Week 4 and De-escalation

My Sweet Lord

A lot is happening very quickly so I better catch up on the blog.  First the very wonderful delightful news that my tumor showed > 50% regression 2 weeks after treatment had begun based on a PET/CT scan and therefore I had the option to shorten my treatment from 7 weeks (35 radiation treatments) to 5 and a half weeks (27 radiation treatments).  I had this option because as part of my treatment I agreed to enter a clinical trial that was exploring whether shorter treatment was sufficient to maintain efficacy in the HPV positive Stage 1/2 Head and Neck squamous cell carcinoma population. As I had described earlier, the standard 7 weeks treatment duration was optimized for the traditional H&N population that was associated with smoking and was HPV negative. The clinical trial was also investigating several other correlative science endpoints including whether HPV ctDNA was a good biomarker to predict outcome.  Investigators are interested in whether molecular remission of HPV ctDNA could be used to optimize treatment duration.  The investigators are also interested in other genomic variants that may predict subsets of HPV positive H&N cancer.

As was becoming standard, the pathology report of my 2-week post-treatment scan dropped into my health portal with no warning or context.  I read the report and came home depressed because it looked like there was no way I would meet the endpoint for treatment reduction. The report listed the peak SUV values at the 2 week assessment and the peak values had not decreased by 50% relative to the peak values at baseline.  And so I had to accept that I would be enrolled the whole 7 weeks. A few days later the radiation oncologist called me and told me I met the predefined criteria for treatment reduction. I was stunned.  I told her I had read the pathology report and it certainly did not look like I met the criteria. She agreed to meet me the next day and explain it.

The radiation oncologist explained that the measurement they use was one that takes into account the SUV normalized by the volume of the cancer and not just the peak intensity.  Basically, they derive the AUC of the PET uptake by determining the volume by CT and the signal uptake by PET.  And in my case, the volume of the cancer determined by CT and the signal uptake determined by PET generated an AUC that decreased > 50% relative to the baseline value.  Another endpoint they used was the total AUC at baseline and she told me my value was about half the value that serves as a limit to whether they typically see 50% reductions.  So once again, the distribution of detailed medical information without context led me into another cycle of despair followed by hope. 

I realized that modern medicine has been doing this to us for decades. Apologies for this tangent but I can't resist. The same sort of thing happened to us 20 years ago when our son Ben was in utero. An ultrasound performed at Brigham and Women’s hospital in Boston revealed anatomical abnormalities.  The ultrasound tech told us that if we were having this ultrasound in California, she would be legally required to tell us our child was at risk of Down’s syndrome. We left stunned and went home and collapsed on the couch and cried. Because we were just told by a medical profession that our baby was at risk of having Down's syndrome but also because we didn't trust the information we just received and were confused. So in the morning we picked ourselves up and went to the medical libraries and realized there were a lot of books describing anatomical abnormalities revealed by ultrasound that were barely understood and associated with risks of many outcomes including Down’s. The one thing that turned out accurate was that the anatomical abnormalities we observed were more likely to be seen in males. Fortunately, Ben turned into Ben despite his abnormal ultrasound.

Back in Ann Arbor, I asked the radiation oncologist why the report would be given to me without context. She said they have but one process for writing the reports and it was too complicated to change to accommodate the needs of clinical trials.  She said she recognized the problem and is working on improving how they communicate the information.  This sums up the pros/cons of large institutions like UM. You want to be treated at large centers because they have the experience based on large patient volumes.  However, because they have large patient volumes, doctors are always running from one case to the other and lines of communication sometimes get tangled.

It was really, really important that I got de-escalated to 27 radiation treatments instead of 35 radiation treatments because the last couple weeks of treatment was becoming very hard to manage.