1. < Breast Cancer

Still on Letrozole but do I need it?

Posted by jpnnobx @jpnnobx, Apr 7, 2023

I was diagnosed with Stage IV BC in July 2020. At that time the hormone receptor was 43% positive. After many chemo treatments and my oncologist didn't know what to do (my words, not hers) she put me on Letrozole even though a 2nd opinion Dr said he didn't think it was estrogen positive. Fast forward to March 2023, cancer out of lymphs and liver, cancer in breast was growing so surgeon agreed to unilateral mastectomy. After surgery and biopsy of tumor, I'm now 0% hormone estrogen positive but I'm still on the estrogen blocker?? Why?? I'm thinking about just stopping the Letrozole especially with the side effects of mostly muscle and joint pain. When I ask, I really don't get an answer. I'm still HER2 positive but does that make a difference? Asking in case someone has experienced the same thing. Thanks!

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Apr 7, 2023

What a horrible decision to feel like you have to weigh!
If this were me and it isn’t too far removed from my own story, I would not just quit taking it.
I say this because you would want to upset your Apple cart if it is providing you some stability.
@jpnnobx have you considered a second opinion? Is there a large cancer center or university close where you might get an appointment and get a treatment review.?

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1 reply
Zebra | @californiazebra | Apr 7, 2023

Hello @jpnnobx -- I agree with everything Chris suggested. I have been on Letrozole and Kisqali for 2 years now post recurrent breast cancer chest wall surgery and radiation. Mine is PR+, HER2-, definitely hormone driven. Ki-67 50%. Chemo not recommended because of pre-x neuropathy. He's not sure chemo would be beneficial for my cancer anyway. Had a double mastectomy in 2013. He said we would revisit the treatment plan based on latest data at the two year mark so at my visit later this month. I like the security of being on the meds despite the side effects. I'm wondering if you should also be on a CDK 4/6 inhibitor like Kisqali or Ibrance? I'd love to know what a cancer center or university has to tell you about meds. Also be sure you have a breast oncologist rather than medical (general) oncologist. Breast cancer experience counts. My breast oncologist is part of UCLA so he should be up on the latest data and treatment plans.

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1 reply
jpnnobx | @jpnnobx | Apr 7, 2023
In reply to @auntieoakley "What a horrible decision to feel like you have to weigh! If this were me and..." + (show)
@auntieoakley

What a horrible decision to feel like you have to weigh!
If this were me and it isn’t too far removed from my own story, I would not just quit taking it.
I say this because you would want to upset your Apple cart if it is providing you some stability.
@jpnnobx have you considered a second opinion? Is there a large cancer center or university close where you might get an appointment and get a treatment review.?

Jump to this post

I've thought about stopping because it may be doing more harm than good, but I hate to take a chance on it. My oncologist even told me a year ago that she didn't know if I needed it. Now we know it's no longer hormone positive but I'm still on it. I've heard people say that this drug can cause other cancers?? That's why I'm concerned, I can deal with the joint pains. I've now been on it for almost 2 years. There are no big facilities near me unless I travel. I am certainly going to bring it up again on next appointment.

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1 reply
jpnnobx | @jpnnobx | Apr 7, 2023
In reply to @californiazebra "Hello @jpnnobx -- I agree with everything Chris suggested. I have been on Letrozole and Kisqali..." + (show)
@californiazebra

Hello @jpnnobx -- I agree with everything Chris suggested. I have been on Letrozole and Kisqali for 2 years now post recurrent breast cancer chest wall surgery and radiation. Mine is PR+, HER2-, definitely hormone driven. Ki-67 50%. Chemo not recommended because of pre-x neuropathy. He's not sure chemo would be beneficial for my cancer anyway. Had a double mastectomy in 2013. He said we would revisit the treatment plan based on latest data at the two year mark so at my visit later this month. I like the security of being on the meds despite the side effects. I'm wondering if you should also be on a CDK 4/6 inhibitor like Kisqali or Ibrance? I'd love to know what a cancer center or university has to tell you about meds. Also be sure you have a breast oncologist rather than medical (general) oncologist. Breast cancer experience counts. My breast oncologist is part of UCLA so he should be up on the latest data and treatment plans.

Jump to this post

Thanks. I'll check about the CDK 4/6. I'm not really familiar with it. My oncologist does deal with multiple cancers. My breast surgeon did say to stay on the chemo drug I'm on but we didn't discuss the estrogen blocker. Thanks for advice and prayers to you on your journey. I hope good news for you the end of the month!

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timely | @timely | Apr 8, 2023
In reply to @jpnnobx "I've thought about stopping because it may be doing more harm than good, but I hate..." + (show)
@jpnnobx

I've thought about stopping because it may be doing more harm than good, but I hate to take a chance on it. My oncologist even told me a year ago that she didn't know if I needed it. Now we know it's no longer hormone positive but I'm still on it. I've heard people say that this drug can cause other cancers?? That's why I'm concerned, I can deal with the joint pains. I've now been on it for almost 2 years. There are no big facilities near me unless I travel. I am certainly going to bring it up again on next appointment.

Jump to this post

Some large university sites cancheck your prior records ans status now and can do 2nd opinions online with you. Check into that.

REPLY
jpnnobx | @jpnnobx | Apr 8, 2023

Thanks so much. I'll check into that.

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