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 wews @wews

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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Wews: I have not yet shared this with my oncologist doc or PA (I actually have seen my PA more often than my doctor). I'm grateful to dlardin for making us aware of this study. I may mention it at my next visit, but have so many other questions to ask I may not get to it at my next appointment. If my symptoms were more serious now, though, I would definitely make this a priority discussion. Perhaps others will mention if they've discussed this with their oncologists.

I'm keeping this study handy as reference and plan to mention it at some point.

I hope your joint pain improves or at least stays manageable. As for your oncologist saying all AI drugs have the same side effects, that may or may not be true. I know many women on this discussion site have reported that their experience CAN vary with different AIs. Some have even rotated back and forth a bit between two AIs.

Sending positive healing thoughts your way.

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Profile picture for prarysky @prarysky

Wews: I have not yet shared this with my oncologist doc or PA (I actually have seen my PA more often than my doctor). I'm grateful to dlardin for making us aware of this study. I may mention it at my next visit, but have so many other questions to ask I may not get to it at my next appointment. If my symptoms were more serious now, though, I would definitely make this a priority discussion. Perhaps others will mention if they've discussed this with their oncologists.

I'm keeping this study handy as reference and plan to mention it at some point.

I hope your joint pain improves or at least stays manageable. As for your oncologist saying all AI drugs have the same side effects, that may or may not be true. I know many women on this discussion site have reported that their experience CAN vary with different AIs. Some have even rotated back and forth a bit between two AIs.

Sending positive healing thoughts your way.

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Thanks so much for your insight and thoughts. I am praying the symptoms subside. The hair loss and joint paint in particular is troubling. I am trying to stay positive. I have 4 1/2 more years to be on this medication and it would be great if I can do it without suffering side effects the whole time. I had no idea that taking an AI would be so challenging. I know I am blessed not having to have chemo but I guess no breast cancer treatment is without issues. Sending positive thoughts your way too.

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Profile picture for ruffianfan55 @ruffianfan55

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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You will know more after the bone scan. It's not usually given before completion of surgery and radiation. I am an exception, since I was already on it to reduce the size of the tumor prior to lumpectomy. Sometimes chemo is given prior to being on AIs, so my guess is that they are waiting for the bone scan. Our treatment team has a patient portal where I can go and ask questions between visits. My suggestion is that you ask them. It's a valid question.

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Profile picture for wews @wews

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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I’ve never heard or read that the side effects are the same for all four AIS. A good friend began on letrozole, had a lot of join pain after 8 months and was switched to anastrozole. So far, so good. They are all different. At least that’s my understanding. Try another one.

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Profile picture for wews @wews

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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I am the same age as you and have been on Letrozole since last November, after my BC metastasized and is in my bones and lymph system. I did not have any problems from it until recent months. Definite joint pain, trigger thumb, stomach issues, mild nausea, lack of appetite, lack of motivation, general malaise and hair falls out quite a bit. I was going to switch to a different AI, but changed my mind. The astrozole was more expensive and I agree, the different AIs are pretty much the same and I guess I preferred to stick with what I was familiar with, rather than trying something else. I would be very surprised if your symptoms subsided, based on how I feel. But, maybe your symptoms will subside! Yes, coping with the side effects is not much fun. Quality of life and all that…best of luck to you!

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Profile picture for penny21 @penny21

I am the same age as you and have been on Letrozole since last November, after my BC metastasized and is in my bones and lymph system. I did not have any problems from it until recent months. Definite joint pain, trigger thumb, stomach issues, mild nausea, lack of appetite, lack of motivation, general malaise and hair falls out quite a bit. I was going to switch to a different AI, but changed my mind. The astrozole was more expensive and I agree, the different AIs are pretty much the same and I guess I preferred to stick with what I was familiar with, rather than trying something else. I would be very surprised if your symptoms subsided, based on how I feel. But, maybe your symptoms will subside! Yes, coping with the side effects is not much fun. Quality of life and all that…best of luck to you!

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Thanks so much for your insight. I am finding stretching with yoga and exercising to help. But stiffness when I get up from sleeping and sitting is hard. My hair is getting thinner and I am going to speak with my cardiologist about taking Minoxidil since my oncologist suggested it for my hair. I hear that Molloxicam is supposed to help with joint pain but I am not sure I can be on it because of blood thinners. Have you tried either of these treatments for your sypmtoms? I also have a lack of appetite and some stomach issues but I take it at night to avoid feeling that. I also have hot flashes once in a while. My oncologist said this drug is the strongest one and invasive lobular cancer is harder to respond to chemo so I feel like I should try to stick with this for the 5 years to reduce my chances of a late reoccurrence which is the concern.

I read the study that was shared by someone on this site which showed that taking letrozole every other day resulted in the same degree of blocking estrogen in postmenopausal women so I am going to discuss this with my family doctor and my oncologist. I am sorry for your cancer having metastasized. I wish you the best and I hope that both our bodies can adapt to and jump over the hurdles of these side effects.

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I declined AI after lumpectomy, accepted radiation, but had local recurrence 2.5 yrs later.
Wish I had ignored all the dire reports of side effects since have been taking AI since the recurrence and a mastectomy for close to 3 yrs now with no noticeable effects. Will never know if I could have avoided losing my left breast....

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Hi! I’m 77,and starting Anastrozole just tonight. I opted for AI after surgery for Stage 1 ILC with clear margins because of high BMI and fairly high platelet count which made me afraid of low tam therapy. Here’s hoping for minimal side effects.Dr. also recommended tart cherry juice to help with body aches and pains.3 weeks of radiation starts in Sept.All this is new and a bit lonely and overwhelming to me!

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Profile picture for timely @timely

As I get concerned about various issues, I am worried that a side effect of Exemestane is that it puts a permanent block on metabolizing any estrogen.

I think that if I have an allergic reaction to Exemestane in any way, that allergic reaction will be permanent because of permanent estrogen blockage.

I have had allergic reactions to most meds. given me in the past 3 years….

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Your body produces aromatase everyday so we have to continue taking exemestane to block newly produced aromatase. Once you stop exemestane your body will eventually begin produce estrogen from new aromatase. I’m not quite sure what happens to the blocked aromatase. I read somewhere that taking it 3 times a week is non inferior to taking every day and side effects are less severe. My cancer is almost 100% er+ and I didn’t have chemo, so AIs are my best chance to prevent recurrence. Give it a try. You can always stop it if the side effects are too much.

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Profile picture for mimig77 @mimig77

Hi! I’m 77,and starting Anastrozole just tonight. I opted for AI after surgery for Stage 1 ILC with clear margins because of high BMI and fairly high platelet count which made me afraid of low tam therapy. Here’s hoping for minimal side effects.Dr. also recommended tart cherry juice to help with body aches and pains.3 weeks of radiation starts in Sept.All this is new and a bit lonely and overwhelming to me!

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I know it isn’t a club to which you want to belong, but we’re glad you have found a place where others are going through similar situations with breast cancer. I am very grateful I finally found this place to interact with other folks in the same boat or, at least a near by boat! I am 70 and feel lonely, too because, until I found this Mayo connect, I had no one to talk to about this stuff. Thank you for sharing about the tart cherry juice! I wish for you good results and minimal side effects! ❤️😊

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