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

I have been reading but not posting here for a while, and I would like to make a point of a well known statistic. 80% of all breast cancer is estrogen receptor positive. Although we are all different in shape and size and types of cancer, and even the genetics that get us here. We all have one thing in common we have breast cancer and on this thread at least, we all are estrogen receptor positive.
I don’t believe there is a single answer for this, if it was solved there wouldn’t be tens of thousands of people or more worldwide working on this problem. They work on our behalf to help find us solutions. So while there is no one right answer, there are some best possible (for now) options for many of us.
I like to tell people the last 17 years haven’t been all rosy, but I am still here to complain about it. 😂😂

Recurrence and spread are two different things. I have read that with hormonal cancers risk continues to go up even after 5 years. With estrogen negative cancers, if you make it 5 years, your risk is low thereafter. That is what I read but cannot cite right now.

It's been two years since my mastectomy and had I just had my first mammogram, it was clear, and I am so grateful. I took Arimidex for 18 months and have been off of it for eight months due to severe side effects. I had a PET scan after my surgery and it was clear. At that point I was told that chemo was "preventative" as was radiation. Then the pandemic hit and I was stranded away from home for three months. When I got back I met with the oncologist and said I would continue with the Arimidex but no chemo or radiation, I am 76. It was the right decision for me as my quality of life is more important to me than the number of years. I knew what the side effects would be with both options and that I wouldn't tolerate it well. Life doesn't come with guarantees and neither do the treatment choices. After weighing the options and considering that it seems everyone is "treated" the same, for me I made the right choice. Question everything, do your research and go with what you decide is best for you. My hormone levels weren't checked before I started the Arimidex or during the treatment. When I asked to have them checked they were lower than what is normal for my age and have only gone up slightly in eight months. I was told the test is accurate, so I wonder why it isn't done before treatment is started. At any rate, I am going to try to enjoy each day and enjoy my good health, and deal with the Fear of Recurrence that someone mentioned is an actual "condition". The oncologist said the first two years after a mastectomy has the highest risk of recurrence, so far so good. Now I just have to deal with the osteoporosis left behind from the meds.

I still can’t walk barefoot since tamoxifen and I stopped 7 weeks ago and Monday (yesterday) was first day I felt good. Bottom of feet still so painful
Now she wants to start me on Arimidex in January. I would love to tolerate any drug that could potentially save my life but at what cost ?

I hear what you’re saying !!! I had to stop tamoxifen after 9 mos. Oct 13 and I’m still dealing with side effects.

Thanks to all for this discussion

I have been following this discussion with great interest. I'm most impressed that you are all critical thinkers who work with your health care teams, research information, and weigh risk and benefits for solutions that work for you. While you share your experiences and what you learn, you do not tell others what to do. Thank you!

That said, I would like to post some thoughts and cautions.

When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks. Here is an article from Mayo Clinic that might interest you about evaluating claims made by the producers and/or sellers of supplements, natural products and other alternative medicines. http://mayocl.in/2tGC0Jp

Always discuss any new treatment, changes in dosage or alternate possibilities with your oncologist.

A few things that many of you have already stated clearly that I would like to underline:
1. While you share the diagnosis of breast cancer, each person's journey is different. How a person responds to treatment will be unique to them.
2. What works for one person may not for someone else.
3. Not everyone experiences side effects from aromatase inhibitors and/or tamoxifen. The people who experience no or mild side effects are less likely to post to an online discussion like this one.

MOST IMPORTANT
Keep this disclaimer in mind https://connect.mayoclinic.org/blog/about-connect/tab/disclaimer/
"All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community."

You can also submit a request online at Mayo Clinic Phoenix. That may be the better route to take if you have gotten through by phone. The online request is also available on this page: http://mayocl.in/1mtmR63

Oh sorry I thought you were at Mayo already. Yes you have to be a patient. Sometimes you need a code from the office.

Wherever I am a patient, I find communication works well on the portal and mine are all linked. Good luck!

replied to wrong person 🙂