Visit with radiologist #1

Today, I had a two hour consultation with my radiologist...

and goodness does my situation keep getting weirder and weirder.

Apparently, my tumor is much rarer than what I suspected. The radiologist (rad.), a Yale grad with 10 years of experience, has never seen a case like mine. According to to the rad., there is no research on my type of tumor. There will most likely be no research. There have been 30 reported cases of people with my precise condition in the last 30 years (in the U.S.).

It turns out that radiation will not affect my ovaries and uterus. My neurosurgeon thought it would, but it won't, so I've put those fears to rest.

Radiation opens another can of worms, however. Radiation (considerably) increases chances of future cancer-- the rad. is especially concerned for my bladder and rectal area. If I do get cancer, I may not be able to have radiation in the future. The longer I live, the higher chances I have of getting cancer. I have 60 + years left to live, so who knows when I would die a cancerous death? Also, there's a chance that the ependymoma will grow back... even with radiation. If the ependy grows back, I will not be able to have radiation.

So my other option is to wait it out. If I wait it out, I would need regular brain and spine MRIs... every 3 months or so for the rest of my life. It may grow back, it may grow back very slowly, or it may not grow back at all. If it grows back, I may need a second surgery... followed by radiation. We're not sure if my neurosurgen cut the blood supply to the tumor. I don't think he did, since the remaning tumor is entwined with my nerve roots.

If the tumor grows back, it will be harder to remove with radiation since the radiologist must attack more cells. If I do radiation right now, there are fewer cells to kill, so it would be easier. It may be more practical to do radiation later. If the tumor grows back in 5 years, technology will be better, so I may have more options.

If I choose to proceed with radiation, I will need to do it in southern California at Loma Linda. Apparently, I need a specific type of beam for the procedure (I need a proton beam as opposed to a photon beam due to particle dispersion properties). No Bay Area hospitals, not even Stanford or UCSF are equipped to do it. Radiation will take five or six weeks if I choose to proceed. I'm planning to meet with someone at Loma Linda within the next two weeks.


The tumor probably won't kill me, but radiation may. I'm not sure if I feel comfortable going through with the radiation, but I'm going to wait until I meet with a couple more radiologists.

So many things have begun to come together-- why I was misdiagnosed, why I had so much trouble in sports and tae kwon do, why I always dragged my feet while I walked. I probably had this tumor for my whole life. It's really a wonder that I can still walk and that I've regained so much strength.

I'm so lucky.