Leoprolide (Lupron) shot monthly or removal of ovaries?

Posted by Rom828 @jgallagher04921, May 29, 2023

Anyone here have BC pre- m? I am 43, had double mastectomy. Am being told I have to have a shot in my ovaries every month for 5 years yet I have never heard of this before. I think I would rather have my ovaries removed vs having to endure this apt every month for 5 years...and I could still get preg.
Anyone have similar situation?

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@jgallagher04921

Pre- M. Just got first Lupron shot last week. I have extreme heaviness in one of my arms. Not the arm the shot was administered in, but where lympth nodes were removed. ( not sure if that is relevant?)

Is this joint pain I'm feeling?

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Same heaviness in arm. Lasted about 3 days.

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For those of you who are pre-menopausal and thinking about having your ovaries removed, this message is for you. Here’s my story:

My first breast cancer was found when I was 43 and I had a double mastectomy. No chemo or radiation was needed (clear margins and negative sentinel node biopsy). The doctors recommended Tamoxifen, but I chose not to take it after carefully considering my specific risk factors.

8 years later (last September), cancer was found in my lymph nodes on the same side that the first cancer was found. After 16 rounds of chemo and when it came time for my axillary dissection, I elected to have my ovaries removed.

All of my doctors—both my awesome local doctors and the doctors at the Mayo that I reached out to for a second opinion—said that having ovaries removed was totally OK. They said that if I were 10 years younger, they would NOT have recommended it because of the significantly higher risks to developing dementia and other health issues that are associated with ovary removal pre-menopause. You can find this research with a quick Google search.

Being 51 years old, I’m at the average age for the onset of menopause. So electing to remove my ovaries was a no-brainer. For those of you who are much younger, I encourage you to look at the research. I didn’t find this research when I searched for oophorectomy vs. Tamoxifen. I had to input key words to include dementia (e.g. “oophorectomy, dementia”).

On a side note (and surprising to me) as I started considering an oophorectomy, I was advised to take an aromatase inhibitor as the last step in my treatment plan due to the fact that fat cells contribute to estrogen production. Removing ovaries was not enough to starve any potentially remaining cancer cells of the estrogen they need. But I felt more comfortable with the side effects of the AI vs. potential complications of my specific risks taking Tamoxifen.

Best wishes to you all!

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@monimoa

For those of you who are pre-menopausal and thinking about having your ovaries removed, this message is for you. Here’s my story:

My first breast cancer was found when I was 43 and I had a double mastectomy. No chemo or radiation was needed (clear margins and negative sentinel node biopsy). The doctors recommended Tamoxifen, but I chose not to take it after carefully considering my specific risk factors.

8 years later (last September), cancer was found in my lymph nodes on the same side that the first cancer was found. After 16 rounds of chemo and when it came time for my axillary dissection, I elected to have my ovaries removed.

All of my doctors—both my awesome local doctors and the doctors at the Mayo that I reached out to for a second opinion—said that having ovaries removed was totally OK. They said that if I were 10 years younger, they would NOT have recommended it because of the significantly higher risks to developing dementia and other health issues that are associated with ovary removal pre-menopause. You can find this research with a quick Google search.

Being 51 years old, I’m at the average age for the onset of menopause. So electing to remove my ovaries was a no-brainer. For those of you who are much younger, I encourage you to look at the research. I didn’t find this research when I searched for oophorectomy vs. Tamoxifen. I had to input key words to include dementia (e.g. “oophorectomy, dementia”).

On a side note (and surprising to me) as I started considering an oophorectomy, I was advised to take an aromatase inhibitor as the last step in my treatment plan due to the fact that fat cells contribute to estrogen production. Removing ovaries was not enough to starve any potentially remaining cancer cells of the estrogen they need. But I felt more comfortable with the side effects of the AI vs. potential complications of my specific risks taking Tamoxifen.

Best wishes to you all!

