What happens after hormonal tx? There goes my safety blanket:(

I'm so glad you raised this issue! Just saw my onc and I will finish letrozole on July 31. On one hand I'm soooo excited to be done, lots of side effects (it's been a tough mental battle to keep taking it), on the other hand, it's my security blanket and I'm so afraid to give it up. My onc says the research does not support 10 years and these are strong, relatively new drugs with unknown long term side effects. So....I guess I will stop at the end of July and try to get back to normal a little bit- well, the new normal.

I am like above, I ended my 5 years in june 08, it was tough ended the med but so glad it is over as my BP is back to where it was before

think it is all about what your stage was at the start and I was pure DCIS. I have passed the one year with no AL so fine

Yes, you will feel better. I felt pretty good on but feel even better now that I'm done. Nothing earthshattering for me, more like a subtle lightening of my mood; I sleep better, am less achy etc. I was kind of scared to be done, but there is (as of now) no research that supports staying on Als longer than 5 years (a friend of mine's oncologist commented to her that research is far enough along so if there was a BIG benefit being shown, it would have been leaked by now). Anyone who is told to stay on right now either has a more advanced cancer (and the doctor is hedging his/her bets) or he/she is (in my opinion) being over zealous, as these are serious drugs with serious potential consequences as well. I was very glad that I was able to be on it for 5 years, but I am also very glad to be DONE!

Hi, if you want to continue treatment, find another doc who will support that. That's what I intend to do.

wishing y'all well!

I just had my first Prolia injection Saturday. Sunday morning I woke up very early with lower back pain (very unusual). The same pain Monday and today, although it is not as bad as it was Sunday. Could this be caused by the Prolia? Maybe I just need to buy a new mattress.

I had osteoporosis before being diagnosed with breast cancer. I have had Aredia, Zometa, and Reclast infusions. I have been taking femara since 2008. My onc said 5 years, then 8, then 10, and now maybe the rest of my life. I have had very little SE's from femara, except it surely has not helped my bones.

I agree! Especially since it was a lower stage and grade!! Less than a centimeter, and no nodes?! Sounds like over treatment to me.

My first MO said the said thing--expect to be on Tamox/AI for 10 years if not the rest of your life! Yikes. He mentioned there would be new studies coming out to confirm.

i think it also depends on age. For us pre-menopausal women there is a benefit to staying on for 10 years. Im still not sure if thats a combo if tamox & AI Everyones benefit is different depending on their own reccurence risk.

It does go down every year, but not as drastically as the TN ladies does

Thanks for the link, Katcar. I'm only 4 months in but was told that if I responded well (and I do), to expect to be on an AI for at least 5 years and probably 10. My hope is that by that time we'll have another 'security blanket' option. Of course, it probably won't be generic, so will cost the earth...

I understand that struggle, Katcar. It's tough. I feel very fortunate to have had the opportunity to do neoadjuvant endocrine therapy; it would be worthwhile if only for the knowledge of whether I am responsive or not. I think that eventually that may be standard for ER+ cancers - I would hope so, anyway.

I'm sure that going without either radiation or chemo feels something like stepping off a ziplining platform for the first time; you know it SHOULD be o.k. but still, there's no safety net underneath... All I can say is that I hope tamox. does work out very well for you and that you'll get enough reliable information that you feel you can settle into the regimen and feel comfortable with it. I know that everyone dx with cancer lives with this uncertainty to one degree or another. Breast cancer may be somewhat more so because there are so many aspects to treatment and so many facets to the disease. It definitely adds to the stresses.

People such as yourself who share so generously help counterbalance that stress. I hope some of that good karma lifts your day and eases the struggle a bit.

Good morning lovelies!

Hopeful, You are so eloquent and have a way with words. You are the one who shares so generously. I don't know how you made so many posts in such a short time. Where do you find the time? I can barely keep up with reading. And somehow, I still missed that one can do neoadjuvant hormone therapy before surgery. I would have explored that option had I known about it. I just read about your cousin and how she did not rads or chemo either, so that makes me very "hopeful." Is she taking an AI or Tamoxifen?

Ruthbru, I sure what like to find that quote about the 2-5% as I'd like to understand who are the women who benefit. I will try some hunting and pecking myself and see what I come up with and will share if I find it.

Hi I also finished my five years on Femara. My oncologist here in Toronto also said no research showing additional benefit to stay on longer. I am now 61 and I guess risk of fracture would be greater on meds. Anyway my breast surgeon said best way to stay healthy is exercise, keep good healthy weight. I have read this before and she said it again they have found 25% less recurrence in women who are a healthy weight and exercise. I better get my act together! Started walking on treadmill, walk dog a lot, need to lose 25 pounds (god I have been saying that for 10 years argggg!

Okay, I have been looking at clinical trials and extended endocrine therapy all afternoon & now have to get ready for company! The 3-4% benefit for extended use came from an advertisement from a  company that advertises a new test called BCI (Breast Cancer Index.....I don't know anything about it or how useful a tool it might be, maybe someone else does....it is supposed to test your chance of late recurrence).

What I got from the trials was basically the points I will copy below (the bolding is mine):

"In pre-menopausal patients, tamoxifen in association with a longer use of LHRH is the gold standard especially for patients that continue to menstruate after chemotherapy, although it is actually not possible to identify subgroups in which the hormonal therapy has a little benefit."

and

"In post-menopausal patients we are waiting for more data to identify the better strategy to use AIs, upfront or switching strategy, actually both results valid. We need more data to extended therapy with AIs after 5 years and if we decide to prolong therapy we must outweigh benefit and risk of toxicities. Thus, methods for improving the use of endocrine therapy, such as exploring new classes of agents, dosing, scheduling, combinations, and the addition of targeted agents to reduce the development of resistance, are crucial for the next future."

and to sum up:

"Women with estrogen receptor (ER)+ early breast cancer (BC) are at continuing risk of relapse up to at least 15 years after diagnosis, despite being on adjuvant endocrine therapy for approximately 5 years. Extended adjuvant endocrine therapy with an aromatase inhibitor (AI) after 5 years of tamoxifen further reduces the risk of recurrence in postmenopausal women. More recently, continuing tamoxifen for 10 years has also been shown to further reduce the risk of recurrence compared with 5 years. There are no direct comparative data on the relative merits of extended tamoxifen compared with an AI; indirect evidence suggests that an AI may have increased efficacy but a greater adverse effect on quality of life. Results are awaited on the need for continuing front-line adjuvant AIs for more than 5 years. The next challenge is to determine which patients will benefit from this long-term treatment. "

No kidding!!!!!!!

 

Lilyn, I'm also from Ontario - north of Toronto. I'm at Sunnybrook. Where is your oncologist. I'm coming up to 5 years in February, 2016 and anxiously awaiting to hear whatever news I'm going to get. Did you go off of Als. I'm on Femara and have handled it well. But, I must say I stepped up my exercise program and diet regime.