A Blog Post by Val: Between a Rock and a Hard Place

If I have not clearly indicated the difficulties and uncertainties surrounding cancer treatment decisions in past posts, then let me make them as clear as possible now. If I have not made it clear in past posts that uncertainty is feared and hated by humans and “dogs” our existence, then let me be clear about that now. Unfortunately, the broader existential dilemma of uncertainty, disease and dying facing us all is largely hidden to us until we encounter something like a cancer treatment decision that unmasks the dilemma.

In my previous posts, I have discussed, at least to some extent, how far we have come in cancer treatment, but I’ve tried to do this without losing sight of how far we still have to go. And we have a long way to go. As my oncologist said last week, “We don’t have a crystal ball.”  As I wrote in my post last week, a team of cancer professionals struggled to stage my tumor, and there was dissention in the ranks.

Yesterday, I saw the “dissenter”, Dr. Cooke, my radiation oncologist. After several months, two CT scans of my chest and a “conference” of oncologists, radiation is recommended. But, here is the thing: Dr. Cooke strove to make it very clear to me that I will only have “modest gains” from the radiation. When I asked if he would rank those gains on a scale of 1 to 10, he said 3. He also repeated to me three times, that my most serious risk was that of distant occurrence (lungs, liver, bones) and he stated unequivocally, “Radiation will NOT reduce that risk.” Dr. Cooke is a strong believer in “informed consent”.

In a review of radiation side effects, we discussed lymphedema. I have a 7-10% chance of it occurring. How do I compare these two sets of probabilities: my risk of lymphedema with my chance of modest gains with radiation? How does this help me make a rational, realistic decision, i.e., to give informed consent? Dr. Cooke freely admits that statistics are fine but they don’t indicate to WHOM they will apply. If, the “modest gains” were, say 7 in 10, well, that might be a slightly different story.

There are two difficult issues for me. One is the risk of lymphedema, a risk I will come back to later. The other issue is the recommendation to discontinue Herceptin after one year. Herceptin is the treatment that has the best chance to reduce my chances of a distant occurrence. So, I’m offered (local) radiation, which will not decrease this risk, and I will be taken off Herceptin, the drug designed to decrease this risk. These recommendations are based on the staging of my tumor which, to be fair to all the docs, has been difficult. Clearly Cooke does not agree with how my tumor has been staged. Dr. Cooke says I should take this issue up with Dr. Brandes. Oh, so I am to go back and forth between these two medical professionals and, in the end, figure it out myself?

Lymphedema is not particularly pleasant and I have seen many cases of it in people who have attended my yoga classes for cancer patients over the years. It is often mild but I have seen many more extreme cases. It isn’t curable and Cooke admitted that they don’t know very much about it. He mentioned what he called a “fairly reasonable study” on the effects of exercise for lymphedema and said that the study concluded that exercise had no effect one way or the other. He said that he did not think exercise had any positive or negative effects. He called another study that examined the effects of flying on lymphedema “crap”. He said that only one study on this issue has ever been conducted, it was a lousy study and, yet, lymphedema patients are cautioned about flying because of the increased risks supposedly identified in it. Hmmm… I’ll say one thing about Dr. Cooke, he is very straightforward and honest.

Did I mention that I’m left handed and that my tumor was on the left side? That is where the lymphedema would be. Are there any yoga teachers reading this who have anything to offer about practice and lymphedema?

So here I am: Having to give “informed consent” on a crucial health issue when those asking me to make the “informed consent” admit to not really knowing or having “crystal balls”. On the one hand, I think it is terribly unfair, and on the other hand, I think it is the only way the decision can be made. But, in my experience, the doctors could be more helpful. For example, I don’t understand why they, Brandes and Cooke, can’t meet with me together. Perhaps they can. Perhaps I can request such a meeting. Perhaps it is time to call on a CancerCare Patient Advocate.

In the meantime, I’m between a rock and a hard place, squarely facing the uncertainty of the results of my decisions and their impact on the quality and length of my life.