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Carcinoid Liver Tumors

Prospector
Posts: 6
Joined: Aug 2011

After 5 x-rays, 3 CT scans, 1 petscan, 2 different CT liver biopsys, 1 broncoscopy with biopsys, 2 mole biopsys, & 1 colonoscopy the VA has determined I have a Carcinoid tumor on the liver(found at the last liver biopsy). Over the last 10 months, since the discovery of a thin mole melanoma, with no evidence of any penetration (very thin and a slow growing kind of cancer) first x ray and then a follow up CT scan showed multiple spots on my liver, 2 spots on my lung and enlarged lymph nodes. All biopsys have been returned negative except the last one on the liver which tested as a carcinoid tumor.
The last pathology report stated no trace of melanoma and they could not find any tumor in the intestinal tract.
I have experienced no symptoms of any kind. The VA tells me there is nothing that can be done to treat this. It does not respond well to chemo. I sent my medical records to another oncology hospital and met with them and was told essentially the same thing "It is a slow growing cancer and there is nothing at this time they can do, eventually if the tumors affect one of the organs it will kill me, or depending where it is located they may be able to do surgery & buy a little more time. Go home and wait.
I have contacted Cancer Treatment Centers of America and considering using them. My insurance was approved and they want to schedule an appointment. After reading some of the blogs on this site about CTCA, I am beginning to wonder if this would be a good choice.
I have researched many treatments for carcinoid tumors such as PRRT, SIR-Spheres, Chemoembolization, Pentetreotide (Indium III) and various treatments with Octreotide that neither the VA or the other Oncologist I saw, even mentioned.
I did not intend to write a book, but does anyone here have any experience with carcinoid treatments and have any recommendations?

Begee1940
Posts: 3
Joined: Aug 2011

My husband is living with carcinoid, has had several operations including a liver resection. His first operation was in 2001. My advice to you is not to go home and wait. I believe you must be very agressive with treatment. We go to a group of doctors who are carcinoid specalists and are known to be amoung the finest carcinoid doctors. We would suggest that you call the office of Dr. Eugene Woltering, 200 W. Esplanade Avenue Ste 200, Kenner, LA 70065 phone 504 464-8500.

Even if you only see Dr. Woltering for a second opinion it would be worth your time. If you call his office they will be very helpful. They will tell you everyting that you need to bring with you (reports, etc.)

At the time my husband was diagnosed he was also not having any problems just having a physical as it was retirement time.

Best to you. Please move quickly.

Prospector
Posts: 6
Joined: Aug 2011

Thank you for your reply. Having little knowledge other than what I have been able to read about in the last 2 weeks, and having almost no advise or suggestions from the Dr.'s, I have not been sure of which way to turn. They both told me I was considered stage 4 as it is in my lymph nodes and spots on my liver and one on my lung. The only biopsy that showed positive was the last one on my liver, however on the petscan in July many showed active.
I will certainly take your advise and continue to seek a specialist. Thank you again.

Begee1940
Posts: 3
Joined: Aug 2011

If Dr. Woltering's office does not think that he is the specalist that you need to see (for instance they are not specalists in lung carcinoid)they will tell you and give you a direction to go.

Begee1940
Posts: 3
Joined: Aug 2011

We drive 5-/12 hours every 6 months to see Dr. Woltering. We also see an oncologist in our area who is very willing to work with Dr. Woltering and follow his directions. I just can't stress enough not to drag your feet. There are several specalists across the U.S., just find one of them. God bless you on your quest. If you have time keep us posted.

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