Friday, July 29, 2011


It's starting. We are at T-3 days for the brain MRI and T-5 days for the results discussion with Kaplan and what to do next (some of which is dependent on if there is brain tumor activity and some of which is independent). It's pretty difficult to explain to Meagan the "what-ifs" because she has a hard time following it and because it gets scary and goes down the dark road she'd rather not visit. So it's a delicate balance to respond to her questions with enough information to be useful but not tip her over the emotional edge.

For example, yesterday she asked, "if they find a brain tumor they will just zap it, right?". Well, the answer is not quite that simple:

1. If there are 1-3 isolated and contained tumors  - that's probably correct - they can use the Cyberknife radiation treatment.
2. But it depends on location  - if it's locally recurrent (i.e., where the tumors were initially) - and they've come back even though that area was previously irradiated, it means they are probably radiation resistant (something melanoma is notorious for) and it may not do any good and may cause more brain function loss to do the treatment.
3. If they are in different locations, it still may be possible, but if they are in critical brain function areas, the resulting radiation treatment impact (as they go after margin, not just the tumor) could be highly detrimental to brain function. Which impacts remaining quality of life.
4. If there are more than 3-4 tumors, they probably wouldn't do Cyberknife. Then the only alternative is whole brain radiation. That has not proven very effective, and there is no clear advantage to doing that to gain life extension over just using steroids (because if this is the case, it's all about managing quality of life) and it can cause a lot of negative side effects (like dementia).
5. Even if the scans are clean it doesn't really mean anything in terms of the disease outcome in the brain other than we've gained a few months (which is still quite valuable!!). It is still there, it never gets wiped out completely, it's just laying low. Melanoma has a propensity to be capricious and sudden; you can be clean as a whistle one month and then one month later have ten tumors.

So we are walking a fine line, again. She wants to know a little, but not go too far. Kaplan will have to be the one that lays out some of this based on the results. And she may not want to play the "what-if" game - but just deal with the situation as it becomes concrete. So if over the next 3-5 days she asks more questions, I will probably just defer, and find ways to comfort her over the scanxiety without addressing the potential outcomes.

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