Decide against aromatase inhibitors?

Posted by ruffianfan55 @ruffianfan55, Jul 2 12:02pm

I have DCIS ER+PR+, stage 2, treated with lumpectomy(clear margins) and radiation. I’m 70 and am leaning towards not taking aromatase inhibitors since they only lower the risk of recurrence by 2%. Has anyone else decided the same and do they regret it?

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Profile picture for dlardin @dlardin

I am 68, I took one anastrozole pill and my whole right hand froze up with trigger fingers. I was switched to letrozole, 2.5mil. I choose to cut the pills in half and take them Monday, Wednesday and Fridays. There was a trial done in 2010 where there was no difference in taking it like that and at a lower dose then the way it was being prescribed. I feel it is a compromise on my part. I've been on it for 3 weeks and so far no side effects. The half life of letrozole is 48 hours so I don't know why you should take it every day. I also take natural AIs, grape seed extract, DIM and a few others. I also take a calcium supplement and MSM 6000 mil for any joint pain. I gave up drinking any alcohol and only eat food we cook at home. I had a low oncotype score 5 with a reoccance rate of 3 percent. Everyone needs to do what they can live with

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Thank you! Just started letrozole and really appreciate you making us aware of this study. I looked for the study quickly and wonder if this is the same one you are referring to:
https://pmc.ncbi.nlm.nih.gov/articles/PMC4740217/

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@joyceallen
I truly believe that God encourages us to take proactive steps to help ourselves before turning to divine intervention. It seems like you might be feeling overwhelmed right now. I’m curious about your decision to stop treatment after pursuing surgery and radiation; is there something specific weighing on your mind?
Blessings,
Jake

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Profile picture for Zebra @californiazebra

@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! ❤️

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Thank you.

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I'm liking reading all the positive comments. I'm 81 years old. I had a lumpectomy 15 radiation treatments and started Anastrozole about a year ago. So far I have have no side effects that I'm aware of. Trusting in the Lord!

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Profile picture for prarysky @prarysky

Thank you! Just started letrozole and really appreciate you making us aware of this study. I looked for the study quickly and wonder if this is the same one you are referring to:
https://pmc.ncbi.nlm.nih.gov/articles/PMC4740217/

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Yes that was the study I stumbled across. I haven't been on it very long, 3 weeks, but so far no problem.

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Profile picture for cathcath @cathcath

I have been on Anastrozole for over 16 months. At first the side effects were difficult. However, over time, the side effects have receded and other than occasional constipation (usually because I didn't drink enough) and fatigue on some days, there are no longer any noticeable side effects. I will be using them for 5 years more. There are several aromatase inhibitors and if one doesn't work, there are others to try. You may do well on one while another is a horror show. It's not unusual to switch, doctors are used to dealing with making you the most comfortable that they can. I would suggest trying it before deciding against it. Many people have very few side effects on the right one.

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Thank you and everyone who is relaying their experiences, this is exactly what I was hoping for! I wanted to hear the good as well as the bad. I have plenty of time to decide since I need a bone scan before I start taking one and the first available appointment is Oct 30! My appointment with the oncologist is Nov 6. My surgery was May 30, radiation completed on July16. Has anyone else had to wait this long? I must have the bone scan done at the same facility that the first was done at 3 or 4 years ago for accuracy. This is crazy to me, do I need the aromatase inhibitor or not??

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Profile picture for dlardin @dlardin

Yes that was the study I stumbled across. I haven't been on it very long, 3 weeks, but so far no problem.

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Thank you for confirming that is the study. I've been on letrozole about 6 weeks, so a bit longer than you. Have noticed the arthritis in my thumbs is a bit worse but I can still use them. My hair, lost during chemo, is taking its sweet time to grow and the letrozole and/or chemo could be responsible.

Assume you can have serious side effects immediately, down the road at any time, or not at all. But in case things do change for the worse, it's good to have that study in my back pocket for reference.

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I have been on letrozole since April. At first I didn't notice symptoms except for an occasional hot flash. But within the last month my hair has thinned significantly and I am starting to have joint pain. I felt stomach issues and have much less of an appetite now than before. I am 70 and had invasive lobular breast cancer stage 1A grade 2 and clean margins with no cancer in the sentinel nodes when I had bilateral mastectomy in February. So my question is will these symptoms subside at some point or get worse? I have to be on an AI for five years. My oncologist said all of the AI drugs have the same side effects so switching to Anatrozole won't make a difference but it sounds like some of you have had better luck changing from Letrozole to it. Any insight out there? I don't think I want to stop them since even with them I have an 8% chance of my cancer returning because my oncotype score was 22. Everyone has to decide for themselves what is right to do but how do we cope with the side effects if they will last so long?

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Profile picture for prarysky @prarysky

Thank you! Just started letrozole and really appreciate you making us aware of this study. I looked for the study quickly and wonder if this is the same one you are referring to:
https://pmc.ncbi.nlm.nih.gov/articles/PMC4740217/

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Thanks for information about this study. Did your oncologist agree with this approach? I am wondering if I should share it with mine and see if they would let me take it every other day.

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I am struggling with that myself right now. I went from one very young oncologist who just yelled at me when I told her I didn't like the idea of taking AIs, to another more mature oncologist in a different health care system, telling me she wouldn't be my doctor unless I took them. I live in a rural area. It's not easy finding a third one.

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