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If you felt comfortable taking Tamoxifen would the drs have been ok w that vs the AI or did they specifically want you to take an AI since you had oophorectomy?

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@jgallagher04921

If you felt comfortable taking Tamoxifen would the drs have been ok w that vs the AI or did they specifically want you to take an AI since you had oophorectomy?

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Good question. I’ll try to respond in two parts.

From what I understand, Tamoxifen is usually prescribed for pre-menopausal women. An AI is generally prescribed for those who are post-menopausal (natural or surgical menopause). I say this knowing one or two post-menopausal women who are taking Tamoxifen. I don’t understand the nuances as to why some women are prescribed some things and others not.

In my case, being around menopausal age but still menstruating up until my second chemo round, my doctors did not indicate that one pathway of an anti-estrogen strategy was better than the other. Tamoxifen was the first thing they brought up. When I shared my concerns around my specific risks taking Tamoxifen, then the possibility of an oophorectomy + AI was offered.

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@cjs123172

Hello,

I have been on Lupron for a year. There is monthly Lupron, but there’s also a shot every three months. My first shot was a monthly one, but once I tolerated it, I went to every three months. It has not been bad. It is very important to have this if you are pre-menopausal and have estrogen sensitive cancer. I wouldn’t believe everything you read online about Lupron. After several months, I was fully adjusted.

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Hi - Do you take anything other than Lupron. I was taking tamoxifen, but the side effects were HORRIBLE, so I just had the shot that last 3 months about 3 weeks ago and am supposed to start armidex but I'm scared. I feel awful from the lupron, so don't want to add anything else too it. I'd be ok with being on just the lupron. I had a very aggressive estrogen + tumor, so want to give myself the best chance possible. It's been a long road with lots of set-backs. They don't tell you want treatment will be like after you get through all that other stuff. Thanks in advance for you reply.

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Yes. I'm also on Armidex, along with Lupron. I have hot flashes, interrupted sleep at times, and some stiffness. But generally, I am fine. I exercise every day, which apparently helps with side effects. After six months, the Armidex side effects generally get better. Your body adjusts, according to my oncologist.

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@monimoa

For those of you who are pre-menopausal and thinking about having your ovaries removed, this message is for you. Here’s my story:

My first breast cancer was found when I was 43 and I had a double mastectomy. No chemo or radiation was needed (clear margins and negative sentinel node biopsy). The doctors recommended Tamoxifen, but I chose not to take it after carefully considering my specific risk factors.

8 years later (last September), cancer was found in my lymph nodes on the same side that the first cancer was found. After 16 rounds of chemo and when it came time for my axillary dissection, I elected to have my ovaries removed.

All of my doctors—both my awesome local doctors and the doctors at the Mayo that I reached out to for a second opinion—said that having ovaries removed was totally OK. They said that if I were 10 years younger, they would NOT have recommended it because of the significantly higher risks to developing dementia and other health issues that are associated with ovary removal pre-menopause. You can find this research with a quick Google search.

Being 51 years old, I’m at the average age for the onset of menopause. So electing to remove my ovaries was a no-brainer. For those of you who are much younger, I encourage you to look at the research. I didn’t find this research when I searched for oophorectomy vs. Tamoxifen. I had to input key words to include dementia (e.g. “oophorectomy, dementia”).

On a side note (and surprising to me) as I started considering an oophorectomy, I was advised to take an aromatase inhibitor as the last step in my treatment plan due to the fact that fat cells contribute to estrogen production. Removing ovaries was not enough to starve any potentially remaining cancer cells of the estrogen they need. But I felt more comfortable with the side effects of the AI vs. potential complications of my specific risks taking Tamoxifen.

Best wishes to you all!

