A month ago I went in for some surgery to have an enlarged lymph node removed from my neck. During the procedure a pathologist examined the excised node and determined it had cancerous squamous cells in it. So, the dissection was expanded and the ENT surgeon removed 32 more lymph nodes, all of which were clean. The lymph node was a secondary tumor with an occult primary. Thus begins my journey to find the primary.

Being new to the cancer industry, I have been trying to find a high point above the thicket to get my bearings. Here are a some early observations from down the rabbit hole.

  • The cancer industry is spread over the landscape in many forms, all boasting of individual care and of powerful means of treatment.
  • Cancer treatment seems to be partitioned into three domains- surgery, radiation oncology and “medical” oncology, meaning medicinal treatment. These domains are further subdivided into groupings that specialize in particular body parts or particular modalities of irradiation.
  • An oncology department can consist of as few as a couple of docs and several PA’s or nuclear medicine techs.
  • An oncology department can be rather large at a university hospital with docs serving in the role of professor, researcher, and clinician.
  • If you have a hammer, everything looks like a nail. There seems to be a little of this inclination in medicine. This is understandable. Clinic payroll has to be met and the payment on the CT scanner has to go out.
  • There is no “undo” button for a large radiation dose. The option menu is restricted for previously irradiated tissue.
  • It is important for the pathologist to determine if the squamous cell cancer is of the HPV type or not. The outcomes may be different.
  • “Cure” means 5 years of survival.
  • CT scans are used to position the patient in the irradiation device in order to aid in precise dosing of the desired tissues.
  • CT scans are superimposed over 18F PET scans to correlate metabolic hotspots with the affected anatomy. Expect a lot of CT scans.

Minutes after the PET scan was collected I walked out to the car and switched on my Geiger counter. I was hotter than blazes. Realize that with the penetrating power of 0.511 MeV gammas and 2 gammas with reciprocal trajectories per 18F decay, the GM counter was understating the activity. I watched the decay rate taper off substantially after ~20 hours. The rad tech injected 15.4 millicuries of 18F glucose into my veins. A day later I was at approximately background by the GM counter.

A person with cancer has to consider that they have a disease that they must shop around to the cancer industry. There is no substitute for background information in this arena. If you indicate to the physician in the consult that you have some rudimentary knowledge, they may be more likely to avoid poor analogies and misleading or confusing expectations.

The first doc recommended 68 Gy of radiation to a suspected hotspot in my throat. She also recommended simultaneous chemo (cisplatin) to take advantage of some kind of synergistic effect.

I’m presently working on getting a second opinion on radiation and drugs. We’ll see what happens next.