Three months, again, a world famous doctor, and Hodgkin's flashback

When one has finished cancer treatments, one starts in on the follow-up routine, which is generally seeing the doctor every three months for a while. I have just had my smattering of three-month appointments (plus a dentist, plus pre-op for upcoming surgery). When I saw Dr. Skinner, I asked if I should still be seeing someone about the long-term effects of my Hodgkin's treatments, lo those many years ago. It was Hodgkin's follow-ups, after all, that detected the breast cancer, and it remains my Hodgkin's treatments that carry a greater risk for long-term side effects. Dr. Skinner suggested I see Dr. Constine for a comprehensive cancer follow-up. I wasn't sure exactly what that meant, but it sounded smart, so I obediently went along with it.

I saw him yesterday. As it turns out, Dr. Constine is internationally known for his work with and research on survivors of childhood cancers that were treated with radiation. He literally wrote the textbook on the topic. (And he's here, in Rochester! Good idea, God, sending me here for my first call!) Hodgkin's Disease is one of the more common childhood cancers to be treated with radiation, and so much of his work is with Hodgkin's survivors. Score!

When I saw him, we talked a bit about the protocol I was on. I remember sitting in that exam room at UC Davis in 1999, listening to the different options for treatment - either radiation at higher doses with no chemo (formerly the norm), or this newer protocol with lower doses of both chemo and radiation. The advantage to the former was that it had been used for longer and we knew the long term side effects, and it didn't involve chemo, which terrified me because it would make me look and feel like a cancer patient. The cure rate was, if I remember correctly, about 75%. The latter option did involve chemo, but had a 95% cure rate. With lower doses of chemo and radiation, the hope was that the longterm effects would be less. The downside was that it had only been used for about 10 years, so we weren't entirely sure what the longterm effects would be beyond that... and in fact, it was at 13 years that I developed breast cancer, and it is believed that with those lower doses of radiation, it was enough to damage but not destroy my breast tissue, making it more susceptible to breast cancer. On the other hand, my heart and lungs and thyroid and spine, all in the field of radiation as well, are in much better shape than they would have been, so I'm glad about that! I think of my decision to have that latter protocol to be my first real grown-up decision, one that would affect the rest of my life in a way far more profound that I perceived in that moment.

This week, Dr. Constine affirmed that this was a very good protocol, which has had great results. But, it is important to keep track of patients like me, to continue to watch for these potential long term effects. The chemo effects he isn't too concerned about. If you've been reading this blog for a while, you may remember that my fertility is one of things possibly affected by chemo, but a blood test showed that this seems to be fine. Other than that, nothing else has come up due to chemo. But the radiation, we need to watch. So he has ordered for me a chest X-ray, watching my cholesterol levels (heart disease is a risk), a stress echo every 5 years or so (again, heart disease), and a thyroid ultra sound, because young woman are the most likely to develop something there (though he clarified that because I had clear thyroid blood work last year, he isn't worried). And, I should see him once a year, which I'm used to anyway.

He also said definitively something I hadn't heard before: Hodgkin's is not hereditary. He said my same-gender sibling would be at slightly higher risk, as might my children (like, instead of a 1 in 10,000 change, they have a 3 in 10,000 chance), but it is hardly worth mentioning. So that, at least, is some peace of mind for my offspring!

So that's the skinny. In other news, I had my pre-op for my final surgery this morning. Nothing to report on that - it was more or less the same as the other four pre-ops I have had. :)