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Members shared thoughtful perspectives on deciding whether to take hormone therapy (aromatase inhibitors) after radiation, with most... Read more
@A MyBCTeam Member
Thank you for mentioning AI’s and stating that you are taking the lowest possible dose.
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I'm on Letrozole and will need to take it or another AI for the rest of my life. I started last November. I'm dealing with breast cancer for a 2nd time now, and this time I'm stage 3C with a very aggressive cancer. I am also on the CDK inhibitor called Ibrance for 3 years.
The only side effects I have from the Letrozole are hot flashes and my insomnia, which I've had since grade school, is a little bit worse.
The first time I had breast cancer, stage 1A hormone positive, I was not menopausal and they wanted me to take Tamoxifen. I refused that drug due to the blood clot and endometrial cancer side effects. I have been at high risk of blood clots since my early 20s. My first cancer wasn't aggressive or at high risk of returning.
In 2019 I was diagnosed with endometrial cancer. I had the hysterectomy and radiation. The cancer was also hormone positive. Nobody ever suggested I should take an AI for the breast or endometrial cancers after the 2nd cancer diagnosis and my new state of being in surgery induced menopause. The endometrial cancer came back 3 times and still nobody suggested I should be on an AI on a regular basis. I've been told my endometrial cancer is stage 3 and stage 4 by different doctors.
Now I'm dealing with a new and totally different breast cancer than the first breast cancer. I wonder if the endometrial cancer would have returned 3 times or if I would have this 2nd breast cancer if my OBG and/or breast cancer oncologists would have suggested I needed to take an AI. I have fired both of those doctors for this and multiple other mistakes they made in my cancer care. It's too late for me now and hindsight is a b***h.
I take the lowest dose possible of both the AI and CDK inhibitor. There are studies that show taking the lowest dose of an AI is adequate for most women. Talk to your doctor about taking the lowest dose. If the side effects of one AI are too much then try another AI. Don't become a statistic like me and wonder if you could have remained a 2 time cancer patient by taking an AI instead of becoming a 6 time cancer patient like me.
View my story as a precautionary tale. Right now I'm really happy to say that I have outlived my endometrial cancer survival statistics. My 3 year survival odds were 33% and my 5 year odds were 13%, but I'm still here. Please try the AI ❤️
It would seem reasonable to try- you may be one of the lucky ones that minimal, or manageable side effects. Then there are ways that the meds can be tweaked- whether it is strength, dosing schedule, a different manufacturer, or even a different med. Remember, we usually hear the stories from people who are struggling with side effects because they are looking for strategies for dealing with those. A lot of times when the pink sisters here, get to the blockers phase with their protocols, if they are handling them well, they tend not to check in as often, as they are off living life! Keeping you in prayers as you navigate through all the info to make the decisions that are right for you! Hugs!
@A MyBCTeam Member
I try to respond to these posts because I am a prime example of what can go wrong without AIs even if you are early stage with low recurrence odds. And, as you mentioned, because smaller doses do exist, even for someone like me with an aggressive 2nd round of stage 3C breast cancer 😀
@A MyBCTeam Member, I completely understand how you feel. I will be starting in 2 weeks and I have been so overwhelmed with if I should or not take the hormone blockers. I decided to try and see how it goes. I want to give myself that opportunity. I just don’t want this cancer back. I hope and praying I will have manageble side effects. The best of luck in your decision. It’s not easy.
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