10 years HT, based on old treatments..

Walden1 · January 2019

I am at the beginning of my journey with HT, and asked whether I was likely to do 5 or 10 years. She said there are some who benefit from 10 years but it’s not likely in my case. This surprised me for two reasons

1) recent studies seem to be changing practice toward recommending 10 years for more patients.

2) In her opinion the use of 10 years is still debatable in part because the data supporting 10 years of therapy is based on older treatment methods (older chemo, rads, HT etc). So basically this data doesn’t apply to recently diagnosed patients.

Anyone else ever heard this from their doctors? Is the research supporting 10 years controversial?

Peregrinelady · January 2019

When I was first diagnosed, a study had just come out saying that 7 years was just as good as 10. Recently, I have read that 10 years is more beneficial. I was given the BCI (Breast Cancer Index) test by my oncologist shortly after diagnosis. It indicates that I am high risk of late recurrence (5-10) years and would benefit from an extra five years. What I don’t understand is why this test isn’t used more to find out if someone should extend their therapy, rather than just what the oncologist thinks. I am not sure why BCI isn’t embraced as much as Oncotype since both use an individual’s tumor to decide on treatment. I do know that my result scared me, but also I have never skipped a pill and will take them as long as possible. Btw, I don’t think my oncologist was supposed to order it so soon after diagnosis. Most wait until a patient is close to the 5 year mark.

Ingerp · January 2019

I've just recently started an AI and I figure we have five years to figure out if I need to be on it longer or not. ;-)

Walden1 · January 2019

Ingerp-Good point. I’m trying to get more info now because I am on an AI and I’m wondering if it’s as effective to do AI for 5 years and then Tamoxifen, or the other way around? Also I am just curious if the 10 years of therapy is now considered standard of care for some patients or if it is controversial amongst MOs

CoastalXPat · January 2019

My Onc & I talked about this a bit, specifically the ATLAS and aTTom studies. Her interpretation at this point in time is that the risk reduction with continuing for 10 years depends a lot on your particular overall risk. So if your risk is higher you might get more benefit from continuing on. On the other hand if chances seem slim you'll get a recurrence and if the SE's are rough, then it might be well worth stopping after 5 years.

Given discussions with my Onc on my specific case, I've decided to stop after the 5-year mark. I'm really hoping for a return to a better relationship w/my weight, less forgetfulness, maybe less random hot flashes...

Peregrinelady · January 2019

I am curious what your oncologist said that made you come to that decision. Did she mention the BCI test? I ask because my Oncotype was low (12) and my BCI was high risk of recurrence. If I hadn’t had the BCI, I would have thought 5 years would be enough, but now I am definitely going for ten years.

Walden1 · January 2019

Peregrinela-I wonder how many doctors are using the BCI test for planning hormonal therapyat this point.

Peregrinelady · January 2019

That is what I am trying to figure out. It seems like not very many people are using it for their decision making and yet it gives individual information about your tumor just like Oncotype. Even though I didn’t like my results, I know now that I am one of those people who would benefit from 10 years. I am not sure how else you decide whether to continue beyond five years or not. How can an oncologist advise you without that info?

CoastalXPat · January 2019

Hi Peregrinelady,

I didn't get an Oncotype or PCI test because I was HER2+. The HER2 component means you're already at a high enough risk of recurrence that chemo (+ Herceptin & Perjeta) are strongly recommended. It means an Oncotype test isn't going to provide information that will affect decision-making - the HER2 basically overrides Oncotype.

So what led to my decision to stop Tamox after 5 years? It was a combo of all the previous studies plus my specific situation. If I hadn't done chemo, my chances of not getting a recurrence were about 70-75% (based on other studies of Her2+, ER+, node-negative ladies). By doing chemo+herceptin+perjeta, my chances improved to 90-93%. Chemo was absolutely awful but those numbers convinced me to do it (someone phrased it this way - if you had a one in four chance of winning the lottery, would you buy a ticket?). Now I'm no authority on this, but it looked like 5 extra years of Tamox would move me up to say maybe 94 or 95%, which is actually rather sweet.

So it's my personal decision - I'm okay with my 90-93% chance, especially because I don't like what the Tamox is doing to me in terms of SE's. Plus I'm doing other things to reduce risk like exercising regularly, keeping a healthy diet, I'm not a smoker, and I never miss a Dr's appt. Also with HER2+ it seems more recurrences happen in the first couple of years. But if my chances were lower, say 80% or 70%, etc., I'd probably be a lot more inclined to stick with the Tamox for 10 years.

I should add that my onc made it clear that the usual recommendation is to reduce risk as much as possible, as long as the SE's are bearable. But she also supported my decision. I think it's important to consider your risk of recurrence w/your onc and whether it's worth going through another 5 years to reduce that. After all, as we all know, cancer sucks.

Wishing you the best of luck with this -

Peregrinelady · January 2019

Coastal, thank you for your detailed explanation. I didn’t notice that you were HER2 positive. I think that for you, you really hit it with the chemo, Herceptin, and Perjeta. I, however, didn’t do chemo or radiation, so the antihormonal is really my only treatment. I understand your decision better now and sometimes wish I hadn’t had the BCI and could be finished in 1 1/2 years instead of 6 1/2! Glad to see that you are five years out and wish you well.

10 years HT, based on old treatments..

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