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Carcinoid cancer in intestine or NETs (Neuroendocrine Tumors)
Neuroendocrine Tumors (NETs) | Last Active: Mar 16, 2019 | Replies (19)Comment receiving replies
Hello @carcinoid and let me add my welcome to that of Colleens. I am sorry to hear of the extensive surgery your husband had and for the time he spent on life support. This was certainly a very traumatic experience for you both. It sounds like you are now facing an uncertain future because of the liver tumors.
I have personally had three surgeries for NETs and I know of many people who have NETs in the liver.
I would also like to direct you to the Carcinoid Cancer Foundation. Here is the link to their website, https://www.carcinoid.org/.
On that link you will also see treatments available to liver tumors, https://www.carcinoid.org/for-patients/treatment/treatment-options/. As you can see, liver embolization is also a possibility. Are you aware of PRRT treatment for metastasized NETs? It was approved by the FDA last year and has been used to treat this type of tumor.
I certainly encourage you to seek out a NET Specialist. On the carcinoid organization website you can find doctors in your area who are specifically trained to treat NETs. Please seek them out for an initial consultation. A general oncologist is usually not aware of the complexity of NETs treatment.
I wish you and your husband well, as you seek out the best treatment possible. Will you post again?
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Yes, I have been informed about PRRT, our Cancer Center in Allentown, PA is currently working on getting rooms ready for this treatment. Due to the extensive illness he had with 100 days in hospital ; mostly ICU, then rehab in the same building although separate from the hospital itself, he has renal failure at 28% currently. I don't know if he will be a candidate for the PRRT. I also wonder why it was administered in Europe for many years before the AMA approved it for the US, and they have stopped administering it in Europe now? Our Oncologist is not a specialist in NET but is connected with Salone Kettering in NYC and has a special interest in Carcinoid so we feel we are in good hands. We went to a Dr. Metz for a second opinion in Philadelphia and left there feeling like a lab rat. The doctor barely looked at my husband, had his head in the computer all the time we were there asking him questions, like he was ready to use his information for his next publication.