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TX FOR RARE TYPE OF PANCREATIC CANCER

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jefnjeni
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Posted: 12-08-2007 05:33 pm

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In 2004, my husband was diagnosed with a rare form of pancreatic cancer. He had a non-functioning islet cell tumor, which is a neuroendocrine form and not the typical form of pancreatic cancer. He had surgery to remove the tumor, which included removing half his pancreas, his spleen and part of his colon. A year later, the cancer spread to his liver. He had surgery to remove part of his liver. The cancer was gone for two years but has recently recurred again to his liver. He has just one tumor but at this point it is non-resectable. He will be receiving a fairly new radiation treatment called Y-90. We are hopeful this will stop the growth and shrink the tumor so he can have surgery to re-sect it. The y-90 is not a cure, but if it works well, seems to be very positive in making his cancer more of a manageable illness than a terminal one. We are also checking into the possibility of a liver transplant.

I want to make sure my husband get the best care possible. He is young and healthy with no cancer symptoms. Please advise if Huntsman Cancer Institute has any research, clinical trials or other information related to this type of cancer and the treatment that could be available. This is very rare cancer and there is not a lot of information out there.

Brad Bott
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Posted: 12-14-2007 02:14 pm

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Sorry it has taken so long for me to get back to you. I've referred your question(s) to Jason Schwartz, MD. Dr. Schwartz is a hepatobiliary / liver transplant surgeon. Below is his response:

Brad,

This tumor is indeed rare. Y-90, although not examined in this form of liver metastases, may be a good choice to temporize things. This tumor is known to be slow-growing and if the gentleman's primary cancer has been controlled for a numbr of years, transplant may be an option if the tumor is only present in the liver. Unfortunately, patients with this type of tumor are not eligible for exception points for priortization for a liver. The only option in this case is transplantation with a living-donor. There are reports in the literature of using livers for this indication. Essentially, if the patient's disease is otherwise controlled, liver transplantation serves as a means of tumor-debulking. The outcomes are not as good when compared with other types of liver cancers, and in many cases, the tumor does come back. However, in patients who are otherwise healthy with good control of their primary tumor, the transplant, in effect, helps reset the clock. If there are any additional questions, I would be happy to answer them.

Sincerely,

Jason Schwartz, M.D., FACS

Assistant Professor of Transplant Surgery

University of Utah, Department of Surgery

If you and your husband are interested in scheduling an appointment to see Dr. Schwartz, to discuss treatment options, please call Shelley Stoker at (801) 587-4422 or toll free (877) 624-4422.

Thanks,

Brad...

Last edited on 12-14-2007 02:15 pm by Brad Bott

Joyce
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Posted: 12-26-2007 08:25 pm

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Try research Carcinoid Tumors. They are rare tumors sometimes beginning in the Pancreas and other places...often under diagnosed. My husband has Carcinoid that has metasized to the liver. He is getting wonderful care from a doctor specializing in islet tumors and carcinoids in New Orleans. We are in Arkansas. If you want more info, contact me at thedobbshouse@yahoo.om

Thanks

Joyce

Hiway
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Posted: 04-07-2008 09:18 pm

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I have just been diagnosed with a neuroendocrine islet tumor in the pancreas. It is about 5cm long and 2cm in diameter. The pathology report shows cancer. There is no indication that it has spead. I was told by one of the top transplant surgeons in AZ. that surgery was not an option and that radiation and chemo could actually speed up the cancer and that I could live up to 10 years. I am 60 and other that the extreme anxiety and low energy I have no pain symtons. I have a call into Huntsman to get some more information to see if I should schedule an appointment. The plan in AZ by the oncologyst and surgeon is to do nothing at this point. This has been really hard on the family.

Norman

jeffnjeni
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Posted: 07-16-2008 06:14 pm

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Just an update, the Y-90 treatment my husband had in March 2008 has worked wonderfully. At his 3 month post tx CT scan, the tumor was probably 1/5 of the original size and should continue to shrink. We are encouraged by Y-90 and the benefit it has to help manage his cancer. This could be an option for others??

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