September 12th UPDATE to my original post.
The academic argument has been settled since I wrote the piece below several days back. A CT/PET scan of September 11th shows a metabolically greedy hotspot. That translates to a new cancer has appeared. Will be meeting with doctors on Friday the 13th to battle this and then it is on to the chemo, which I have nicknamed ‘Charlie Cool’. It will be up to Charlie Cool to beat Bad Bart’s ass so that I can wake up one day and take the grandkids to Disney … and since I don’t have any grandkids yet then Charlie Cool is going to need the help of my ever helpful and ever present guardian angels.
It is my week to be a guinea pig.
Met the most enthusiastic senior cancer researcher today. She came in to chat with my wife and I about the different views on where my treatment might be going. Today was the day for me to sign my consent form to begin chemo treatment … yet that will wait another day. It turned into a counseling session instead. Very informative. Very interesting. Bewildering.
She summed up my treatment plan as practicing the art of medical care rather than the science thereof.
The researcher said that my case is getting plenty of discussion among the cancer doctors. And they are involving more doctors to get their opinions, as well.
It seems that the doctors and researchers are uncertain as to what should happen next.
My specific case has three medical ethical challenges:
- Clinically my body is free of cancer. Taking chemo will hurt my body in some way. To take chemo will be to do some harm with a range of possible side effects. Today I asked the researcher what I have asked the other doctors: whether she believed that my cancer was truly gone. She said that the DNA of the cancer indicated metastasis. Multiple metastases is common. General consensus is that there is cancer somewhere in my body and it is only a matter of time before it makes an appearance. Medical “dogma” is however that I should be sent upon my way and that further treatment is unnecessary. “Dogma” was the researcher’s word, not mine … and she used it several times. Appearance of being cancer-free may be an illusion, or it may be real.
- The second ethical challenge is that even if there is cancer, there is no evidence that the chemo that they recommend for me will work. It is NOT that this treatment has given poor results in the past — it is that the doctors are treating me in the blind because there is almost no data or protocol history to judge how this cancer will react to treatment using chemo. There are well under 50 cases of ENT BSCC, and fewer with metastasis.
Note: Taking the chemo will probably cause a mutation in any existing cancer, whether it works or not. Radiation is not currently appropriate because there is no cancer to radiate. If cancer exists microscopically then chemo needs to be a comprehensive first strike. Yet taking chemo now or later will be the equivalent of “burning bridges” (the researcher’s words), because what they have in their arsenal is as good as it gets .. so if an existing cancer mutates, which it should, there are no chemo alternatives for a counterattack.
Option: Only take two of the three recommended kinds of chemo and save the third type for a later counterattack. Using only two kinds would however remove the ‘comprehensive’ attack approach.
- Thirdly, to wait for the cancer to return is not such a good plan either … not when it could return in several places that you want to avoid cancer at all costs (bladder, liver, kidneys … almost anywhere actually). Waiting could itself render the chemo of little value if used then instead of now. So saving the bridges from burning now may mean that the cancer burns them later instead, before symptoms present themselves and the cavalry can render assistance.
I do not mean in any way to imply that the doctors are ethically challenged, only that there are challenges which pose ethical dilemma for medical treatment.
Where is it all going? My choice will be either a partial (maybe full) salvation by preemptively weakening the cancer’s ability to return, or a cup of unpredictable hemlock.
The doctors will go with my choice — they are very much refraining from making any specific recommendations … although they are obviously making recommendations just by assisting me so closely in my adventure via tests and an overwhelming collaborative search for options.
The good news is that I am otherwise very healthy, have a great team of curious, motivated doctors that promise to be there for me every step of the way, and I am in the hierarchy of most likely to do well in any treatment … assuming treatment works, whether now or later.
There is no reality check in this situation per se — I may outlive everyone offering me treatment. I am continually impressed by the quality of my care and the willingness of the doctors to brainstorm what it all means.
Treatment: My consent form will have to wait a week or so later before we get back to it. The docs are giving me tests galore to create a baseline of my body before we do anything. Today I contributed more blood for more tests (but got no cookies for my effort) and on Wednesday I will take another CT/PET scan that can supposedly find cancer down to 5mm in size. Being a good American I have no clue how small that is … except supposedly really, really small … which in this case is a good thing.
Note: My assumption is that they are turning the machine up to its highest setting because previously we were told on several occasions that the standard CT/PET scan was only effective at finding bad stuff at 1cm in size.
Early next week I will do more tests and get a chemo port inserted into my chest and throat.
Then we will all meet again and rediscuss the challenges of what to do next.