A Patient Perspective on Cancer Treatment

I was diagnosed with Stage IV HPV+Squamous Throat and tongue cancer early May, 2016 and the tumor board recommended Chemo + Radiation.  I am a lifelong advanced level avocational symphonic choir singer with important concerts imminent and elected to forgo radiation as damage to the vocal instrument was certain and rehab to singing level was unlikely.

 I have lived a "healthy lifestyle" of the non-weirdo variety all my life, conventional (little fast food few sodas) diet, lots of exercise, plenty of sleep, etc. But living long enough puts you in the high cancer risk category no matter how you live as I have found out. Cancer is nature's way of telling you it is time to let the kids take over. Modern medicine is pretty good at dealing with cancer, and aside from cosmetic horrors most people who are otherwise healthy generally can deal with it easily. The cancer scare tactics are medical and alt fact marketing that can be ignored.   But most important I didn't buy into the belief unfortunately promoted by the medical profession that Cancer is a terrible monster that must be eradicated from the patient at whatever cost.

  IT.  IS. NOT.

 Cancer like heart disease, strokes, and many other infirmities of age, are things that need medical attention and may affect life style, but if they are not fatal are issues that must be dealt with in the context of doing things that are important to the patient, even if lifestyle choices may affect the treatment and even the outcome of the disease.

 These diseases of age are analogous to joint damage, broken bones even spinal injuries and concussions.  They may kill you outright, we all die someday, but if not life style changes to fix the problem should not be the primary form of treatment.  A friend of mine was paraplegic as a result of a ski accident on KT-22.  Instead of gently learning to use a wheelchair to avoid further damage to his injury he was organizing wheelie races in the rehab center.  Skiing might have killed him but it wasn't about to change his life style dead legs notwithstanding.

 The tumor board was not happy with my decision to skip radiation, but accepted it and  suggested a very aggressive and dangerous Perfusion Chemo as an alternative to standard Chemo and Radiation with the warning that it was potentially life threatening but would not damage the vocal instrument.  For me the risk/benefit equation of certain loss of singing ability vs a dangerous regimen of Chemo made the Chemo the best choice.  As a singer friend noted priorities are 1. Don't die if possible. 2. Keep singing, 3. Manage the cancer.  I was in excellent health, with an athlete's level of fitness, and decided I could deal with the aggressive Chemo and live through it to deal with any remaining cancer at a later date if necessary.  The tumor board assumed that later meant radiation and more Chemo. I did not.  See 2 above. One thing cancer treatment does is that it forces management of priorities to accommodate the extra sleep, and immune system degradation associated with any cancer treatment regimen.

 Two important events I chose to accommodate were coordinating a convention blood drive early in the treatment, and singing a concert at the end of the treatment.  The blood drive was relatively easy. An aggressive medical face mask to deal with the crowd and instead of commuting I stayed at the convention hotel to provide frequent rest breaks, and longer sleep at night.  The concert preparation was more difficult as the extra evening rehearsals could not be missed, nor could the vocal exercises be ignored as the Chemo affected the vocal instrument, and had to be compensated for. I had to assume the chorus was basically healthy as a face mask could not be worn while singing.   Non-essential time sucks like Facebook and Email got minimal attention, and other social activities were eliminated as possible.  But I did sing the concert with my voice in good shape right after the end of the Chemo.  


 It is important for the patient to understand all of the side effects of the chosen procedures and be prepared to enlist the help of the procedure specialists ahead of time in dealing with ER and attending physicians that may not be aware of some of the less common side effects.  One that I found out the hard way was that perfusion can totally shut down the GI system so that no food is processed even if it can be forced down.   Another is the tongue can be totally disabled by sores and thrush so that even liquid nutrition ingestion is difficult without aggressive treatment of the thrush. A popular Chinese folk medicine called Watermelon Frost in English was helpful once the GI system was able to process food. It is unknown to most physicians as it is not an officially recognized treatment of tongue sores.  Ask a Chinese friend who will probably have it at home or can get it for you at a Chinese ethnic market.  Professionals on the Oncology staff should know about this folk healer and suggest it as "maybe helpful." They have suggested Culturelle and L-Glutamine as "maybe helpful" and they have been "maybe very helpful."

 The aggressive treatment as advertised nearly killed me after each Chemo session not helped by some "going through the motions" inpatient attendings, but I actively managed my treatment and made it through the rough spots.  It was all worth it as the cancer was undetectable at the end of the treatment much to the surprise of the tumor board. 

 A routine checkup nine months later showed a recurrence of tumor and a new round of the aggressive Chemo was tried.  That one had to be terminated half way through because of a new side effect that caused a cardiologist to discontinue the chemo.  The tumor was half gone but that was not good enough so it looked like I would have to bite the bullet and go ahead with radiation.  I eliminated all the other options after thorough investigation with the help of the radiologist who in his investigations found a procedure that would minimize radiation exposure to the vocal chords while providing therapeutic radiation to the cancer.   As he explained it the chords would be minimally affected but there were no guarantees on the rest of the instrument.  Again I had an important concert at the end of the procedure and decided that if I exercised the instrument diligently I might even be able to sing the concert.  A different chemo and the radiation was benign enough that singing daily was no issue, and the voice survived the treatment in better shape than before the treatment.  I sang my part of the concert and even got a few unsolicited comments on my vocal quality.  

 I don't assume that I am done with cancer even though the latest scans are clear, but pushing the specialists to find alternatives to the standard and very effective treatment of Cisplatin plus aggressive radiation, has resulted in a treatment protocol that I can live with that has minimum inpact on the important lifestyle choices that are necessary to happiness. I assume it does not comply with the cancer industry's paradigm of kill the cancer at whatever cost to the patient, but it works for me.  

 The Kaiser Foundation's Northern California HMO worked just as advertised.  They put my lifestyle needs first throughout the treatment protocols, and once I refused the "No problem, the cancer is above the clavicle we can cure that for sure with Chemo and Radiation." they put the whole Northern California Cancer team on working out an acceptable solution to my treatment. Specialists as far away as Sacramento were involved to rule out a new hi-tech surgical procedure to deal with the residual cancer, and the pros and cons of Proton radiation therapy were explored with an associated facility at Scripps Institute.   

 They certainly lived their motto of "Thrive" according to the patient's lifestyle standards.