We met with Robb's endocrinologist in late March for a long overdue explanation of his cancer diagnosis, treatments, and how this will affect the rest of his life. Robb has Stage One cancer, which is extremely treatable and his life expectancy is not affected by the cancer. His staging is so low and expectations so good because he is so young. His age trumps everything when it comes to looking at his cancer. So that's great.
Robb has multi-focal papillary carcinoma. He had one large tumor on one side of his thyroid. He had two smaller tumors on the other side of the thyroid. It could be that the first tumor spread. But it is more likely that Robb is prone to growing thyroid cancer and he had three separate cancers on his thyroid. The surgeon took out 7 lymph nodes and half of those showed that the cancer had spread to those nodes. That wasn't unexpected and doesn't change the treatment at this time.
After all this initial cancer-killing process is over, he will have to be tested for the rest of his life for recurrence. That will involve blood work and body scans. Recurrence of the cancer is most likely to happen within the first five years, but it can happen anytime. It is a very slow-growing cancer too, which means it may not be caught quickly and it's not really a huge risk if it starts growing back. He will also, obviously, be on thyroid medication for the rest of his life. It will take a few months to find the right balance of medicine. The past few weeks have been difficult for Robb. He has gained some weight, has experienced some depression, and has had to deal with brain fog (leaving keys in the door, forgetting what he's doing, etc.) These are classic sign of hypothyroidism (not having enough thyroid hormones.) The doctor described this as "cold, fat, and slow." So the doctor added some more medicine to his regimen, which will hopefully balance everything out soon.
Radiation will be much less disruptive then the Internet research had led us to believe. We thought an overnight hospital stay was in order, as well as at least a week of isolation. However, the biggest issue will be the low-iodine diet beforehand. The body needs to be starved of iodine so that when the radioactive iodine is administered it goes straight to any remaining thyroid cells in the body. That will kill those thyroid cells and also indicate if the thyroid cells (and cancer) has spread to any other parts of the body.
The radiation has been scheduled for April 17th. He will drink radioactive iodine and then go home. He will spend the 17th, 18th, and 19th at home, isolated. I will be able to see him an hour a day, at arm's length away from each other. There will be some minor activities that need to be done to prevent contamination. (For example, he'll have to wash his clothes and dishes separately. He'll have to flush the toilet twice. He needs to keep the cats away from him.) And after only three days, he'll be able to go back to work. He doesn't even have to go off his thyroid medications before the radiation, which is a fairly new procedure. So, all in all, a process that won't completely suck.
What does suck is the low-iodine diet that he started April 1st. He has to be on this diet through his radiation. Among the banned foods are anything from the sea, anything colored with Red #3 (red, orange, brown food), potato skins, processed or manufactured foods, anything from restaurants, salt, sea salt, foods prepared where an iodine-based sanitizer was used to clean equipment, all dairy, chocolate, baked goods, etc. He can have 5oz. of meat a day. If you start thinking about it, just about everything has salt in it. He's eating a lot of fruit and veggies. He's hoping that during the next two weeks he'll at least lose the weight he gained since the surgery. Robb's already trying to decide what he's going to eat after his diet restrictions are lifted.
We're looking forward to this whole thing being over soon. Robb's first doctor appointment was in November for breathing issues. The surgeries, radiation, medicine changes, diet, etc. have been exhausting. I'm hoping that things will start getting back to normal in May...
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