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

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

Thank you for responding!

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@saucy

My doctor wants me on Anastrozole as a preventive, had mother and sister with breast cancer. I'm 67 healthy and active and after reading the side effects from this drug decided to take my chances and try eating healthy and exercise . Not sure I want to feel tired and nauseous just in case I get it.

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@saucy Have you considered genetic testing?

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So far not, I have mammograms twice a year and hopefully if I have to get cancer will catch it early? I'm an international flight attendant and put in 14-16 hour days and can't afford to be tired and nauseous. Most people I have talked to that have to take these drugs have side effects. But welcome all input!

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I had genetic testing that's what got me here. Although negative for mutations I had a mutation of unknown significance for breast cancer so oncologist is not sure what it means but because of family history thought I should take the drug. When he talked about side effects he had another drug to counter it. I don't take prescription drugs and really don't want to start down that road.

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@trixie1313

@kathyomaha55 For me, the switching from anastrozole to letrozole and then finally to exemestane has been better. I'm at 1 year down and 9 to go, but I keep telling my husband that I'd love to just quit altogether. I initially had invasive ductal breast cancer and second tumor was neuroendocrine so unfortunately the odds are not good if I go off of the exemestane. I really cannot complain as I have two friends in my support group who have metastatic breast cancer and one just recently died.

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how do I find a support group?

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@pattycincinnati

how do I find a support group?

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@mugs24cancer while not new to Mayo Clinic Connect, I see you've just recently made your first post. What type of breast cancer did you have?

@cindylb always good to be able to share some good news. With COVID-19, teleconsults will increasingly become the norm where suitable. To prepare for your upcoming phone follow-up, you may appreciate reading the tips other members share in this discussion:
– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

@pattycincinnati welcome to Mayo Clinic Connect. You ask "how do I find a support group?" I'd like to answer, You have! Right here on Mayo Clinic Connect. There may be local support groups in your area as well. However, with COVID-19, many of those have either been cancelled for the time being or moved online. You've got a great group here of fellow breast cancer members. What type of breast cancer did you have? What treatments did you have?

Liked by sparklegram

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@pattycincinnati

how do I find a support group?

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@kathyomaha55

I read that 20% of women stop taking an AI inhibitor in the first 2 years. I don't know if they studied the re occurrence rate among those people. I agree that doctors need to support whatever decision we make. I switched to Exemestane from anastrozole, I find the side effect much more tolerable now – I'm hoping to go the full 5 years. Some patients they are keeping them on it for 10 years. I'd like to see the difference in re-occurrence rates in 5 vs. 10 years treatment. I just know the survival rate of metastasized BC is like only 25%.

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I started on Letrozole. Switched after 2years to Exemestane. It is a little kinder to my joints. At times I take a week off, about once a year,to kind of reset. That little break ets me get back to feeling more normal and my doc said is fine to do. I guess it is worth the side effects to increase my likely hood to prevent recurrence. Stage 2b- bi-lateral breast cancer, er +

Liked by trixie1313

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Your case seems almost identical to mine. i had stage zero dcis and had a lumpectomy. The only glitch is I have a chek2 gene. I start radiation Friday, but I am very against taking anything. I also have osteopenia and just cannot see tipping that scale and having more issues. To make matters worse I had thyroid cancer and am on meds for that which took me two years to get straight. They showed me the numbers. It is 87 percent at 5 years with meds and 83 percent without. What I feel they leave out is the quality of life. If mine returns then I am going straight to a bilateral mastectomy. The good thing about cancer centers is they watch you very carefully. Good Luck. They told me I have til July to make up my mind.

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@shelleyc

Your case seems almost identical to mine. i had stage zero dcis and had a lumpectomy. The only glitch is I have a chek2 gene. I start radiation Friday, but I am very against taking anything. I also have osteopenia and just cannot see tipping that scale and having more issues. To make matters worse I had thyroid cancer and am on meds for that which took me two years to get straight. They showed me the numbers. It is 87 percent at 5 years with meds and 83 percent without. What I feel they leave out is the quality of life. If mine returns then I am going straight to a bilateral mastectomy. The good thing about cancer centers is they watch you very carefully. Good Luck. They told me I have til July to make up my mind.

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Yes they do watch you carefully, but did they tell you – if it returns it may NOT come back as breast cancer. Most likely places it returns is Brain, Bones, Lungs, Liver. I heard about a lady who had that same plan (a double mastectomy if it returned), but it came back as brain cancer (breast cancer in the brain) and she died. I had stage 1 IDC and had a lumpectomy with 21 radiation treatments, with no chemo. Yes we must all make our choices as to quality of life but make sure you are completely informed. So that is why I'm taking Exemestane and hope to go at the least the full 5 years. But my bones were good, so that is a factor. I did not have thyroid cancer, but I do take thyroid meds – that is a pain getting them at the correct dosage. Good luck with radiation.

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@tessfair1

So hey…bit of a delicate topic here..lol..does anyone else poop Every. Single. Time. they go pee since being on Anastrozole?

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I had many bouts a day of diarrhea while on Anastrozole. Took a 3 week break and pretty well back to normal. Onc switched me to Exemestane. I will start that this evening.

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@pattycincinnati

I had many bouts a day of diarrhea while on Anastrozole. Took a 3 week break and pretty well back to normal. Onc switched me to Exemestane. I will start that this evening.

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Good luck with the Exemestane, Patty. I had extreme problems with Anastrozole I stayed on it for nearly a year and a half and after trying others, ended up with Tamoxifen. I've been on it since December 2019, and this has been the best for me so far.

Liked by trixie1313

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thank you. I started with the Tamoxifen because my onc wanted me to confer with my bone doc before she switched me to the anastrozole as I have been on Prolia for a couple of years, and my bones are not too good. My onc believes the AI's are more effective in preventing a recurrence in post menopausal women and said the Tamoxifen could cause blood clots and uterine cancer. My endocrinologist said I was good to go on the AI.
I'm afraid to start the Exemestane but will do so tonight and hope for the best.

Liked by trixie1313

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@sparklegram

Good luck with the Exemestane, Patty. I had extreme problems with Anastrozole I stayed on it for nearly a year and a half and after trying others, ended up with Tamoxifen. I've been on it since December 2019, and this has been the best for me so far.

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If all else fails I can go back on the Tamoxifen.

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