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

I, too am concerned about taking Letrozole. I finished my treatment (surgery and 5day rad), in November ‘22. My oncologist has vehemently recommended the AI prior to treatment during consultation and this week during post exam. She actually said my cancer may “come back a stage 4”. without the AI. My cancer was caught early, stage 1, low grade and small tumor. I opted for the radiation instead of the pills, but now the oncologist is insisting. I have osteopenia, am 74 and don’t historically do well with meds.
As a footnote, 30 years ago my OBGYN prescribed PremPro to help me during early menopause, which contributed to my cancer. Now, another expert wants me to take another pill to “help” me. I’m very wary…has anyone declined the AI? Anyone had a recurrence?

Unfortunately Bengay and Tylenol do little against high cholesterol and osteoporosis. I am 63 and have been on Anastrozole for 1 year. A visit to my primary doctor last month showed my bad cholesterol is in the high range for the first time even though I exercised and got my weight down to normal range. The pain in my hips is gradually getting worse. On the upside strength training has improved overall fitness which will help with stability.

tenayalake, Good luck to you also. It is my choice not to take the pills, The
Drs keep pushing them, they don't know how bad it makes you feel.

tenayalake86
I am 81 and they gave me radiation for 5 days, I was to take the pill after
radiation but after reading all about each pill, there all in the same family
and block the estrogen. the reporting from this site I decided my quality of
life is more important than feeling bad every day. I chose not to take any pills,
they will check me every 6 months, and as you get older the slower it grows if
it should come back.

Wow. I am sorry to hear that. I had been taking anastrozole for almost 7 months when my joints locked up. I didn't have radiation because women after 70 don't get much protection statistically. Doc allowed me a brief vacation from the anastrozole for Christmas [which I stretched to 3 weeks] because of the anxiety. Do you know what the side effects of Lestrozole are? I see my onco in mid-March and I expect he'll switch me to that. Good luck and thanks for writing.

I appreciate the words of support, and I am happy that so many of you have been able to take them without any severe effects. I've been on anastrozole for a year now. The side effects weren't bad at first, mostly just really bad hot flashes, but they don't bother me anymore. I have hereditary high cholesterol though, and had osteopenia at my initial DEXA scan. Haven't had intercourse with my husband since my diagnosis (too painful). I have memory loss and confusion. The pain and stiffness in my knees is pretty bad. I'm 49, but I feel like I've aged 20-30 years in the past 12 months. I have my appointment with my oncologist in a few hours though, so I will voice my concerns to him.

Thank you to everyone who has shared their experiences on this thread. I have spent a considerable amount of time reading through it.

I'm currently 49, been on anastrozole (arimidex) for one year. Have my one year appointment with my oncologist on Friday, where I hope to have a discussion about the side effects of the AI. I went through menopause at 45, when I started HRT to help with the symptoms. Two years later (2021) I was diagnosed with IDC, presumably from the HRT but I don't think that can be proven. I don't have an oncotype for my tumor (is that something that I should have?), and my doctor never discussed the recurrence rates, but I didn't ask. I have a 9 year old son with moderate-mild autism, and my main priority is living as long as possible to make sure he is set up for success in life. I did everything my doctor said without question. What I do know is that my OB said that if I had to get cancer, this was a very good diagnosis to get. I was told my tumor was slow growing and non-aggressive. Clear margins and no lymph node involvement. ER/PR+, HER2-, Ki-67 is 8%. Lumpectomy and 25 radiation treatments, no chemo. My mammogram in September was good, and I have another scheduled for this September. My genetic testing showed no BCRA positive genes.

I have been taking anastrozole and dealing with the side effects mainly because I want to live as long as possible for my son. I have joint pain in my knees, mild hot flashes (gabapentin has helped), and vaginal atrophy. My husband and I haven't been intimate since my diagnosis, because it's just too painful. OTC remedies are too painful to use correctly (I have tried). I have been on the AI for a year now, and I have been having brain fog and memory loss. It's been so bad that I was worried I might have early alzheimer's. I was almost in a car accident a couple months ago, because I was spacing out so bad at a 4-way stop that I started to go when it wasn't my turn. That terrified me, and I still don't know why I did that. I stumbled across a study that showed AIs can cause cognitive decline and memory loss, so I did some more research and also learned they can cause high cholesterol. I have had high cholesterol since I was 20 years old. Maybe it's genetic? I spent 14 years active duty army, and in the best shape of my life my cholesterol was high. I've gained 10 lbs since menopause, but I'm still active and do high intensity, bootcamp style workouts 4 days a week. My initial bone density scan a year ago said I had osteopenia in my left hip and femur, but the right side was normal.

A year ago I was worried about getting a recurrence, but now I am worried about my overall long term health. I'm only 49, and I can't help but wonder if these side-effects are reversible after I stop taking the medication in 4 years (assuming I continue to the end). Am I risking increased chances for heart disease, stroke, or osteoporosis later in life? I know nobody here can answer that, but these are the questions I am going to ask my oncologist on Friday. I certainly do not want cancer again, but I feel completely in the dark regarding the risk of recurrence vs. the potentially life shortening risks of these side-effects.

Thank you for taking the time to read. It feels good to get that off my chest, and to people who understand what I am going through.