Two of the three oncologists plus the tumor board have approved me for Y-90 radiation treatment. The second oncologist did not approve me, I presume for all the concerns
he told my sister and I. I would be concerned if the third oncologist -
the one who will do the actual treatment did not explain why and his massive experience in doing the technique. They are treating both tumors and think the one in the right part
of my liver has "seeded" or made microscopic tumors around it. The Y-90 should also poison the seeds to death. Since the tumor is connected to the portal vein, the second oncologist
was concerned the Y-90 radiation balls could kill that side of the liver
and the other side may not be healthy enough to support life. But,
since they are Y-90ing both tumors (one in each side of my liver) at the
same time. I am a little concerned about that, if it does lower function. Then I remind myself
that my body is mortal, not immortal. I also realize this is not a cure,
but palliative care to give me a longer, more full life. I doubt if it
would be much fuller then my fatigue-controlled life - or minimal. It
does seem like a good option.
First I will have the biopsy on T-12 vertebra so it can receive Y-90 at the same time, if needed. I'll need two days off from work for that biopsy. When the results of that get back, the team will do a trial run. It will take 2-3 hours while they put a small tube in my femoral artery and map the direction to my liver and then discover if there are veins close to the tumors to use. The day they map, they will put CT scan dye or contrast through the tube and into the vein and run CT scans to assure it will go into the tumor area and not throughout the liver and kill what working cells I have remaining; or it won't go to the stomach and kill areas of my stomach causing incurable ulcers or damage my lungs. A week or so after the trial run, I will go back and they will run another tube in my groin up to the pre-mapped spots on my liver and release the glass beads full of radiation. Then I stay overnight because of my low platelets (thrombocytopenia), and go home to possible or probable flu-like symptoms for up to a month. The only thing standing in the way is my family doctor submitting it to my insurance company and them improving it.
I need to vent. I have been very pleased with everything about Orlando Hospitals: nice layout, friendly, customer service, generous with listening and answering questions. I've never felt rushed by doctors or staff. The cancer support area is amazing. But my hip-hip-hooray came to a screeching halt on Friday when I had to visit medical records. It is located 2 blocks from the hospital in a 7 story building. That's a long walk each way for a cancer patient who has fatigue. My family doctor has not received any documents from the three oncologists and he needs their recommendations so he can ask my insurance to cover the Y-90. I saw the oncologist's physician's assistant Friday. She said hospital rules are they can't send them, only medical records can because only they are allowed a "duplicate" stamp. That's why I walked that far; to get copies. They had a waiting room the size of my bathroom that held 4 folding chairs. There were 8 people in line. There was one woman at the window and she was gone most of the time or talking on the phone. The other women in that room were not assisting customers. There was not even a "take a number". I waited about 15 minutes and the lady in the window did not smile or acknowledge customers. I did sneak in to read the letter by her window: It was $6.50 per page plus 7 cents copying fee. I'd seen my nurse looking at the files, and each was about 3 pages long. That would be over $50 for me to pay - and to add insult to injury, they will take up to a month to submit them. The rest of the hospital is so modern, efficient and friendly - this felt like a time warp back to early 1940. They possibly haven't gotten things updated; but that shouldn't be an excuse for lack of efficiency or kindness. I'm waiting for the next time the hospital sends me a customer satisfaction review - I have the anger out, so can give honest but firm feedback on the poor way that department is managed.
