Cancer "undectable" after 2 1/2 weeks of treatment

Posted by toleolu @toleolu, Sep 5 12:39pm

I was diagnosed with HPV cancer in my left tonsil and an adjoining lymph gland back in Feb. I started the 7 week chemo and radiation therapy in late March. I quit treatment 2 1/2 weeks in because putting any solid food mouth would cause me to gag. No pain, I hadn't gotten to that point yet, just gagging. I'm 71 years old and with the prospect of having a feeding tube put in, I just said screw it, it's not worth it, I'd rather die.

The medical staff freaked out, gave me all kinds of gloom and doom predictions about what would happen. But I chose to listen to my body instead of them.

What happened is that after almost 5 months post treatment, my cancer is "undetectable" by either biopsy or PET Scan. It doesn't mean the cancer is gone, it just means they can't find any with today's technology.

Back in Feb. My NavDX blood test came back with a score of 59000 and some change. The one I took two weeks ago came back with a score of 5.

For the biopsy, they could not find any cancer on my tonsil so they stuck syringes into my neck to try to draw something they could biopsy that way. They used four syringes and found nothing.

The PET scans don't show anything, but as I understand it, the cancer needs to be roughly the size of pencil eraser before it will show up on the scan. I even had an MRI two weeks ago, nothing.

My plan going forward is periodic PET scans and NavDX blood tests to monitor the cancer. If the tumor starts growing, then we'll probably just do quad shots and try to control things as best as we can. I'm probably going to die in a few years, but with my family history of dementia and alzheimers, that's OK with me.

I'm not making any recommendations here or advising anyone to do anything, just passing on my experience in hopes that maybe it helps someone down the road.

One question you might ask if you're going through the same thing I went through is if when it comes to side effects and other outcomes from treatment, everyone is different, then why is it when it comes to the treatment itself, everyone is the same? I never did get a good answer to that question, hopefully you have better luck.

God bless and best wishes to all.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

William Olsen, Volunteer Mentor | @hrhwilliam | Sep 5 7:50pm

I’m with you on this limited radiation. It seems if you’re not cooked like a duck in the oven, you won’t be cured. But the history of radiation therapy tells a different tale. Early on radiation was limited, very limited compared to today. Yet as time went on, more is better became the standard. After all, failure was not a good option. Yet even with the weeks of radiation and the Chemotherapy, success is still not guaranteed.
I know two that went through the hell twice and still did not survive. Others, and it seems more common, have done well with the standard treatment or with limited treatment as others in this group will attest.
Stay strong, eat well, and let’s hope you are fully back on track. Healthy again, just where you were when you got sick the last time. I had to include that last part because none of us get immunity from ever getting cancer again. We just hope we don’t win the lottery twice.

woodsy1 | @woodsy1 | Sep 6 5:56am

Thanks for the post treatment update. Looking good for you so far.
I was in the same diagnosis boat about the same time as you
with the same outdated standard of care treatment plan of 7/35.
I said no feeding tube from the start as well and ended treatment when my throat was cooked but could still swallow. total treatments 3 and 24. Cancer free to date.
I asked why the same treatment plan for me as someone at stage 4 and was told they will
probably be doing things different 5 years from . Bad answer. They as I are well aware that this cancer is cured most often with 1/2 of the standard treatments.
Anyhow, as usual follow the money at not all but a lot of these cancer treatment centers.
Sad but true.

Sue, Volunteer Mentor | @sepdvm | Sep 7 9:05am

Our medical teams can only present us with the data collected from studies of all the patients who have gone before us. As research progresses, more detailed knowledge will offer a more individualized predication of treatment for each of us. With so much variation of location and invasion and aggression of the cancer, accurate prediction seems like an unreachable goal. Currently the abbreviated radiation protocol is more accepted in post surgical cases. What is needed is more money donated for head and neck cancer research so that more information is collected, similar to the huge breast cancer research funding. Do we want our doctors guessing about our treatments and prognoses, or do we want information backed by research?

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