Thursday, April 7, 2011

Bumps: part 4

The biopsy came back benign.

You'd think after 6 years of living with metastatic cancer in my body, that I'd have more control over my fears. I have to say, this last scare with the new bumps (check out those pictures, you'd be scared too!) rivaled the 2 week period this past summer when I thought I might have brain metastases. I don't think I've become a hypochondriac just yet, but as I wrote, there a certain biological phenomena with respect to the observations we can make on my disease which are ambiguous at the moment, but their interpretation suggests that my cancer is currently, or certainly will get, worse.

For example, this is a plot a protein produced by thyroid cells (Tg=thyroglobulin), which in my body are all cancerous. The amount is an excellent correlate to the amount or activity (how active/growing) of the cancer cells in my body (zero is 'remission'):

2x increase isn't good. However, no one has any idea why it went up. I was treated last January with radiation treatment #5. Going in, I had a ton of hope that the treatment would cure me, or at least come really close. I envisioned throwing a massive party with all my friends and family invited...kegs of beer, bikes, music, a true novel of modern medicine. I had both good rationale reasons to support this and also more romantic ones: First (rational), I had surgery number #3 after the first year of medical school in 2008. They removed 17 nodes and only 4 or 5 had cancer in them. I was then prepared for a radiation treatment by giving me a synthetic form of thyroid stimulating hormone (TSH), which serves to help my cancer cells (yes, I called them 'my', I've completely accepted these as a part of me!) absorb the radioactive compound that I drink. Anyway, this was all being done at John Hopkins (romantic hope) by probably the best and most caring doctor I've ever encountered (again, romantic hope). He had the idea that radiation treatment number 5 should be a big one (rational), so when I say 'preparing' for radiation treatment number 5, something different was happening than any other treatment I have had. Normally, I go off my thyroid hormone for 3 weeks, and my TSH get's really high. I then consume the therapeutic dose of the radioactive iodine and a few days later, lie down for a scan which shows where in my body that radiation has been absorbed and therefore, where I have cancer. We then wait 6 months to a year and see if cells die. Well, in the summer of 2008, my John Hopkins doc had a different idea: they would give me a shot of synthetic TSH in me bum, then a tiny diagnostic dose of the radioactive iodine and over the following few days see how much me pee glowed and how quickly my body dealt with the radiation. That study, called dosimetry, would allow for a calculation of the highest tolerable dose of radioactive iodine. All of that went fine and they figured out my dose to be very high. However, before they gave it to me, I had a full body scan to see where the radiation had been absorbed. Something amazing, hopeful, and wonderful happened: that scan was completely negative! It looked like those 4 lymph nodes they had removed a few weeks earlier could be the source of my stable tumor marker and that over time, it would significantly decrease. It looked like my lungs were free of disease because they didn't take-up any radiation. So, I did not receive my 5th therapeutic dose of radiation in the summer of 2008.

Over the next year, Cassidy was born, med school was amazing, and I started racing my bike again for the first time in awhile. It was awesome. But over time, it became clear that my tumor marker wasn't budging. Bummer. So, we waited.

Fast-forward to fall of 2009. Tumor marker is still stable but elevated. John Hopkins doc suggests that at some point, I'll need that 5th dose so I could either do it now or wait. After almost 5 years of living with this, I was anxious to get cured, so I choose to get the treatment. In January of 2010, I went back to Hopkins and was dosed with a therapetic level of radioactive iodine:



Then we waited a few days. For the post-treatment scan, I was hopeful that it would show very minimal disease. But that's not what happened. Instead, we saw this:

-extensive disease in both lungs, spread throughout all lung fields.
-multiple areas in my neck
-newly developed vertebral metastasis in T5



Shit. Everything changed. Again, I had been walking around for over a year thinking I was nearly cured and that this treatment would do it. That diagnostic scan came back negative...how could that be? What the fuck was happening to my body and why? I had just won the cat 3 state cyclocross championship! What on earth would happened to me now? Bone disease? Really?

That next summer, when the effects of the treatment would first become observable, I went to MD Anderson. I was scanned from head to toe many different times (although, my insurance wouldn't pay for a PET scan or an MRI of my brain) and everything looked the same as it did the prior winter/spring...not much change. The crazy and further dis-heartening thing was that my tumor marker doubled in the interval between the radiation treatment and the following July. Again, if the treatment worked, it should have decreased, not increased. Moreover, it fucking doubled! Not just went up slightly, but fully doubled. And, we didn't know why. A PET would tell us if the cells in my lungs, neck, and vertebrae were more 'active' and a brain scan would tell us if I had new mets in my brain. But, insurance wouldn't pre-cert those studies, so I had to go back to Missouri and wait for 2 weeks with those possibilities floating around my psyche until I could have the scans at Wash U. Luckily, there were no brain mets and the PET scan was unremarkable. So, we are yet to be able to explain why my Tg doubled.

So, I'm definitely take the results of this last biopsy with a great deal of equanimity. Who knows, it could be good or it could be bad.

1 comment:

Magda said...

Our inexact science of medicine, especiallly as it relates to the care of patients with cancer, at its best. The rollercoaster of emotions is certianly painful, but I am happy to be with you each day, and glad that you are otherwise strong and healthy. Keep on truckin'.