About to hit 5 years on Tamoxifen and then Aromasin-- stay on?

Christine2000

About to hit 5 years on Tamoxifen and then Aromasin-- stay on?

Christine2000

hey all-- I will hit the 5 year mark in November. I will see my oncologist in Dec to discuss but I'm curious what others have decided--

sbelizabeth

Christine, I was diagnosed after menopause so no tamoxifen for me.  But my oncologist said she wanted me on Femara for ten years. 

My side effects have been tolerable; some achy stiffness in my hands, hips, and knees, but I'll do whatever she wants me to do.  For ME, and I'm speaking for myself only, the side effects don't outweigh the benefit of shutting out any estrogen,  My original path report stated the cancer was 95% estrogen-receptor positive.

Exercise helps.  A lot.

YATCOMW

I've now passed ten years with Femara....it was tolerable...aged my skin terribly but I am still here....

 

I too was 98% ER/PR so I didn't want to stop at 5.

 

Jacqueline

peacestrength

I was highly ER/PR positive and my MO has recommended 10 years as well...I want to be here in 10 years.  I'm completely fine with this - with side effects and all, I'm so thankful to have this medication.

proudtospin

mine said I could end at 5 years but I was earlier stage at the start and think that is a factor

Momine

I am supposed to be on more or less indefinitely, as far as I can understand. 

goutlaw

Any long term Stage 3 Survivors without the Hormonal meds???  

Any other Forum with Long Term Stage 3 Survival???

TectonicShift

.

Elizabeth1959

I had a 16.5 cm tumor.  My oncologist laughs when I ask when I can come off letrozole.  I have stiffness too but overall a great quality of life.  I think the answer for me is indefinitely.  I believe late recurrence remains a huge risk.

Elizabeth

Sarahlou50

Hi goutlaw

I was diagnosed back in 1999 HR-/PR- so tamoxifen was no good for me but I am still here...

Sarah

Kathleen26

I am post-menopausal and will be on Tamoxifen indefinitely.   From what I'm hearing Stage III ER+ patients are being recommended to be on some form of anti-estrogen therapy for as long as they can tolerate some form of it, or it stops working.    If Aromasin or other AI's cause problems for you, you can go back to Tamoxifen.

lisa137

My doc said I'd probably be on them forever.

Anonymous

I hate taking ANY prescription meds so am going to hate being on something or other for life.  But the stats seem to show a benefit -(can't remember how much percentage right now).  Coming up on the 5 years on tamoxifen this month so onc will see if I can switch to an AI.  Does anyone know or have asked what extended benefit there is to tamoxifen longer than 5 years even after menopause?  I tolerate it very well and am anxious about femara or the others.  

Kathleen26

Before the AI's came along, there was only Tamoxifen as a anti-hormonal therapy for ER+ breast cancer.   It has always been used in post-menopausal women and is as effective in post-menopausal women as pre-menopausal women in preventing recurrence.   When the AI's came along, which are only for post-menopausal women or those who have had their ovaries suppressed, clinical studies showed them to be marginally more effective than Tamoxifen in preventing recurrence, and they did not have the scariest side effects of Tamoxifen (DVT/blood clots and Uterine cancer).   So doctors started switching post-menopausal women to the AI's, especially once they became available as generic drugs.   All the studies I've seen of taking anti-estrogen drugs for 10 years or more have been about Tamoxifen.

Of course, anyone who's taken the AI's knows they have their own side effects.   But the idea that Tamoxifen is not for post-menopausal women is not correct.   I think doctors allow people to think that because they want them on AI's.   But Tamoxifen is still a good alternative for post-menopausal women.   It is also protective of bone mass unlike the AI's that are well-known to be associated with osteoporosis.

Whether Tamoxifen or an AI is better for a specific person is somewhat of a crapshoot, since all the statistics only speak to what has happened to large groups.   And no one knows until they take a specific drug whether the possible side effects will apply to them or not.   There are some women who have a genetic issue that doesn't allow them to take advantage of Tamoxifen (CYP2D6 genetic issue).   If you have that issue, then Tamoxifen is not for you regardless of whether you are pre-or-post menopausal.   The problem is availability of the genetic testing to find out.   But if you've been on Tamoxifen for 5 years and have not had a recurrence, chances are it's working for you.