2 weeks post-treatment

Just a note to all of you looking for information about what to expect during and after your treatments. It’s not ALWAYS as bad as so many say.

I was diagnosed with locally advanced base-of-tongue cancer in March 2019, when I was 63. “Locally advanced” means that the cancer has spread to one’s lymph nodes; it has spread, but not beyond the immediate region of the originating tumour. In my case, it had spread to my right, level II lymph nodes. Diagnosis took a while, because two fine needle aspirations of those lymph nodes brought out only “gunk”: dead cells. The final diagnosis was done via “open biopsy”, i.e. by snipping pieces off the base of my tongue in surgery and under the care of an anesthesiologist.

I declined chemotherapy after carefully investigating the side effects of chemo, the effects of chemo on top of radiation, the side effects of radiation only, and the survival and recurrence rates of both chemoradiation and radiation alone. Because I skipped chemo, my radiation oncologist put me on an accelerated schedule: 35 doses to 70 Gy over six weeks.

It’s Friday September 27, 2019, and I am now 2 weeks post-treatment. I never had any fatigue. I never had nausea. I did not suffer from ototoxicity, tinnitus, neuropathy, renal problems, or immuno-suppression problems. I have not had thrush. I did, and still do, have some mucositis low on my soft palate. I have an ulcer on the right side of my tongue, but it’s slowly disappearing. I wear a beard, and I lost most of the bottom half of it. I’ve discovered that I look a lot more like one of my younger brothers than I thought! My skin on my neck got pretty red, and then turned nut brown. Then the topmost layer of skin peeled off to show my normal colour. No weeping skin at all from radiation “burns”.

I’ve retained probably 95% of my saliva production, and have not had significant dry mouth problems.

I was warned that the 2 weeks following treatment would be the worst, but seriously, I haven’t had significant problems.

I can swallow anything I want. Some tomato-base products contain too much acid, and my mucositis feels that. I’ve lost my salt and sweet taste, so most food is no longer palatable. I deliberately put on 20 lbs of muscle on my thighs and glutes before treatment, and I’ve now lost that weight, so I’m back to my original 170 lbs (I’m 6’1″). I feel good. My wife and I are getting better at finding foods that taste just fine. Last night, for example, I had a big serving of simmered chicken in broth with brown rice. It seems that the only things I need to stay away from have a relatively high acid content or tannin. So no tomatoes and no grapes. I’m trying to eat more fruits, but many of them hide a high acid content behind the sugar that I can’t taste.

I recognize that many people suffer horribly from the side effects of Cisplatin + radiation. But I wanted to point out that some people actually do come through treatment relatively unscathed.

Tips:
1. Talk to both your medical and radiation oncologists about the pros and cons of chemo. Don’t go for chemo simply because it’s the normal thing to do.
2. Talk to your radiation oncologist, or a General Practitioner in Oncology (yeah, that’s a real position within my team) about taking drugs prophylactically to ward off mucositis. In my case, I started using benzydamine (aka Difflam and Tantum) from day one, and I think it helped.
3. If you have amalgam fillings, or any metal in your mouth really, talk to your dentist and to your radiation oncologist about having your dentist build a radiation stent to reduce the effects of “backscatter radiation”. I wish I’d known about these stents; I’m pretty sure it would have reduced the size of the ulcer I have on my tongue immediately next to a couple of teeth with amalgam fillings.

It’s good to do research. But don’t despair that your life will be hell; I thought it would be too, but that’s not the way things have turned out.

-Ken