Thanks so much to everyone who sent us questions. It was very helpful. On Friday night, Shana (the attending doc) spent about 30 minutes on the phone with me talking through questions, research studies, hunches, and moral implications. As a side note, I’m extraordinarily impressed by Shana’s ability to make me think she has all the time in the world to answer my every question. I’m sure she doesn’t, and I’m sure she had a time limit, but she gave me not a hint of limitation. She offered to talk to me for as long and as many times as it took to make a decision. That seems very impressive to me.
The bottom line is that we have decided Phenon will do the radiation therapy. By we, I mean all of us, including Phenon. She wanted to be involved in this decision, including wanting to know about all of the long-term side effects. For some things, she has not wanted to be involved in the decision. I’ve been impressed by her ability to determine which details she is willing/able to handle.
So, that was the bottom line. Now for the detail.
As I previously mentioned, our biggest concern was the long-term side effects of the radiation. They include breast cancer (15 times the risk of the general population, which is a lot), higher mortality rates from breast cancer, lung cancer, thyroid cancer, heart disease, and stroke. Shana agreed that these are risks, but also pointed out some details of these studies that I had not attended to. To determine the long-term side effects you have to treat someone, and then follow them for 20 to 30 years. That means that the current data is about people who received the doses and frequencies of radiation that they gave to kids 20 to 30 years ago. The treatment back then involved much higher doses of radiation than they give now. Shana said that there is NO data yet about the long-term side effects of the current doses of radiation. Presumably, the risk is lower than the current data suggests, but we don’t know how much lower. It could reduce the risk just slightly or by a huge amount. We are entirely shooting in the dark on this one, but I do feel a little better knowing that the risk is probably at least a little bit lower.
The research data on the usefulness of radiation studied two groups of kids: Early Responders and Late Responders. Early Responders do not need radiation. Late Responders must have radiation. Phenon isn’t either one. In fact, she’s squarely in the middle. Therefore, there is NO data that says what she should do. So, for all of you who asked what the data is for other kids in her situation, there is NONE. Everyone just has to make a guess. Even though I profoundly hate having to guess when the stakes are this high, I really did feel reassured by Shana saying that whatever decision we made would be reasonable based on the lack of real data. She made it alright to go either direction, which somehow made it a little easier to consider all options more rationally.
PET scans have only been used as a diagnostic tool in Hodgkin’s for the last 2 years or so. Therefore, there is NO data on the relative usefulness of the negative PET in determining whether or not someone needs radiation. Based on her experience, but not on hard data, Shana estimated that there is only a 5% risk that there are still any malignant cells in the mass still remaining in Phenon’s lung. Shana said she would be comfortable with a decision to not do radiation. She feels like a 95% chance of a cure is a good gamble, if we choose to take it.
However, here’s the rub. If we followed Phenon’s idea (wait 6 months, do another PET), if there was any PET activity, radiation would not be enough to kill the cancer. It would be a new, more resistant form of Hodgkins. The treatment for that is a higher dose and longer course of chemo, higher dose radiation, PLUS stem cell transplant. All of these would have significantly greater side effects than the low dose radiation she could get right now (remembering that all of the awful side effects are well-established for the high-dose radiation).
Kids who are given the FULL range of treatment indicated by their status as Early Responders or Late Responders have a 13% chance of having the lymphoma come back. If you add the 5% chance that there are still some malignant cells in Phenon’s mass, that’s about an 18% chance that she would need that longer, more intense, higher side-effect treatment. (Don’t worry, I know that math is a little bit suspect, but since it’s all based on guesses, not science, I decided to not get too hung up on the adding apples to oranges aspect of that.) Thus, giving Phenon radiation now could reduce her risk from a 1 in 5 chance of recurrence to a 1 in 7 chance.
We took the whole weekend to digest the data. I spoke with a long-time family friend, Dan, who is a Hodgkin’s oncologist for adults. His instinct was to do the radiation also. He’s also going to talk to Shana, and send out all of Phenon’s data to his network of friends and colleagues who are pediatric Hodgkin’s specialists for additional opinions, as well as to some radiological oncologists. Dan said his assumption is that all will say the same thing as him (and Shana), but he wanted to see if he could find anyone who would disagree and what argument they would offer that he might not have thought of. Tim’s cousin also sent out Phenon’s information to another family member who is a pediatric nurse at another Children’s hospital, and she argued that a short course of low-dose radiation was worth the risk to try to reduce the chances of needing to do the second occurrence treatment that comes with much worse effects.
Given all of that, we are 98% committed to doing the radiation. (We will only change our minds if we get some compelling arguments from some of the other experts this week.) The short-term side effects are not nearly as bad as chemo. She will likely be fatigued, but not dramatically so. Also, there is the possibility of burns. However, they are usually no worse than a sunburn and are generally treated adequately with salves for sunburn. Payal thinks that Georgetown can accommodate her school schedule, so she should be able to go to school full-time and just go to radiation every afternoon. It will be 14 days of treatment, weekdays only, so nearly three weeks. We think this means she will start at the end of this week and be finished before the big Chamber Choir trip to Dallas at the end of February.
One of my big goals in all of this was to be able to explain our decision very clearly to Phenon later in life. If, God forbid, one of the horrid side effects comes to pass, I want to be able to explain to her, logically and with adequate detail, why we made the decision we did based on the data we have. I feel like we’ve gotten there. All of this may be a guess, but I think it’s as well-educated a guess as we can muster. And that, as they say, is that.