10 years of hormone suppression

MJo · 12-31-2012, 01:22 PM

For those of use who finished 5 years of aromotase inhibitors -- Has anyone's oncologist suggested that they go back on AIs or tamoxifen? I finished 5 years of AI at end of 2011. I see the oncologist in April. I want to discuss the new findings that 10 years of tamoxifen is better than 5. I assume it the same for AIs. Has anyone considered starting again?

karen z · 01-01-2013, 12:59 PM

Hi. There have been a couple of other threads on this topic. One is called "More than 5 years on Femara Ontario ladies?" and another (I think but can't find right now) may have been started by Jean.

The AI data are not in yet but studies are being done on the effects of a longer duration. I know many people have talked to their doctors about this AI issue (not all have received the same answers) but you should definitely check in with your doctor (perhaps you can just call before April) and stay informed.

tricia keegan · 01-01-2013, 08:01 PM

My Onc said seven years was known to be beneficial but left the decision to me and I agreed, I do find the side effects increasing though, anyone else?? in saying that I'm glad to have it!

jaykay · 01-02-2013, 01:58 PM

After my 5 years on Femara (after 4.5 of tamoxifen), my oncologist asked if I wanted to continue on Femara. As Karen mentioned, the data was not yet in and I opted to stop in January of 2010. We figured I was "cured". My bone density was suffering even with Fosamax and Reclast.

Recurred in September, 2012 after 12 years. Still second guessing my decision to stop Femara. Hindsight...

Needless to say, if I had to do it over, I'd stay on the Femara for a bit longer.

Janis

karen z · 01-02-2013, 02:15 PM

Hi Janis,
Please do not regret your decision as it was (as far as anithormonals) pretty aggressive treatment then AND now. You were on something for 9.5 years. Even women in trials going on or recently closed have typically taken 10 years of something max (I noticed in the ATLAS article that the authors mentioned that perhaps the next wave of studies would be comparing women who had taken 15 years of T with those who had taken less). But that hasn't even happened yet. So, you were at the typical "max" for trials.....occurring now. I did notice that since you were early stage in 2000, and even though HER2 positive at the time, your signature does not include chemo or Herceptin is that right? If so, those may be other contributing factors, again......out of your control. I don't think any Stage 1 patients were likely to be getting Herceptin in 2000. I am just saying, and I can imagine how it would feel to get this news, is that I believe you did everything at the time that was "standard of care" and, as far as antihormonals, you and your doc were way ahead of the game. Plus, your BRCA indicates 1/2 neg. I am not sure what that means but likely another factor. Please keep all of these things in mind and do not feel that you were not "on top of things" at the time. It sounds like your treatment now is what you need (and folks know this now) and that you will beat this. Stay strong.

jaykay · 01-02-2013, 02:42 PM

Hey Karen,

Yes, correct - no chemo or Herceptin back then for Stage 1's although I did ask. BRCA 1 and 2 negative, btw.

Thanks for the encouragement and I know I will beat this again. It will be interesting to see if my doc wants to put me back on anti-hormonals after chemo/rads. We haven't had that discussion yet :-)

Janis

karen z · 01-02-2013, 02:56 PM

Hi Janis,
Sorry I misread the BRCA info.......even though I read it like 2-3 times. And, it is amazing that you asked for chemo/Herceptin twelve years ago. I really feel like you did everything you could (and much more) given what was most typical at the time. If you are still hormonal positive I am guessing that antihormonal therapy will be in your life once again. Again, stay strong. Get through chemo and you will find Herceptin (likely) a breeze- I know I did and most seem to. Take care.