Liver Transplant to Treat NETs

Posted by kim1965 @kim1965, Oct 16 7:33pm

Kim is about to complete her 2nd of 4 scheduled PRRT treatments, with scheduled PET scan and CAT scan to review progress before treatment #3. My question to everyone in the NET forum if anyone has had their Cancer Care Team, suggest as an option a Liver Transplant as a option to either potentially remove NET from your body, or help with keeping it to almost minimal level? The Team’s thinking is if after the PRRT treatments are complete, and the PET scan doesn’t show any other NET other than in her liver, that the option to get a liver transplant according to rules and being put on the list, which she is currently being tested and reviewed for might become our next best option to continue battling NET. My concern is that in the almost 2 years I have been following this forum, I don’t remember anyone having this option presented to them. I would love to hear any information if anyone has experienced this option, or have any information about it. Thank you so much!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

I was diagnosed with NETS WITH METASTASIS to my liver. I had a transplant. It was not done to “treat” the NETS but it served the same purpose. It was a complicated situation. 6 years out.

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Thank you so much for responding! Whatever you feel you willing to share around the decision to do it from your medical team. That’s great your doing well 6 years. Are you considered NET free or at a very low stage? Can you make any suggestions if we make this decision for the transplant that would make the process easier? I’m sorry so many questions, but your the only person we have heard from that did a liver transplant.🙏🙏

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@millds

I was diagnosed with NETS WITH METASTASIS to my liver. I had a transplant. It was not done to “treat” the NETS but it served the same purpose. It was a complicated situation. 6 years out.

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Please share.

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@kim1965

Thank you so much for responding! Whatever you feel you willing to share around the decision to do it from your medical team. That’s great your doing well 6 years. Are you considered NET free or at a very low stage? Can you make any suggestions if we make this decision for the transplant that would make the process easier? I’m sorry so many questions, but your the only person we have heard from that did a liver transplant.🙏🙏

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I would be happy to talk to you regarding my experience. This is probably not the best way to chat. If you would like to share your email, we can connect.
Deb

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@millds

I was diagnosed with NETS WITH METASTASIS to my liver. I had a transplant. It was not done to “treat” the NETS but it served the same purpose. It was a complicated situation. 6 years out.

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How old were you when you had the liver transplant? Did you have NETS anywhere else? Are you now cancer free? What hospital? Do you know what the criteria is to be considered for a liver transplant?

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@millds

I would be happy to talk to you regarding my experience. This is probably not the best way to chat. If you would like to share your email, we can connect.
Deb

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Hi @millds, thank you for being so willing to share with @kim1965 by email. It's best to share contact information by using the private message function rather than posting emails. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.

As you can see, other members like @tomrennie and @stevestenberg31 are also seeking members who have experience with NETs and liver transplant. I hope you'll continue to share your story here.

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@stevestenberg31

How old were you when you had the liver transplant? Did you have NETS anywhere else? Are you now cancer free? What hospital? Do you know what the criteria is to be considered for a liver transplant?

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Hi,
Great questions. I was 64. It was not a “choice” that was planned for in advance. Resection surgery for NETS resulted in failure FOR ME of my liver and thus my kidneys. It was a supreme effort chosen in an attempt to save my life. Praise God it worked.
Please know I am forever grateful for my donor and doctors. I have had 6 incredible years, but it is not a cure. It can return at any point. I am monitored very closely, but due to anti rejection meds, I am also more susceptible to other cancers. Research and in depth discussion with Dr. Is very important when starting down this path.
Would I do it again? In my situation with hours to live and the gift of the last six years? Yes. Is it easy? No.
It may limit some treatment options as well.
The criteria can be found on line and is relative to your center. You have to live within a
few hours of the center.
Best of luck !

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@millds

Hi,
Great questions. I was 64. It was not a “choice” that was planned for in advance. Resection surgery for NETS resulted in failure FOR ME of my liver and thus my kidneys. It was a supreme effort chosen in an attempt to save my life. Praise God it worked.
Please know I am forever grateful for my donor and doctors. I have had 6 incredible years, but it is not a cure. It can return at any point. I am monitored very closely, but due to anti rejection meds, I am also more susceptible to other cancers. Research and in depth discussion with Dr. Is very important when starting down this path.
Would I do it again? In my situation with hours to live and the gift of the last six years? Yes. Is it easy? No.
It may limit some treatment options as well.
The criteria can be found on line and is relative to your center. You have to live within a
few hours of the center.
Best of luck !

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TY for sharing. I'm 55 and I think I could be a candidate. My Dr skirts the issue and my medical professional sibling tells me it's a last resort. Your information is helpful. I'll keep you in my thoughts and prayers. 🙏

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Best of luck. Miracles happen. Prayers🙏🏻

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@stevestenberg31

TY for sharing. I'm 55 and I think I could be a candidate. My Dr skirts the issue and my medical professional sibling tells me it's a last resort. Your information is helpful. I'll keep you in my thoughts and prayers. 🙏

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Hi
I recently asked the same question about just getting a liver transplant and my surgeon said that the first course of action (when the primary source is elsewhere) is to start with resection or other means rather than a transplant. He said that a transplant could likely set off a spread. I have so many tumors that about 40% of my liver is to be removed. Two things I learned – we are all different (which is why we feel like an experiment) and, at this time, NETs is with us until they find a cure. Good luck to everyone dealing with this challenging type of cancer.

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