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This is great info and very helpful! I am in a similar situation. I'm 47, premenopausal, and my oncologist strongly prefers AIs to Tamoxifen. I have been getting monthly Zoladex injections to put me in a menopausal state so I can take an AI, but my doc keeps recommending getting my ovaries removed instead of continuing the Zoladex. I had trouble with anastrozole and letrozole causing trigger finger and joint pain, so I switched to Tamoxifen, but that caused unbearable depression and anxiety. Thankfully, the last AI, exemestane, has been great and has not caused the trigger finger or joint pain. I have been on the fence about removing my ovaries vs. continuing Zoladex. I'm really afraid of messing with what is working! I worry that an oophorectomy will cause irreversible side effects. Thank you so much for sharing your experience!

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@abarone389

Hi - Do you take anything other than Lupron. I was taking tamoxifen, but the side effects were HORRIBLE, so I just had the shot that last 3 months about 3 weeks ago and am supposed to start armidex but I'm scared. I feel awful from the lupron, so don't want to add anything else too it. I'd be ok with being on just the lupron. I had a very aggressive estrogen + tumor, so want to give myself the best chance possible. It's been a long road with lots of set-backs. They don't tell you want treatment will be like after you get through all that other stuff. Thanks in advance for you reply.

Jump to this post

I get a monthly injection of Zoladex. It is also available in a 3 month shot, but my oncologist strongly prefers the monthly dose. Maybe talk to your doc and see if you can get a monthly shot of Lupron, or switch to Zoladex. From what I understand, they contain different active drugs, but work in the same way to block the production of estrogen. You may tolerate the Zoladex better. I personally have never had the slightest problem from Zoladex. As far as the Arimidex, it is one of three AIs. I tried two that caused trigger finger and joint pain, but the third, thankfully, has been problem-free! I believe this is not uncommon, and different people tolerate different AIs better (my lucky one is exemestane). I have learned to talk to my doctor about any and everything that's on my mind regarding my treatment, and she is always more than happy to discuss things with me. They don't know what we do or don't know, or worry about, or question. A valuable tip often found in the cancer community is to be your own advocate! (Oh, and also ask if you are a candidate for Verzenio. I am at high risk of recurrence, and my doc really likes this one to help fight recurrence in certain cases. It costs a ridiculous amount of money, but the manufacturer offers a "copay card" that covers the out of pocket cost entirely. It does cause diarrhea and makes me nauseous, but in my mind, it is absolutely worth it. I don't want to look back and wish I had taken an available treatment.

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@sarahmh

I get a monthly injection of Zoladex. It is also available in a 3 month shot, but my oncologist strongly prefers the monthly dose. Maybe talk to your doc and see if you can get a monthly shot of Lupron, or switch to Zoladex. From what I understand, they contain different active drugs, but work in the same way to block the production of estrogen. You may tolerate the Zoladex better. I personally have never had the slightest problem from Zoladex. As far as the Arimidex, it is one of three AIs. I tried two that caused trigger finger and joint pain, but the third, thankfully, has been problem-free! I believe this is not uncommon, and different people tolerate different AIs better (my lucky one is exemestane). I have learned to talk to my doctor about any and everything that's on my mind regarding my treatment, and she is always more than happy to discuss things with me. They don't know what we do or don't know, or worry about, or question. A valuable tip often found in the cancer community is to be your own advocate! (Oh, and also ask if you are a candidate for Verzenio. I am at high risk of recurrence, and my doc really likes this one to help fight recurrence in certain cases. It costs a ridiculous amount of money, but the manufacturer offers a "copay card" that covers the out of pocket cost entirely. It does cause diarrhea and makes me nauseous, but in my mind, it is absolutely worth it. I don't want to look back and wish I had taken an available treatment.

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Thank you so much for your advice, I meet with my doctor next week and will ask her about these alternatives. I do not want to spend another 5-10 years being miserable. The cancer was bad enough! Thank you again! Be well!

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@abarone389

Thank you so much for your advice, I meet with my doctor next week and will ask her about these alternatives. I do not want to spend another 5-10 years being miserable. The cancer was bad enough! Thank you again! Be well!

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I am confident you will find a solution. Keep me posted!

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