Aromatase Inhibitors: Did you decide to go on them or not?

@cindylb I'm so sorry you are experience all of that lymphedema. I'm fairly lucky, so far don't have lymphedema but have had ongoing problems with axillary web syndrome (cording). I do all the exercises I've been shown by PT, but those pesky cords will come back with a bump or fall so I have to be watchful as you do with your lymphedema, but at least I don't have all that swelling. Oh the joys of breast cancer.....not!

@kathyomaha55 For me, the switching from anastrozole to letrozole and then finally to exemestane has been better. I'm at 1 year down and 9 to go, but I keep telling my husband that I'd love to just quit altogether. I initially had invasive ductal breast cancer and second tumor was neuroendocrine so unfortunately the odds are not good if I go off of the exemestane. I really cannot complain as I have two friends in my support group who have metastatic breast cancer and one just recently died.

I found the following article of interest, published in the medical journal Lancet last December:

"The benefits of the aromatase inhibitor anastrozole for breast cancer prevention in high-risk postmenopausal women extend well beyond the five-year treatment period, according to long-term data from the International Breast Cancer Intervention Study II (IBIS-II) Prevention trial.

"The new data were featured at a press briefing today at the San Antonio Breast Cancer Symposium and simultaneously published in The Lancet.

"Five years of treatment carries on producing continuing benefits right out to 12 years," study cochair Dr. Jack Cuzick of the Centre for Cancer Prevention, Wolfson Institute of Preventive Medicine, Queen Mary University London, said during the briefing.

"From 2003 to 2012, the study enrolled 3,864 postmenopausal women at high risk for breast cancer; 1,920 were randomly assigned to anastrozole (1 mg/day) and 1,944 to placebo for five years, with similar adherence rates (75% for anastrozole and 77% for placebo).

"Results reported in 2013, after a median follow-up of five years, showed a 61% reduction in new breast cancers (from 4.6% with placebo to 1.8% with anastrozole), and a number needed to treat to prevent one breast cancer in the first five years of 36, Dr. Cuzick reported.

"The new long-term data show there continues to be a "significant" 36% reduction in new cancers in years five to 12 (4.4% in women who took placebo five years vs 3.5% in those who took anastrozole), he said. "This is statistically significant in its own right, and although numerically less than in the active treatment period, not significantly so," he added.

"Over the entire 12-year period, there is a 49% risk reduction with five years of anastrozole (from 8.8% with placebo to 5.3% with anastrozole), with a number needed to treat over that 12-year period of 29, "which is substantially bigger than seen with tamoxifen at this stage, where the number needed to treat was 49 to prevent one breast cancer," Dr. Cuzick noted.

"No excess of fractures, other cancers, cardiovascular disease or major adverse events was seen in the extended follow-up."

Posting some good news for a change (well, I hope). I have my FIVE YEAR post mastectomy check up in early June. Due to Covid 19 it will be a phone visit for now. Not sure how that will go exactly. Anyway, I believe that I will find no recurrance of my cancer and that means checkups once a year instead of every 6 months. So, a happy milestone is about to be passed. It will be seven years since my diagnosis for Stage 0 LCIS. I wasn't able to use the AI drugs or Tamoxifen so perhaps I've gotten lucky on this front. Hope so. I am struggling quite a lot with damage to my hand and arm from lymphedema and the cellulits and sepsis I experienced last November. It's been an unexpected pitfall. So, my advice to everyone is............watch for signs of lymphdema if they fiddled with your lymph nodes. I really thought mine was mild and well controlled and i wasn't careful enough (or just unlucky) and as I approach a time when I could be completely happy at Five Years I'm about 'half happy', ha ha....But.......it's possible to make it through this without the AI's (so far). Hope this helps someone out there to feel a little better if they can't tolerate the pills. Hugs.

I was having pretty severe side effects after a year and a half on Anastrozole, switched to Exemestane, and after a much shorter period and experiencing extreme neck and joint pain. I stopped the Exemestane. I saw my Oncologist and then switched to Tamoxifen. I've been on that since December 2019 and it is a MUCH better choice for me. Best of luck to all of you with whatever AI you choose!

I read that 20% of women stop taking an AI inhibitor in the first 2 years. I don't know if they studied the re occurrence rate among those people. I agree that doctors need to support whatever decision we make. I switched to Exemestane from anastrozole, I find the side effect much more tolerable now - I'm hoping to go the full 5 years. Some patients they are keeping them on it for 10 years. I'd like to see the difference in re-occurrence rates in 5 vs. 10 years treatment. I just know the survival rate of metastasized BC is like only 25%.

Thanks for this tip. I will try that!

@pattycincinnati I had similar problems on anastrozole as well as exemestane plus weakness. I switched my exemestane to the morning and don't take the pill until after I eat breakfast and that seems to help quite a bit.

I definitely do not have the answer but I have similar problems and I am on tamoxifen. I experience nausea along with it mid afternoon, I also have bouts of what I remember “morning sickness” being like especially when I start to fix supper and meat is cooking. I have discussed all this with my oncologist but doesn’t seem to have an answer.

I have been having stomach problems while on Anastrozole with a few "blowouts" every morning after coffee and breakfast and loose stools in the afternoon. Trying to figure out how to help out with this. Anyone have any ideas?