A Special Message

August 2, 2006 - I got a call completely out of the blue today from Dr. Au. He just wanted to wish me good luck with my radiation treatments and asked me to stop by once in a while to stay in touch.

A bit of explanation is in order given my last post.

On Monday, 7/31/06, I met with Dr. Glenn Tonnesen whom I was referred to by Dr. Califano. He is a well reknowned Radiation Oncologist in Fairfax and as I mentioned earlier, Dr. Au actually suggested that I keep my appointment with him to see what he had to say about a new treatment that his center is using called Tomotherapy. I went into the appointment thinking that I was just going to learn about this new technology but that it would not sway me from decision to use Dr. Au given how comfortable I was made to feel during my visit with him.

Dr. Tonnesen is warm, personable and honest. He explained in detail the side effects that I can expect from the radiation treatments both now and in the future. He made an offhanded comment that I'm sure meant nothing to him but everything to me. As he described the potential lasting effects of the treatment, he said "you'll look back and remember me when you're an old man!" His point, jokingly, was that I would curse him when I'm older but for me it was validation that I will, in fact, live to be an old man. We also talked about my options for adjuvant chemotherapy treatment. Dr. Tonnesen is the first person to tell me that a traditional chemo drug called cisplatin is the current standard of care and something that I should strongly consider. To date, every doctor that I've spoken with has focused on a new drug called Erbitux which was just recently approved by the FDA as a treatment for head and neck cancers. It is not a cytotoxic chemo drug but instead is considered to be an immunotherapy drug that attacks cancer cells in a different way. While it has certain side effects, it does not cause the traditional chemo side effects of nausea and hair loss. Although the potential for this new drug is great and early studies show that it is quite effective in combination with radiation therapy, the risk is that there is not two years worth of data yet to prove its effectiveness over the long term like there is with cisplatin. Having said all that, Dr. Tonnesen then told me (quite uncharateristically for a doctor I might add) that if he were in my shoes, he would choose Erbitux. I will be meeting with a Medical Oncologist this week to discuss these options.

I left the appointment sufficiently convinced of two things; 1. That the Tomotherapy technology was definitely worth strong consideration despite the fact that it would mean travelling much further for my daily treatments, and 2. That I could easily work with Dr. Tonnesen. I now had a big decision to make and I needed some help in making it.

The next day, I emailed my friend Eden who works at Johns Hopkins to ask some of her doctor friends if they have any recommendations. She in turn forwarded my question to several radiation oncologists there as well as a head and neck specialist. Some knew Dr. Tonnesen and recommended him based on that but it was clear that they felt the additional daily drive was worth it for the Tomotherapy machine. Here is the difference as I understand it: Dr. Au uses what is still a relatively new technology in its own right called IMRT (Intensity-Modulated Radiotherapy) which is an iteration of an older technology called 3-Dimensional Conformal Radiotherapy or 3DCRT. The primary benefit of IMRT is that it allows for greater precision in targeting a tumor by shaping the profile of the radiation beam and varying the intensity of the beam over a given area. This is particularly helpful for concave tumor surfaces or tumors that are wrapped around vital organs. The drawback is that it is very labor and computing resource intensive and thus, is very costly. Tomotherapy is a specialized form of IMRT that adds greater accuracy to that precision by incorporating a CT scan before every treatment. Tumors move. Patients aren't always positioned in exactly the same way. Even minute changes in position can lead to unintended damage to healthy tissue which Tomotherapy seeks to avoid. Not surprisingly, I too seek to avoid damaging my healthy tissue. A very good description of the origin and benefits of Tomotherapy can be found here. (As an aside, I'm glad I didn't read this article before choosing Tomotherapy because it focuses on St. Agnes Hospital in Baltimore. I've had very bad experiences there. Among other things, my mother was treated for lung cancer there and I do not believe she received very good care. My step-father calls it a place where people go to die.)

So, after praying on this decision, I finally came to the conclusion that the Tomotherapy was the right choice, despite the fact that I would not be working with Dr. Au and that it was not nearly as convenient in terms of location. My insurance may not cover it either. But the stakes don't get any higher so this is no time to quibble over money or temporary inconvenience. I want the best technology available. I informed Dr. Au's office of my choice.

When he called me, I explained to him my reasons and expressed my gratitude that he would take the time to contact me and wish me well. I also told him that the decision was not easy and that him calling me just reinforced that. Dr. Kin-Sing Au is a caregiver of the highest order and I am sorry that he is not going to be administering my treatments. After we hung up, he called back a couple minutes later and told me that I made the right choice and that the Tomotherapy machine was a better technology. He said that if I were his brother-in-law, he would probably refer me to Dr. Tonnesen as well. I was stunned and quite literally didn't know what to say.

I now have one major decision left which I am agonizing over... chemotherapy or immunotherapy.