I have read many other Blogs from folks suffering from Carcinoid Tumors that have been unable to be located as mine was. If you have dealt with this problem or know anyone that has, I recommend the Galium 68 scan. This is the only way they were able to locate my tumors. The scan is painless and extremely definitive. Unfortunately, most insurance will not cover it yet and not all Cancer hospitals are equiped for the scan. The cost is approximatly $4300.00 at this time.
I have one more test prior begining the treatment in Switzerland and it is a requirement. This is a bone marrow sample to be sure the tumor has not moved to the bone marrow. Since the PRRT treatment follows the tumor, they do not want it to damage the marrow. If all is OK there then the PRRT will finally be scheduled.
The worst thing so far has been the waiting game. It's been 6 months from the diagnosis to get to this point.
Thank you Larry for this information. I have been trying to find someone to talk to who has the syndrome but tumors have not been found. Also, my symptoms are so bad that I havd had to go on disability. Do you suffer also? Thank you!!
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