To do or not to do ?

[mimiflower07]

This is the question that I'm wracking my brain. Do I stay on the
A.I s it's been 6 yrs. I started with tamoxifen then switched to an AI
After my oop ! It seems many of you have options . I'm confused, wouldn't I
Have to stop if my onc says this is not the current practice to continue A.I beyond 5 yrs..
I really don't know what to do. I was node neg, but T was 2.5 no vascular involvement. Had my ovaries yanked for good luck. I miss my estrogen(for lots of things, that's another conversation) back to the AIs, I'm not loving them. Biggest s/e is my spinal pain which they tell me is arthritis,insomnia and fatigue.
I'm thinking I want to come off ... But I'm bloody triple positive which means what exactly. No one say much about us really. So I'm highly er +++, her2 +++the oop should rid most er. The AI now impact my fat producing er.
Do AI really do much for the her2 ?
Should I switch back to tamoxifen for 4 more years, try to save my bones and heart ... What about the heart ! I need that for a few more years.
I know this is such a wonderful place to be but I'm done analyzing every thing.
Sorry I'm rambling just having a moment where I'm ready to move on.
We've done so well but these s/e are a real mood deflator through the yrs . Thanks to all of you . I know I can come back any time or when I'm stuck.
Off to bed !!
Suzanne

[sarah]

It's a personal decision to be decided with your onc.
I was on AIs for 6 years - that was in the days when 5 was the norm. Personally now I wish I had stayed on 10 years since the studies on that seems so strong but I stopped just before the news came out.
love sarah

[Becky]

Hey Girl - nice to see that you are doing so well. I feel your pain about AIs. Like you, I also had an ooph and I am approaching being on Arimidex for 9 years. At this point, I'm going for the full 10. I have had no joint issues but I am having libido issues and vaginal dryness issues which are also (psychologically) big issues.

There have been some studies that say if you are Her2+ but also ER/PR positive that the 10 years may not be as helpful than it is for those who are only hormone positive. However, what does that mean if you are strongly hormone positive? Secondly, it is also felt that estrogen is the biggest culprit for the beginning stages of any breast cancer, even if when you are ultimately diagnosed the bc is hormone negative. It is felt estrogen is the big party starter. These studies revolve around women who are BRCA 1+ and those cancers tend to be triple negative. Hence why it is recommended BRCA women at least get an ooph first and then go back and get the breasts removed. Stop that estrogen.

I am only 50% ER+ and PR negative but I want to stay on (at this point) to try to prevent a second new BC. I am hopeful that I am out of the woods for the first one from recurring but you never know. If more Arimidex will allow for not getting a new BC, I'm all for it. However, it is a very personal decision.

Again, its nice to "see you" again and know you are well.

[tricia keegan]

I also am highly triple positive and had my ooph in 2006, I've been taking Arimidex since then with some similar issue's to Becky, however I've agreed to take it up to ten years but will continue for more if needs be, I do have some side effects but better than the alternative!

[sassy]

Hey Suzanne!

Great to hear from you again!

I agree with others that it is a personal decision. Having said that , I want to do everything I can not to have to deal with this again. Heaven knows I've had to deal with a lot of side effects from treatment, but I would do it all the same given the information I had at the time. I truly believe the collaboration with my onc and course we have taken in my care has set me on the best possible path for a cancer free life going forward. My trials with all three of the AI's were of my own choosing with the goal of exploring the side effects of each for me.

Because of the Femur fractures from Zometa (see my Easy Button post) I am no longer a candidate for an AI, after a total of eight years. I started a break from AI's last April and after the discovery of my femur fracture in July, my onc and I agreed for a break for the period of one year. So I've been flying solo from all meds for a year now. Next month I will start Tamoxifen with the intent of staying on it indefinitely.

Like Tricia, I was triple positive.

Best of luck to you----hug the kids for me.

[mimiflower07]

Hi guys, so wonderful hearing from you Rhonda , Tricia, Becky and Sarah. I do appreciate your thoughts. It's unreal how much better I feel off the A.I 's. I've taken a few breaks due to spine pain. I'm seriously having self doubt. I know it's a very personnel decision, I just trust you ladies. Thank you.

Rhonda the kids are now 15 & 12 .. I can't believe it.

Best wish to all
Suzanne

[sarah]

Hi Suzanne, did you see kristen's post about lyrica for neuropathy? wonder if that would help, check out her post.