Monday, 2016/04/25 – Second Tumor Board & Third PET
I was amazed at how quickly after I received Dr. Mc’s news I was scheduled for my second tumor board. There is seldom any reason to ask for a second opinion after a tumor board, because it represents the findings of half a dozen extremely competent doctors in various allied specialties, plus the consultation of more experts, such as radiologists and medical physicists. I went to be examined one more time, including the laryngoscope, to discuss my signs and symptoms with various doctors, and hear their diagnosis and recommendations. Charlotte took me down there, and stayed with me throughout, and posed some questions I did not think to ask. After the investigative phase came the deliberations for about an hour, and then they called me into a pleasant office with a computer and comfortable furniture. On the way, we stopped by the exam room where they had scoped me earlier, and showed me the video of the exam. It showed a bulge at the back of my throat (in the nasopharynx region) which indicated some sort of growth or swelling there.
It was just Dr. I and Dr. K this time, and Charlotte and I had a good long session with them.
The news was very upsetting. The specific type and strain of cancer I have is particularly susceptible to photonic radiotherapy, not generally very fast growing, and usually cured by the regimen I underwent last fall. For it to resurface, and to be faster-growing than before, was a rare occurrence. The MRI showed the experts a different picture than was expected. It, along with the PET and CT scans, showed a tumor which had grown quickly outward at first, then slowed a bit and turned inward, but was now heading for some very critical structures. The parotid gland is a pyramid-shaped thing, with the base against the inside of the jaw, and the apex pointing inward, toward the throat. At first, the base grew, and interfered with jaw function, and caused pain and swelling in that region. Then the thing surprised us. It turned inward, growing at the apex, toward my carotid artery, esophagus, and vagus nerve. It had compromised the vagus nerve, which paralyzed my right vocal fold. This was bad news, but there was more. On the PET scans, there was a faint shift in color in a couple of spots separate from the parotid, closer to my pharynx, which indicated increased uptake of the radioactive fluoride sugar they used as contrast, as a marker. I have not obtained the new PET scan, but in this MRI image, we are looking up from my body, toward the top of my head, and the squiggle next to the tumor is part of my right earlobe. Gadolinium was used for contrast.
PET depends on the radioactive decay of Fluorine-18, attached to glucose, to show where sugar is being used most. The brain uses a LOT of sugar, because it cannot burn fats or other carbs. Active muscles do as well, and there are dozens of other things that can present false positives, but cancer is one thing that uses only sugar, and tends to draw the glucose to itself, showing up as hot spots on a PET scan.
Bottom line: my particular type of cancer should have succumbed to the combination of poison and death rays, but two things may have happened to let it live. In trying to spare my parotid gland, the radiation may have missed a cancerous lymph node inside the gland, which did not show up on previous scans. That is the most cogent explanation for the swelling parotid. Another problem, not as sure, but logically surmised, is that some of the cancerous tissue in the high-dose area may have survived the radiation, and it may have included a cancerous stem cell. It is the stem cell which, once cancerous, creates the clones that spread. Not having the third dose of chemo may have facilitated that, but we cannot be sure. If there is still tumor growth in that area, then it is more dangerous than the parotid tumor.
I found a very good slide show that summarizes a tremendous amount of information on cancer, what it is and how it works, at:
What to do: another PET, chemo, immunotherapy, and clinical trials of new drugs. I had the PET scan (with concurrent CT to improve the accuracy) Thursday evening, 2016/04/28, to evaluate the extent and nature of new growth. I will be seeing a medonc (medical oncologist) and we will discuss three possible strategies to deal with this persistent pest. One thing is to do more chemotherapy, and if it shows any effect, add radiation to finish up the job… BUT the margin needed to assure eradication of the tumors would cut into my carotid unless the tumor(s) shrink from the chemo first. Another hopeful avenue is immunotherapy. Instead of killing the immune system as conventional chemo does, it boosts the natural defenses of my body so they can selectively kill the cancer. Strides are being made in immunotherapy, though success may cost Big Pharma billions of lost income from conventional chemo drugs. It has only been successful with a few types of cancer, and the science is still developing, but it is almost surely the best way to cure cancer, when it is effective. There are also other drugs and procedures undergoing testing, that hold a lot of promise, and if I get accepted to a clinical trial of one or more of those, it offers some chance of a cure, or at least an improvement.
Thursday, 2016/04/28 – 3rd PET scan
I wish I didn’t know so much about this stuff. The company that contracts with Kaiser to do their PET scans in Panorama City bought a brand new motorhome and scanner, this time a Siemens instead of GE. It’s faster than the old one, and produces better images too. I held pretty still, and didn’t freak out… much. Had to work to keep my breathing under control, and to stay as still as possible, but the techs said we got a really good scan. Now I can look forward to some information on Monday, but nothing much until then. Just holding on from one day to the next now.
Two doctors (Dr. K, a radonc, and Dr. S, my head/neck surgeon) called me about the PET scan. Bad news both times. The cancer has returned and is more aggressive than before. The mets are not restricted to the parotid. Some are right in the original area where my right tonsil was removed, and the radiation was the strongest. This confirms that surgery and radiation would be pretty useless at present, and chemo and/or immunotherapy are the best hope of turning this thing around. I’ll see the medonc Monday, 2016/05/09. Meanwhile, I am fine-tuning my nutrition with probiotics and anti-oxidants and other things which aid my immune system.