Radiation Decisions
Jeff and I have been trying to reconcile the conflicting information we've received from various medical professionals regarding proton therapy. I believe in being your own health advocate, but this is a bit ridiculous. I had to skim medical journals instead of watching Bachelor in Paradise.
Yesterday, Jeff and I had a video call with Dr. Jared Sturgeon at the Texas Center for Proton Therapy in Dallas. My radiologist advised against proton therapy but then immediately changed his mind and set up this call for me. According to Dr. Sturgeon, proton therapy is equal to standard radiation in terms of efficacy but offers reduced toxicity to the heart and lungs because it's more targeted. So for me, that means proton therapy can get a higher dose of treatment to my internal mammary lymph node that was PET-positive back in January. Apparently I should've met with Dr. Sturgeon weeks ago, because he didn't like the idea of delaying my radiation for weeks while we wait for insurance approval. He advised me to finish my standard radiation treatment in Austin and then possibly come to Dallas for a boost to the internal mammary chain. My current radiation plan avoids any damage to my heart and causes only slight damage to my lungs, but it only partially treats those nodes.
After the conference call, the nurse casually offered me some radiation since I was already there, and I said, "Sure, why the hell not?" I went back today for another dose, so now I've completed 4 out of 33. And I'll have to add some special proton rings to my paper chain once I get that sorted. I had been thinking about going to Charleston or Baltimore for a fun weekend away after I finished radiation in October, but now I guess it will be a fun week in Dallas. I googled "top attractions in Dallas" and found pictures of this giant eyeball. Um, cool?
Last night at bedtime, Claire asked, "Is dying real?" "Yes," Jeff told her. "Will I die?" "Yes." "Will Georgie die?" "No, Curious George is a toy." She thought about this for a minute and then said, "I wish me and Julia and Mommy were toys." Me too, Claire. Me too.
Yesterday, Jeff and I had a video call with Dr. Jared Sturgeon at the Texas Center for Proton Therapy in Dallas. My radiologist advised against proton therapy but then immediately changed his mind and set up this call for me. According to Dr. Sturgeon, proton therapy is equal to standard radiation in terms of efficacy but offers reduced toxicity to the heart and lungs because it's more targeted. So for me, that means proton therapy can get a higher dose of treatment to my internal mammary lymph node that was PET-positive back in January. Apparently I should've met with Dr. Sturgeon weeks ago, because he didn't like the idea of delaying my radiation for weeks while we wait for insurance approval. He advised me to finish my standard radiation treatment in Austin and then possibly come to Dallas for a boost to the internal mammary chain. My current radiation plan avoids any damage to my heart and causes only slight damage to my lungs, but it only partially treats those nodes.
After the conference call, the nurse casually offered me some radiation since I was already there, and I said, "Sure, why the hell not?" I went back today for another dose, so now I've completed 4 out of 33. And I'll have to add some special proton rings to my paper chain once I get that sorted. I had been thinking about going to Charleston or Baltimore for a fun weekend away after I finished radiation in October, but now I guess it will be a fun week in Dallas. I googled "top attractions in Dallas" and found pictures of this giant eyeball. Um, cool?
Last night at bedtime, Claire asked, "Is dying real?" "Yes," Jeff told her. "Will I die?" "Yes." "Will Georgie die?" "No, Curious George is a toy." She thought about this for a minute and then said, "I wish me and Julia and Mommy were toys." Me too, Claire. Me too.
Jami refused to make me a guest writer today, then insulted my version of events for having actual details in it, then said I should post it as a comment, like a commoner. So here you go...
ReplyDeleteThe plan is now to "boost" with proton treatment in Dallas *after* finishing the regular course. The original plan was only giving a 50% dose to the internal mammary nodes (which were positive on the original PET scan and are not removed by surgery) because he can't hit them without hitting her heart. At Jami's age, the heart is more important, and there are no conclusive studies proving that dosing the internal mammaries improves outcomes. Our guy didn't mention this because it's obvious, apparently. And yet he said that half of radiologists would have dosed them (and the heart) anyway, so it doesn't sound like it was a slam dunk. It was actually the oncologist who pushed the radiologist to be more aggressive by reconsidering proton. In our minds, the cancer was there, the cancer has been shown to be incompletely removed by chemo by the pathology on the removed nodes, and so cancer is still there. Letting it stay there seems stupid when we're working so hard to get rid of it elsewhere. So the "boost" will be the other 50% of the energy delivered that it needs to kill the cancer, but only to this overlooked area. It's unclear how many days/weeks that will take in Dallas, but could be as long as 3 weeks, or as short as 1 week.
Proton therapy is awesome, our research has shown. For physics reasons that no articles delve into, protons plow through your tissue and then, at a fairly precise point, get bored and just drop all their remaining energy at that depth. Which means there's a big bolus of "radiation" at that depth, a smaller amount of "radiation" in front, and almost nothing behind. Which means you can draw a nice outline around the heart. The studies are still in the works, but early results are good.
The downside of proton therapy is the cost. The machines are like $100mm, so there aren't that many of them. They take 3 stories to house. Insurance may or may not pay for it, but we think we can swing the shortened boost treatment if we have to.
A downside of the new plan (but a strength of proton therapy in general) is the radiation to the heart. Current doctor was giving her heart "none" because he gave up on the internal mammaries. With proton, we're expecting 1-2 grays of energy to the heart, which is less than the 5+ that traditional radiation would give. But then maybe 1-2 grays is enough to cause damage anyway. (The target is 50 grays for the tumor areas.) I saw one study quoting a 15% increase in cardiac events for every gray of radiation, so Jami would then have a 30% increased risk of cardiac problems. In absolute terms, I think that's something we can live with, but it's still a balancing act. Proton just tilts the equation a bit.