20% estrogen pos Her-2 pos Should I continue AI past 5 years

Bootscootin

I am coming up on my five years of taking letrozole. At only 20% positive I am wondering if I should continue or not. My oncologist told me before I started taking it that it was not a “silver bullet” for me. I know there are tests that can tell the risk of recurrence and whether extended use of an AI would be beneficial but I don’t think those tests are for HER-2 patients. Does anyone have any experience with this

Ingerp

What does your MO recommend? I've told myself that even if it's recommended to me to continue past five years, I'm going to take a nice long break and see what life is like without it.

Bootscootin

I think he will want me to continue. I will see him on Thursday. My side effects are not too bad except for the weight gain. I would like to take a 3-4 month break to see if I can lose a little weight

ruthbru

I was 11-25% estrogen positive and felt very comfortable quiting after 5 years.

Salamandra

Can you ask him to do the breast cancer index test for you? I believe that helps predict the efficacy of longer term treatment.

To me the answer would also depend on the quality of life impact you've had from AIs.

SpecialK

I was Her2+ and did the Breast Cancer Index test at the five year point. BCI gives two results, a figure that predicts recurrence risk, and one that gives an estimate of benefit from continuing anti-hormonal drugs. There are multiple arrangements - high risk of recurrence and high benefit of continuing the drug, low risk of recurrence and low benefit, low risk of recurrence and high benefit, and the dreaded high risk of recurrence with low benefit. I was the last one... but my question for my oncologist was whether or not the high risk of recurrence was due to the Her2+ aspect since they are testing your original tumor material. His short answer was I don't know, and neither does the Biotheranostics rep, since they had discussed this. The test doesn't necessarily suss out that detail. I did request, and receive, a PET scan at that point because I felt that I was likely not receiving a great deal of benefit from anti-hormonals all along and wanted a snapshot of where I stood at the five year point. I had previous PET scans that had normal results, but this was my first abnormal one - bilaterally across the chest. Scary moment - and I was actually already scheduled for surgery with my PS the following week, so she did a bunch of biopsies with direction from my BS while she was in there. I had four different types of inflammatory process and a big (3cm) suture granuloma from my original BMX, but no cancer thank goodness. Another question for you specifically - since they do test the original tumor material - is whether you can you even have the test since the tumor material - if there was any - has been affected by neoadjuvent chemo and targeted therapy? FWIW, my oncologist did recommend continuing on letrozole since I was doing ok on it, and because I was high risk, and because low benefit is not necessarily zero benefit. I went another two and a half years, then discontinued because I needed some pretty invasive dental work done and the maxillofacial surgeon wanted me off all meds. It seemed like a good time to stop, and my oncologist agreed.

Bootscootin

Thanks to all of you for your input and suggestions. At my last appointment, in January, I saw the NP and we talked about the Breast Cancer Index. She indicated that she would ask the MO about it so I don’t know if it has been done or not. I guess I will find out tomorrow. I did not think about the fact that the tumor was changed by the neoadjuvent chemo and targeted therapy. I appreciated the comment that “Low risk” is not “no risk”. I have not had too many problems with letrozole. I had a lot of fatigue in the first 3-4 years following treatment but it has gradually subsided. My bone density seems to be holding steady. Prior to starting AI, I had normal bone density in all three areas. At second DEXA, I had osteopenia in two areas but now have osteopenia in only one area. He told me that most patients fall into two groups. One group wants desperately to stop taking it and the other group is desperate to stay on just to be sure. I probably fall in the middle and will probably continue if he gives any indication that I should and I think he will. They only thing I am concerned about is my weight, which can be a risk factor in itself. Maybe with a 3-4 month break this summer I could be successful with some weight loss. I have never had a PET scan. My insurance company denied it when I was first diagnosed

honeybair

I have now completed seven years of taking letrozole and have had minimal side effects. In fact, after changing my way of eating to high fat, low carbohydrate three years ago, I have dropped over 40 pounds from my highest weight. I am severely insulin resistant but due to my weight loss have been taken off a diabetic drug that I was on for years. I plan to ask my oncologist if I can continue on letrozole for a total of ten years. I have noticed hair thinning but that is most likely due to my age. I have been a walker for over fifteen years as well and I think that it helps to keep my bones strong. I am just grateful to still be here enjoying life with my sweet husband.

Bootscootin

Glad to hear that you are doing so well. I am desperate to lose some weight and know that I need to cut down on carbs. So hard though.

windingshores

I have talked with the folks at Breast Cancer Index and the result on benefit of extended endocrine therapy is "binary" so it is either yes or now. It is not a spectrum of low to high.

They have changed the terminology for risk of recurrence. My 5.7% risk was labelled "high" at BCI (cut off was at 4.8) but was termed "low" with Oncotype. They realize that perception of risk is subjective and some people are only happy with 2%, say, and some are fine with 8%.

I also had the Prosigna Assay at the 5 year point and that test had me at almost 10% (moderate) risk.

These test results can be all over the place, and each test has different standards for low and high and medium.

But main message with BCI is that either you benefit or don't from extended hormonal meds. It is not "low" but "no."

They cannot answer whether that means these meds NEVER benefited us, but it seems likely. I had 95% ER and 80% PR. One would think hormonal meds would be very beneficial, and Oncotype said it halved my risk to 6%.

The BCO folks said that the pathology results for hormonal responsiveness are like counting the cars on the highway and the BCI is like measuring how fast they are going.

Am I comfy with not taking them longer? No. I am taking a break to deal with my bones and still hope to do another two years.

Suzikutt

My insurance denied to pay for Breast cancer index test as they said the lab is out of their network, from my understanding their is only one lab to do that test .the bill is around 2500 $ .

Any one has this issue with her insurance ?
By the way I just finished my five years on an Anstrozol and doing okay with the SE .I tried the brand name armidix and the generic one teva ,now I am taking the blue point generic, I didn’t see big difference between all of them