It ain’t over til it’s over…by Val

Yesterday at my visit with Dr. Brandes, the cancer treatment journey took a different turn from what I expected. I knew that the purpose of my meeting with him was to fill me in on the result of the Breast Disease Site Conference to which he brought my particular case for discussion. I knew that one of the issues to be discussed was whether or not it would be reasonable to stop Herceptin treatments after one year. Brandes had also said that Dr. Cook, the radiation oncologist, would have an opportunity to reassess the need for radiation.

The lead up to the Conference, as I understood it, was to recommend on treatment in view of my clear chest CT scans from November and February. In one of my posts, I had expressed surprise, tinged with some dismay, that after the November CT Scan result Brandes had said that I didn’t need radiation. The dismay came from what seemed to me to be such an abrupt shift from his former position, yet without any detail on how such a different decision could be made. I followed up by making an appointment with Dr. Cook and, sure enough, he said that he felt that radiation would give me only side effects, not substantive benefit.

So, I went to my appointment yesterday thinking that the primary topic coming out of the Conference would be the length of time I would be on Herceptin. That was certainly part of it, but the unexpected news was that they also recommended I receive radiation.

Brandes was pretty clear about how and why this recommendation came about. I had not understood the importance of the staging of my disease relative to the treatment protocol. I am quite sure that is because I was never told in a clear, straightforward manner and, also, because I just didn’t know the right questions to ask. This has led to an on-going confusion on my part since my first oncology meeting back in August.

From that initial meeting, to his credit, Brandes said that he did not really know whether I was advanced Stage III or very early Stage IV. Stage III is a local recurrence, while Stage IV is metastasized disease. He said that he thought there was a very good chance of some cancer cells circulating systemically in my body, even though nothing had shown up in my scans or blood work. The result was that he would start out treating me for Stage IV, which meant chemo, Herceptin indefinitely, radiation and anti-estrogens drugs.

But, since my first chest CT scan and blood work in November were so good, the question became could I avoid radiation and keep on only with Herceptin? When my blood work continued to be good and my second chest CT scan in February was clear, the question became should I be treated as Stage III, the protocol for which is a round of radiation, and Herceptin for one year.

The conclusion at the Conference was that I should be treated as a Stage III and, therefore, should receive radiation.

Out of the five radiation oncologists present, only one had a dissenting opinion, even though, ultimately, he said he would go along with the majority. The dissenter was Dr. Cook, my radiation oncologist. I see him next Tuesday at 11am. He is a very good communicator, so I hope my understanding of all this will continue to improve.

For better or for worse, my case illustrates how individual each case of cancer is, how many variables there are, and how treatments, in the end, are still partially based on judgment calls. Informed judgment, yes, but judgment nevertheless.

No, it ain’t over yet, and it won’t be over until it is over.