to surgery, sepsis, and loss of part of a lung 50 years ago so you can imagine I've tried many different things! It is mostly soft tissue pain, not exactly joints. I'm a fan of bodywork, and see a rolpher who helps with PT too. I use a topical anti-inflammatory, and soak twice a day in epsom salts. I also stretch and exercise (mildly) about 45 minutes a day, often with Thera band. I've taken a lot of Advil in my day, but due to kidney disease have been told to stop or if not always possible to cut way down and hydrate. I think in your case a joint pain drug would help, if not counter indicated. Pain patches--anti-inflammatory and lidocaine--can also help. And some folks get good results from acupuncture. I know it sounds like a lot, but I wish you the best finding a few things that really help and that make a sustainable routine for you. Consult with your PCP or whichever doctor is helping with pain and keep an ongoing dialogue open. I hope you find improvement.