Gynecological neuroendocrine cancer

Posted by margaret2 @margaret2, Fri, Feb 8 4:22am

I am curious if anyone else has had a gynecological neuroendocrine tumor. I had 2 separate neuroendocrine cancers. One was stage 3 ovarian with involvement in the omentum.
The other was a stage 2 breast cancer.
The information on this is almost impossible to find
Maybe someone else has had experience.

Hello @margaret2

Welcome to the NETs discussion on Connect. While I have had three surgeries for NETs they have all been in the digestive tract. I'm sure that it must be difficult finding information about gynecological NETs.

Are you seeing a NETs specialist?

Liked by Dee

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Hello @margaret2

After doing a little research I did find some information from the National Institute of Health, https://www.ncbi.nlm.nih.gov/pubmed/21621706. Of course it says it is rare, but I hope it may provide you with some more information.

Here is the website from the Carcinoid Foundation https://www.carcinoid.org/ As you can see, there is a list of doctors who specialize in NETs throughout the world. If your current doctor is not on that list I would encourage you to at least consult with one and then follow up with your local oncologist.

Just wondering: Is your breast cancer also a NET?

Liked by Dee

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Hello @margaret2

As other Connect members have not yet responded to your question about gynecological neuroendocrine tumors, I was thinking about you and wondering if you have come up with any plan for treating these.

Could you post an update as you feel comfortable doing so?

Liked by Dee

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@hopeful33250

Hello @margaret2

Welcome to the NETs discussion on Connect. While I have had three surgeries for NETs they have all been in the digestive tract. I'm sure that it must be difficult finding information about gynecological NETs.

Are you seeing a NETs specialist?

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I had ovarian cancer and also stage 3c with omentum removed.
I’m a year and 1/2 out of chemo. My scans are clear, but, I have nausea still a year after. I still have fatigue also. I guess this is called living with cancer.?

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I have since had a recurrence of my breast cancer in the sentinel lymph node. My surgeon thought the chemo was so effective that she couldn't find it. They told me it is now a stage 3. I had surgery to remove the lymph nodes in my left arm. Then, more chemo followed by radiation.
I thought I was doing pretty good until I ended up in the hospital twice while on AC chemo. Now I find myself sad and even tearful at times. The doctor took me off the AC chemo for 3 weeks and now I am on Taxol weekly for 10 weeks. Is it unusual to feel sad about the whole thing?

Liked by Dee

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@margaret2

I appreciate your update and I am sorry to hear of this recurrence of breast cancer. I believe that sadness is perfectly normal for you. The sadness could be a side effect of the chemo or could be a natural reaction to your experiences right now.

Did you ask your doctor if the AC chemo and/or the Taxol might be causing this sadness? If not, that might be a good call to make today. I would also encourage you to find a one-on-one support group for breast cancer survivors. You will probably find that your responses and feelings are not all that different from others experiencing breast cancer. Check with the local American Cancer Society in your locale to find a group.

We also have a group on Connect that deals specifically with living with advanced cancer. Here is the link to those discussions, https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/.

I see that you have already been involved in Connect's discussion on Facing Cancer Recurrence, PTSD and Acknowledging Mental Health. I would encourage you to check in with this group again as well.

Have you or your doctor talked about the possibility of using a medication, such as an anti-depressant, to help deal with your sadness?

Liked by Dee, margaret2

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I'm sorry to hear about your recurrence. I can understand the emotions and tearful times. Talk to your provider. Maybe they could give you ideas to help improve emotions. I know it's difficult. Exercise (even minimal) helps my emotions. I know some doctors prescribe a low dose anti-depressant to help with the flow of emotions as well. No shame in figuring out what works for you! Best

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@margaret2

I have since had a recurrence of my breast cancer in the sentinel lymph node. My surgeon thought the chemo was so effective that she couldn't find it. They told me it is now a stage 3. I had surgery to remove the lymph nodes in my left arm. Then, more chemo followed by radiation.
I thought I was doing pretty good until I ended up in the hospital twice while on AC chemo. Now I find myself sad and even tearful at times. The doctor took me off the AC chemo for 3 weeks and now I am on Taxol weekly for 10 weeks. Is it unusual to feel sad about the whole thing?

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@margaret2, you are not alone in experience profound sadness and depression with the news of recurrence. It is real and you can seek help from your cancer center. I also encourage to talk about here on Connect. You may wish to join this discussion:
– Facing Cancer Recurrence, PTSD & Acknowledging Mental Health https://connect.mayoclinic.org/discussion/facing-cancer-recurrence-ptsd-acknowledging-mental-health/

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@hopeful33250

Hello @margaret2

After doing a little research I did find some information from the National Institute of Health, https://www.ncbi.nlm.nih.gov/pubmed/21621706. Of course it says it is rare, but I hope it may provide you with some more information.

Here is the website from the Carcinoid Foundation https://www.carcinoid.org/ As you can see, there is a list of doctors who specialize in NETs throughout the world. If your current doctor is not on that list I would encourage you to at least consult with one and then follow up with your local oncologist.

Just wondering: Is your breast cancer also a NET?

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Thank you for the information. Unfortunately the closest NET specialist is not close by. My financial situation does not allow a cash visit and boarding, transportation to, etc.

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@margaret2

Thank you for the information. Unfortunately the closest NET specialist is not close by. My financial situation does not allow a cash visit and boarding, transportation to, etc.

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That is understandable, @margaret2.

How are you feeling now? Have you found a way to deal with and/or treat the sadness as you were experiencing? Are you still taking Taxol?

I look forward to hearing from you again. Will you update me on how you are doing?

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@hopeful33250

That is understandable, @margaret2.

How are you feeling now? Have you found a way to deal with and/or treat the sadness as you were experiencing? Are you still taking Taxol?

I look forward to hearing from you again. Will you update me on how you are doing?

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I found out that I was very anemic and I think that was part of the problem causing me to be so sad. I had to skip one dose of Taxol but did have it this week. I am scheduled for a Neupogen shot to try to decrease the chance of anemia. Chemo makes me feel nauseated and generally bad but I do feel better than I was.

Thank you for your response.

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@margaret2

I found out that I was very anemic and I think that was part of the problem causing me to be so sad. I had to skip one dose of Taxol but did have it this week. I am scheduled for a Neupogen shot to try to decrease the chance of anemia. Chemo makes me feel nauseated and generally bad but I do feel better than I was.

Thank you for your response.

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Hello @margaret2

I'm so happy that you posted an update and to hear that you are feeling somewhat better. Even a little good news can be uplifting, can't it?

I was not familiar with Neupogen injections, so I looked up some information. Here is the link, https://www.webmd.com/drugs/2/drug-9370/neupogen-injection/details

Will the doctor be giving you these injections or will you be self-injecting?

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@hopeful33250

Hello @margaret2

I'm so happy that you posted an update and to hear that you are feeling somewhat better. Even a little good news can be uplifting, can't it?

I was not familiar with Neupogen injections, so I looked up some information. Here is the link, https://www.webmd.com/drugs/2/drug-9370/neupogen-injection/details

Will the doctor be giving you these injections or will you be self-injecting?

Jump to this post

I get the Neupogen shots at a clinic in the Cancer center. Treatment and doctor's appointments are all close together.

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