Decide against aromatase inhibitors?

@shelbym
So sorry to hear that. That’s just crazy. Maybe it’s a genetic mutation they haven’t discovered yet? Maybe you’ve been exposed to some cancer causing agent somewhere along the line? Frustrating when you know there’s an explanation and connection, but no one knows what it is. You’re a trooper! Keep fighting! ❤️

My diagnosis sounds eerily similar to yours I turned 70 in Dec was diagnosed June with stage 1 E&P positive Her-2 Negative N lymph
1.2cm had lumpectomy July 29
Next week have to meet follow-up
o do not want Arastase or Tamoxifen too many side effects.

I've learned so much on this site. I'm the physician husband of a woman with EBC. There are so many decisions to make and each case is so dependent on age as well as tumor type stage etc. The emotional angst we had, which felt so lonely, is obviously an issue for so many. The medical world seems to have few answers on the pain issues so many of you have shared. Lack of empathy and hubris from many medical providers seems to be a common theme. There are so many combinations of factors that each case can present unique challenges. What have I learned in our case was to read, read, read, and ask ask ask. It is not impossible to search for guidelines from the major national and international tumor and endocrine societies. For my wife there were two pressing questions. Should she take an AI to lower recurrence.? What about the role of biphosphonates for her osteopenia? At 77 yo the decisions on AI were different than if she had been 57. But maybe the AI would have been more tolerable had she been started on biphophonates concurrently since she already had severe osteopenia. Those were her questions. We went to a major University Hospital breast center which was fabulous for her diagnosis, surgery and radiation. Does every chain have to have a weak link? We spent a year begging for more understanding of her pain.The weak link was in oncoendocrinology. 500 sleepless nights and our perspectives were just belittled and I was made to feel like a bricklayer, not a physician. Finally, we just decided to change hospitals. Is it inappropriate for me on this Mayo Clinic forum to mention names.?I don't know. But we went to DanaFarber last week and found empathy and protocol based care that matched the guidelines. Now, we have the correct care and guidance, whatever the outcome. I love you all for sharing and wish all of you the best.

I have a similar diagnosis, and Exemestane every other day is the best dosage pattern I’ve found. I constantly question the wisdom of taking an AI! I’m 71 1/2, and husband has major medical issues, so I need to be there for him in my “best self” if possible. I continue to take it, b/c recently when I played around with NOT taking it for an extra day or two, I felt worse. I’ve been doing this regime for 9 months…after refusing another pill of Letrozole, which caused bone pain in my legs. My only side effects now are some memory issues and occasional hot flashes. This is a hard one to know, factually, what to do!

I tried Breckinridge Letrozole and because of extreme total hip pain at the 2 year point, then tried Accord Letrozole and lasted 4 months on that till my leg muscles would just give out.

Each manufacturer adds different additives to their products.
Additives add to the problems.

I am off Letrozole til Oct and have to decide whether to take Exemestane.
I am 77.
Can’t take Anastrozole as both legs gave out after one tablet and pulse went up to 150 the next day.

Muscles in both legs above and below the knees just gave out…

I just do not want any more side effects…

To everyone taking hormone receptor drugs God Bless you ALL!!!!!!! Every Scientist, Drug Company every Oncologist Dr that prescribes should be CONCERNED about all of the known Facts— the miserable side effects!!!! the hormone receptor drugs that are offered how are they helpful when there are proven horror side effects in every one of them what percentage of ppl taking them do not get breast cancer er back? How is it they have not found BETTER more Natural less toxic side effects in 2025!!!!! This scares me what is the cancer medical field doing about this?

Hi Brooklyn @brooklyn22
Hormone receptors drugs can be difficult to take, but not everyone has really bad side effects. I honestly don’t think the doctors aren’t trying, it’s just the best we have right now. New research is looking for alternatives. If you’re mad at anyone it probably should be that research dollars are being cut - so those new better drugs are going to take longer to develop.
I was diagnosed with DCIS in 2022. Unfortunately now they have found pancreatic cysts. If you think hormone receptor drugs are horrible, you should read the feed for pancreatic cancer. Chemotherapy is what is keeping those folks alive - and those side effects are truly horrible. It’s amazing though, the people on that feed are the most uplifting that I’ve read. No complaining. They support each other, and suggest the next chemotherapy trial someone might try. It’s a beautiful thing!

@timely
Like you I had side effects with both anastrozole and letrozole. I was on anastrozole for a year until my fingers became so stiff that I couldn’t hold on to any object. The joint and muscle pain did get better though. Moved on to Exemestane. Everything was fine until I had mastectomy. I had to do warm compression to get rid of hematoma. Combination of that and Exemestane gave me petechiea. So my onco prescribed Letrozole. It’s the worst! After only three months and several aura headaches I had a full blown migraine that woke me up at night. So now I’m back on exemestane. The first week I took it every other day for my system to adjust. The second week I took it for two consecutive days then off one day. So far so good. I plan to stay on it like for a while. You might want to ease your body into it to see if it works better. Unlike Anastrozole and Letrozole, half life of Exemestane is 24 hours. Since the drug leave your body faster, maybe the side effects are less severe. If you decide to try it, please let me know how it turns out. Make sure you do light exercise like walking every day. That helps a lot with joint pains. Good luck with Exemestane. Hugs.

Yes, you’re right. With research funds are being cut we won’t see new and better drugs soon. I will have to go to pancreatic cancer forum to get inspiration. I hope your pancreatic cysts are benign. Best of luck.

hi ruby- Thanks for responding my response is the best we have right now is YEARS long overdue of BETTER less side effects! —everyone should be mad —sorry as much as we are all there to support each other, we all should not he happy that in 2025!!! they still do not have anything without known some debilitating side effects -no matter the cancer, if the cancer affected population doesn’t speak up for each other who will do anything?