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Teresa, Volunteer Mentor (@hopeful33250)

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Neuroendocrine Tumors (NETs) | Last Active: Sep 5 7:47am | Replies (383)

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@hollywood817– Wow… you are going through a lot. Have you by chance had genetic testing done for hemochromatosis? In 2013, I landed in the emergency room; actually felt like I was dying. They thought I had a blood clot because the test for that came back positive. Chest CT showed no clot. However, the GI specialist I was sent to b/c of high liver enzymes had the presence of mind to do the genetic test for hemochromatosis. My ferritin, too, was astronomical. I have the two C282Y gene alleles. Had a hysterectomy in 2006 and the ferritin had been climbing since then. Eight weeks of phlebotomy to bring it down. I have taken a calcium with high iron meals and have not had to have phlebotomy since, although I might need one in the next couple of months. I have relaxed my diet too much.

While all of this was going on, they discovered a "hemangioma" on my liver and an adrenal "adenoma," which has been monitored yearly ever since. In 2018, a CT showed a mass in my bladder; was incorrectly diagnosed with high grade bladder cancer. Mass was removed; thank God it wasn't a secreting tumor. Went through induction BCG, became septic from the treatment and was told I couldn't have anymore treatment. I made myself an appointment at John's Hopkins, had my tumor slides and urine sample sent to them. Lo and behold, it was NOT bladder cancer but a paraganglioma. Hot mess!

I have had cystoscopies yearly since then, all negative. CTs yearly as well. I did have a PET after correct diagnosis, which was negative except for something diagnosed as a "probable reactive lymph node." The hemangioma seems to have disappeared after all of these years and the adrenal adenoma is unchanged. That is the extent and end of my surveillance, other than yearly AFP blood test and liver ultrasounds to monitor from the hemochromatosis. I did convince my urologist to do a PET instead of another CT, which is scheduled for 1/24. I am greatly concerned about the amount of radiation I have had.

I am single, without family, and traveling to one of these wonderful out-of-state facilities is just not an option for me. I would love to have a physician here in Gloucester, Virginia (or near) who could monitor with blood tests, etc., and go out of state only if absolutely unavoidable.

I'm counting on a clear PET… for you and me both! We've got this! Be well!

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Replies to "@hollywood817- Wow... you are going through a lot. Have you by chance had genetic testing done..."

Great info and of course I’m sorry for all you’ve been through. I have not had a genetic hemochromatosis test but will do so now. I’ll continue to provide updates. My oncologist didn’t mention surgery to remove masses from liver as an option and I will press him on that issue. My LiverNET has been graded low to moderate which I believe is good news. I’m extremely positive I’ve got this! I reside in Northern VA. and there are wonderful med facilities in this area, More soon and best to all.