Radiation
Had a consult at the proton center today. It’s affiliated with the local med school, so it started with a visit with the resident. Fun interactions like:
Resident: Your cancer is considered curable - Me: Careful there. They told me that 15 years ago. Resident: *gulp* well yeah, it is pretty rare to come back at this interval Me: Rates between 1 and 13.6% in the literature...
That and we had the discussion about my age. It wasn’t the same as with my oncologist, who says I’ll alway be young bc I’m a few years younger than him. But, we decided not being young was a benefit in this case, bc the late effects of radiation are worse in women younger than 35, and especially under 24.
So anyway, they are going to try to get proton radiation approved through insurance. It’s a crap shoot, but the doctor seems to think it should go, based on what he knows of BCBS. I had the approval guidelines printed out, and we went over them. I also had to sign up for a patient registry, which is listed as a clinical trial. That was also one of the insurance check boxes. So now I’m guaranteed to be a data point in someone’s study. Hopefully in the good outcome group.
The good news is I feel much better about tradition (photo) radiation if the proton thing doesn’t pan out. They confirmed it much further above my heart than I though. It’s also near my thyroid, so that’ll probably blow in a few years. And my esophagus may or may not be impacted. So I may not get my ice cream diet after all. But I also get to add esophageal cancer to my potential late effects. Woo.
But the other option is doing a stem cell transplant as consolidation. Which is much worst short term. A year off work, 2 months in a small hospital room, 100 days confined to the house. Immune system pretty much fucked for good. And that’s not even the physical toil it takes. And the puking! Ive made it through 10 rounds of chemo without ever puking!
Resident: Your cancer is considered curable - Me: Careful there. They told me that 15 years ago. Resident: *gulp* well yeah, it is pretty rare to come back at this interval Me: Rates between 1 and 13.6% in the literature...
That and we had the discussion about my age. It wasn’t the same as with my oncologist, who says I’ll alway be young bc I’m a few years younger than him. But, we decided not being young was a benefit in this case, bc the late effects of radiation are worse in women younger than 35, and especially under 24.
So anyway, they are going to try to get proton radiation approved through insurance. It’s a crap shoot, but the doctor seems to think it should go, based on what he knows of BCBS. I had the approval guidelines printed out, and we went over them. I also had to sign up for a patient registry, which is listed as a clinical trial. That was also one of the insurance check boxes. So now I’m guaranteed to be a data point in someone’s study. Hopefully in the good outcome group.
The good news is I feel much better about tradition (photo) radiation if the proton thing doesn’t pan out. They confirmed it much further above my heart than I though. It’s also near my thyroid, so that’ll probably blow in a few years. And my esophagus may or may not be impacted. So I may not get my ice cream diet after all. But I also get to add esophageal cancer to my potential late effects. Woo.
But the other option is doing a stem cell transplant as consolidation. Which is much worst short term. A year off work, 2 months in a small hospital room, 100 days confined to the house. Immune system pretty much fucked for good. And that’s not even the physical toil it takes. And the puking! Ive made it through 10 rounds of chemo without ever puking!
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