Our first meeting with the Radiation Oncologist was last Tuesday, 12th. We checked in, spent some time talking with his nurse, and then we met with the man himself. He started off the conversation with some GREAT news. There was a German study published in 2010 which indicated that radiation amounts as low as 20 gray were as successful as doses of 40 gray (the previous standard) for treatment of Hodgkin’s disease. 20 gray of radiation would only 2 weeks of treatment! Much better than the 4 we had originally been told to expect.

Right off the bat, we were on board. Much of our apprehensions around radiation were based on what we thought was going to be a much higher dose for at least twice as long. So after discussing things with him for a bit, we signed on.

We made an appointment before we left to come back on Thursday to start the process. Before I can start, they need to run a series of tests including additional CT Scans before they can literally “map out” my course of treatment. It’s a two week process where several people look at my images and map out BY HAND precisely where and how (and from what angles) I will be radiated.

That appointment on Thursday was unlike any I’ve had so far. I’ll get into the details of everything that was involved in my next post. But for now, the important part of Thursday’s appointment was the doctor wanted to talk to us when I was done with my test. In my experience so far, when you are there for an appointment, and are not scheduled to meet with the doctor, yet they want to talk with you before you leave, it’s probably not a good thing. This was no exception.

He sat us down and said that he’d been thinking. After we met with him on Tuesday, he went back and took another look at the study which indicated 20 gray was as effective as 40 gray in the treatment of Hodgkin’s. However, after looking closer at the the study and looking at my specific case, he just didn’t feel that 20 gray would be sufficient. That study seemed to focus on early Stage I and Stage II patients (I was probably Stage IV). He now wanted to do 30 gray or 3 weeks.

We’d have to make a choice.

You may not think there is much of a choice to make here. It may seem clear to you already, but for us it just didn’t seem that simple. We were questioning even doing radiation to begin with, but for some reason his initial proposal seemed right to us, but this proposed change made us question.

We hit him with additional inquiries about probability, and we rehashed much of what we had talked about in our first meeting. None of the numbers that I’m going throw out here are exact. He’s a very scientific man, and he was reluctant to even give us numbers at all, but this is sort of run down of fun facts that we were able to pry out him.

• In general, when Hodgkin’s is successfully treated with chemotherapy, there is an approximately 60-70% chance that there WILL NOT be a relapse.
• BUT, additional Radiation treatments after chemo seem to increase that chance to closer to 70-80% of all cases.
• HOWEVER, with radiation comes additional risk of developing other cancers down the road. They call these “Secondary Malignancies”
• BUT, the greatest risk factor of developing a secondary malignancy is the fact that I’ve already had cancer, and that I’ve undergone chemotherapy treatments. These two facts alone mean that I’m at a 15-20% greater risk of getting cancer than the rest of the population.
• HOWEVER, we’re talking about a 5-10% increase here. At 20 gray, I might be at a maybe 20-25% greater risk of a different type of cancer down the road.
• HOWEVER, with 30 gray, it could very well be 25-30%

Once again, I want to stress that these numbers are not exact. They are approximate examples given to us by a reluctant man because we begged. But they help to paint a picture of what we are talking about here. Like most things in life, I’m reminded of the recent XKCD webcomic (the author has also been dealing with some medical issues in his family as well):

30 gray, still isn’t bad in the grand scheme of things. As of last year, they would have used 40. And 10 years ago it would have been over 70. There are many cancers (he used Prostate Cancer as an example) which are still treated with that much radiation and others are treated with even more. So at 30, I SHOULD be count my blessings. =) But I’m not.

Another thing to keep in mind is that 10 years ago I would have been given TWICE the amount of total radiation and it would have been administered to a larger area of the body. The technology has gotten much better since then and now that they can really focus in on a much more precise area of the body. But all of this brings up a point that we keep coming back to: if that’s what they did then, and this is what they do now, what will they do “tomorrow.” Translation: 10 years from NOW will they find that they can get away with 10 gray? If procedures that seem barbaric now, were once the standard, what will we be saying about possibly unnecessary radiation treatments in the future?

We kept rolling these thoughts in our heads over and over. I say in our heads because surprisingly we didn’t really talk about it. Not with each other, at least. I think that deep down, we both knew that we were still going to do it, and that we would accept the doctor’s second proposal and do 3 weeks of radiation (for a total of 30 gray), but for some reason we were stubborn. I think we were convinced that I was a decision we had make, and that doing so gave us some form of power and choice that we never had when I was diagnosed. Even though we both knew that there is no decision to make. You do what you can to beat the devil you know NOW, and you worry about the devil you don’t know later. We seemed to think that we knew better despite the fact that my doctor has been doing this for almost as long as I’ve been alive.

I think we just wanted to pretend that we had a choice.

It wasn’t until after we had caught some friends up to speed at dinner on Friday night and then when we talked to my sister on Sunday morning, that we realized there really wasn’t a decision to make. Or if there was, that we had already made it. Saying it out loud made it pretty clear. We’ve listened to our doctors so far, why would start doing things against medical advice now. In fact, we were always going to do it. Even if  it had been 4 weeks, or 6 weeks, or whatever. If you go back through the blog you’ll see that I’ve been protesting this from the beginning. Stating that I didn’t want to do radiation, and that it would be a decision that Christine and I would have to make after weighing our options. But in the end, chemo was a choice as well I guess. I didn’t HAVE to do it. Technically I chose to do it. There were risks, there are side effects, and there will be consequences for the rest of the my life for having gone through it. But it’s not like I wasn’t ever not going to do it. It’s the same with radiation.

3 weeks. .

… the choice is made. I just hope we’re doing the right thing.