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.
Lamentations on Chemistry 
Is that 68 J/kg all at once, or spaced out over a few weeks?
It is 1.8 to 2 Gy or J/kg per dose.
Best wishes for good news and a speedy recovery.
Thanks. I have to keep laughing.
I wish you all the best for a speedy recovery. What brand of Geiger counter do you have by the way? I am looking for a cheap one.
A Ludlum Model 3. Thanks for the good wishes.
Get well soon Gaussling!
As serious as this post is, the image of you rushing to run the Geiger counter over yourself after the PET scan made me smile.
Best wishes Gaussling.
Thank you Brandon. I appreciate it. It is amazing how this takes one’s imagination to frightful places.
Stay strong, Gaussling. I had a melanoma on my jawline 8 years ago and that was nerve-wracking enough with just surgical treatment. Don’t be afraid to push your ENT for names to try for a second opinions. Oncologists can be very gung ho, but thankfully, it tends to be when they think a case is very winnable. Ping me if there’s anything I can do.
Good advice. My ENT seemed shocked that I’d seek an opinion at the university medical center.
Good luck. I am another cancer surviving chemist. I’m ten and a half years in remission from Hodgkin’s Lymphoma. I’ve had radiation, chemotherapy and a stem cell transplant, so feel free to ask away if you have any questions.
Try to get a second opinion from a doctor who sees lots of cases like yours – they tend to have more options available and a better overview of what to do. If you can, go to a centre with expertise with your disease, and if you are youngish, with treating younger adults.
Also try message boards and online communities. My cancer has some really good ones with some really knowledgeable people (sadly those who tend to have been fighting for a long time) who can suggest doctors, and give advice or suggestions on questions you need to ask your doctor before committing to a treatment plan (plus tips on reducing impact of the side effects).
Thanks for the advice. My rad onc specializes in breast cancer. I’d prefer to find a head and neck specialist.
Stay strong my friend! You can always make your way out to the Big Apple, I may happen to know a few people in the Cancer Business that could give you a second opinion.
Thanks man. My best to the family.
Ahakoa he uaua, kia kaha, kia toa, kia manawanui (As they say back home).
Best wishes
I wish I could reply in kind. Thanks for the good wishes.
Gaussling,
When I checked in on your blog I was momentarily cheered to see a new entry. That faded quickly. I too wish you good news and a full recovery.
GJ, thanks for the good wishes. I appreciate it.
I hope that you get well and that they find your primary and kill it.
Thanks Hap. This is very much a mind game.
Best wishes, Gaussling!
I second the recommendation of finding online communities dedicated to discussion of the disease. They can be deep wells of very useful information.
This is such good advice. It is very easy to get overwhelmed by all of the information out there. It is good to hear the heart-cut fraction from those who have been through this previously.
Will be praying for you, my friend. Thank you for sharing this difficult news.
Thanks Morris. I appreciate the kind thoughts of all of the good folks out there.
Stay strong! I have two close family friends of mine who have suffered from cancer. One has been in remission for about 2 years. The other is in chemo right now. I wish you the best–please keep us posted. We’ll all be praying for you!