Wednesday, February 2, 2011

Should you become an "expert",and if so, how?

Your chief job as cabana boy is to fight for her - support her, yes - but the whole process from initial discovery to diagnosis to treatment is confusing, complicated, not black and white in terms of choices and consequences, and if she is in the midst of trying to cope emotionally who else is going to be the one to help? Most of the hospitals do not have it figured out yet, to make it easy for you. In the business world you can hire system integrators who can assess your situation and then bring you a total solution, without you having to worry about which silo any particular part of the solution came from. Cancer care is still pretty specialized, you have your surgeon, your oncologist, your radiologist, and then if you are in a clinical trial, your clinical research nurse. They have started a person at Swedish Hospital who is supposed to be a single point of contact and help you navigate the system. Bad solution. Because all they are trying to do is figure out how to help you deal with the silos, rather than fixing the problem. We were fortunate to be able to ask, and have our oncologist commit to being our team quarterback. That helps, but I suspect the average person is shuttled from one part of the process to another without an overall perspective on where they are are going and being able to have an integrated view. I shudder to think of the people who are not educated patients able to devote time to working both the system and the range of solutions.

Whether it's breast cancer or melanoma, there really are a number of choices in terms of treatment. I remember sitting in the surgeon's office while he pulled up a computer program that said if you had cancer at this stage and if you undertook these treatments (surgery, chemo, radiation) here was your prognosis. But the oncologist or radiologist wasn't there to discuss those options. It was an all purpose program, designed to optimize probabilities. I'm sure it is helpful. But the cancer patient is not a probability, or located somewhere on a bell curve of possible outcomes.

In my case I felt the need to help support the decision making process, primarily so we could ask the right questions. For example - for her type of cancer is a double mastectomy better than a lumpectomy? By the way, lumpectomy makes it sounds as the surgeon will take a melon scoop and take out this neat contained lump of flesh. It doesn't work that way, it could indeed be a major hunk of flesh and a long scar. It has profound implications on future appearance. So don't trivialize it - it's a lousy name.

So yes, I hit the internet. It's like any search, a lot of sorting the wheat from the chaff, trying to find credible sources, triangulating bits of information. The main cancer sites give good overviews, but keep it so general, it's hard to use that information other than to make sure you are asking the right questions (really so Meagan could ask the right questions). In the end, I had a reasonably clear view of the choices that were mainstream and what was less common. In the evenings we'd discuss these, so that by the next appointment, we could be a team to ask questions of our oncologist. He was quite happy to have us pose them, and when particular points or treatments were raised, was able to address them (by telling us how it was no longer relevant, or worthy of consideration).

It's doubly hard to do this because as you are doing the research you are exposed to all the prognoses and outcomes for the disease. So you can end up getting re-traumatized. So you have to be careful about how much you do this, so as to not get yourself all stressed out. I recall many times closing the computer thinking I do have questions, and I can help her fight for the right treatment, but I am also much more stressed out. It's the price you pay for being a cabana boy.

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