Ending Tamoxifen after 5 years!

Posted by sparklegram @sparklegram, Jan 29, 2023

Joyfully, today is my last day on AI's after 5 years. Has anyone had negative reactions after stopping Tamoxifen?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@windyshores

@jbp I have had a sore hip for three months. I got an x-ray that showed "mild degenerative changes" which do not explain the pain, and the pain is not in a joint. I mainly suffer pain lying down on that side and it wakes me up.

I have done PT for two months with no effect whatsoever. Not exercises, mainly massage and heat.

How did your mets to hip get diagnosed? My cancer doctor just keeps referring me to PCP.

I am seeing my orthopedist and wonder what kind of imagine to request. And whether I need contrast or not (kidneys not great).

So sorry you are dealing with this.

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The orthopedist should have a good idea of what to image if it is a mechanical or bone issue. I would want to get confirmation that it is not metastasized breast cancer. I just read an article in Medscape of a situation just like yours that was metastasized BC. I’m really sorry that this is scary - I don’t want to be the bearer of bad news. But it would be best if it was caught early. Best wishes for the upcoming MD visit - perhaps the orthopedist will diagnose it as something more simple with good outcomes! Keeping you in my prayers!

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@triciaot

The orthopedist should have a good idea of what to image if it is a mechanical or bone issue. I would want to get confirmation that it is not metastasized breast cancer. I just read an article in Medscape of a situation just like yours that was metastasized BC. I’m really sorry that this is scary - I don’t want to be the bearer of bad news. But it would be best if it was caught early. Best wishes for the upcoming MD visit - perhaps the orthopedist will diagnose it as something more simple with good outcomes! Keeping you in my prayers!

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Thanks @triciaot. Both orthopedist and PT do not think it is a joint so not arthritis. PT doesn't know despite three months of massaging. Orthopedist seemed unsure, guessed bursitis and wanted to send me directly to pain management though offered MRI. I will get an MRI next week. He did x-rays of lumbar spine (where I already have fractures) to make sure that area wasn't the source.

ps orthopedist said x-rays are sufficient to detect or rule out cancer in bones, 95% of the time, but anecdotally I seem to read about a lot of cases where that was not true...

I am not feeling scared. I have honestly learned not to feel scared until there is a reason. I am sure you can relate. I hope you are doing well and thanks for responding!

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@windyshores

Thanks @triciaot. Both orthopedist and PT do not think it is a joint so not arthritis. PT doesn't know despite three months of massaging. Orthopedist seemed unsure, guessed bursitis and wanted to send me directly to pain management though offered MRI. I will get an MRI next week. He did x-rays of lumbar spine (where I already have fractures) to make sure that area wasn't the source.

ps orthopedist said x-rays are sufficient to detect or rule out cancer in bones, 95% of the time, but anecdotally I seem to read about a lot of cases where that was not true...

I am not feeling scared. I have honestly learned not to feel scared until there is a reason. I am sure you can relate. I hope you are doing well and thanks for responding!

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I’m glad you’re getting an MRI! That should give them the info they need for a diagnosis.
Yes, I can relate about being scared only if warranted. I don’t know if that comes from having a series of procedures where each one comes with an unknown, perhaps results or maybe just unknown side effects. It just is what it is.
I hope they can find the pain you’re feeling and provide some relief!

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Yay! Go for the JOY!🌸

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@marcia115

Hi bcwarrior that is just the reason I am not taking tamoxifen or any blocker
after radiation I have to many friends that took it for 5 years and it came back, I will get
checked every 6 months. I don't want to feel bad or have hot flashes and etc.

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Hello!
I just found this forum and I know that your comment was made quite some time ago, but I am hoping my reply finds you well. I was wondering if you had DCIS. I also had radiation only but did choose to go on the tamoxifen. I’ll be taking my last dose December 31st of this year. I was just wondering if you had any effects when you stopped the drug. I know that we are all different, however I am reading that many of us that came off of it are having effects that pretty much feel like we did when we were on it. I was wondering if this was the case for you.
Thank you!

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@jennie23b

Hello!
I just found this forum and I know that your comment was made quite some time ago, but I am hoping my reply finds you well. I was wondering if you had DCIS. I also had radiation only but did choose to go on the tamoxifen. I’ll be taking my last dose December 31st of this year. I was just wondering if you had any effects when you stopped the drug. I know that we are all different, however I am reading that many of us that came off of it are having effects that pretty much feel like we did when we were on it. I was wondering if this was the case for you.
Thank you!

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I hope I can be of help. I was diagnosed with DCIS stage O breast cancer. Had a lumpectomy with 5 weeks radiation. Took Tamoxifen for 5 years. No lingering side effects whatsoever. I am now 21 years cancer free.

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@jjdeakin

I hope I can be of help. I was diagnosed with DCIS stage O breast cancer. Had a lumpectomy with 5 weeks radiation. Took Tamoxifen for 5 years. No lingering side effects whatsoever. I am now 21 years cancer free.

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Thank you for your reply. This was very comforting. Same situation here and it is good to know that there may not be any lingering effects.

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@jennie23b

Thank you for your reply. This was very comforting. Same situation here and it is good to know that there may not be any lingering effects.

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So glad this was comforting for you. Best of luck to you.

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