Long term survival and dysphagia in HNSCC patients

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Long term survival and dysphagia in HNSCC patients

by NJM01 on Mon Apr 08, 2019 08:41 AM

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An interesting and by turns, positive yet confronting read: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6258135/ I’d be keen to hear from the 5+ year club on how they read this and relate to its comments about longer-term dysphagia in particular. The longer-term survival stats seem to suggest (rounded-up) that non-smoking HPV/P16+ patients have odds circa 70% but there does appear to be a decrease in overall survival over time. This accords with other articles I have read that suggest the initial survival benefit conferred by HPV/P16+ does continue but diminishes the further out one gets from the date of diagnosis. Subject to my next PET scan in September being clear, my oncologist is very confident that I will make the 5 year “cure” mark. As a 45 year old however, I do wonder from time to time whether I will see 60... In any event, I’m living for now and grateful to be alive! Stay strong, N

RE: Long term survival and dysphagia in HNSCC patients

by Janey6 on Thu Apr 11, 2019 10:54 PM

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On Apr 08, 2019 8:41 AM NJM01 wrote:

An interesting and by turns, positive yet confronting read: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6258135/ "" target="_blank" rel="nofollow">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6258135/ " target="_blank" rel="nofollow">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6258135/ I’d be keen to hear from the 5+ year club on how they read this and relate to its comments about longer-term dysphagia in particular. The longer-term survival stats seem to suggest (rounded-up) that non-smoking HPV/P16+ patients have odds circa 70% but there does appear to be a decrease in overall survival over time. This accords with other articles I have read that suggest the initial survival benefit conferred by HPV/P16+ does continue but diminishes the further out one gets from the date of diagnosis. Subject to my next PET scan in September being clear, my oncologist is very confident that I will make the 5 year “cure” mark. As a 45 year old however, I do wonder from time to time whether I will see 60... In any event, I’m living for now and grateful to be alive! Stay strong, N
Just be careful of swallowing problems as time goes by. My hubby had several aspiration pneumonias after 5 yrs NED. Fibrosis seems to keep forming. He had to get tube after 5 yrs. RT, a gift that keeps on giving. HPV+ cancer is less aggressive. Most cancer centers are using less intensive RT because the side effects are worse than chemo.....and they continue forever.

RE: Long term survival and dysphagia in HNSCC patients

by Sdurnell on Fri Apr 12, 2019 12:32 AM

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I won't pretend to understand everything in the study, but it does seem to me that it shows that folks who are HPV positive  have longer survival, and also those whose primary cancers are surgically removed do too.  I was diagnosed 8.5 years ago, and not as much was understood then as now about how HPV affects outcomes.

And in fact, I was declared HPV negative, but my doctors don't believe that test was accurate.  I have never smoked and am a light drinker and female to boot, so I have no indicators for H&N cancer.

I also don't fit into the study criteria, as my primary tumor was never found (T0).  I had the offending lymph node removed surgically and radiation to my entire neck, but only for 5 weeks, so fewer grays than most.

The dyspagia aspect was interesting too.  I spent a year on a tube because I could not swallow.  I aspirated at all thicknesses and had several pneumonias during that time.  Since then I have required regular throat dilations to keep eating by mouth, but no aspiration pneumonia.  But anecdotally I have heard that over time folks' swallows can deteriorate over time.  My swallowing apparatus was never damaged (I couldn't swallow because my throat had swollen completely shut), and I don't know whether that affects my chances of having the "late radiation effect" of losing my ability to swallow.  I have already noticed that my voice quality is going downhill, no doubt one of those effects.

I also had no chemo with my radiation, but there isn't much in this study on that.  Pretty unusual then, but that approach seems a bit more common now with HPV+ tumors than when I was diagnosed.

And remember that survival for everyone diminishes with age, so that may have something to do with the decline of survival in later years.

So as to how it would affect you, hard to say.  If you had your primary tumor surgically removed that sounds like a good thing.  And I assume you are not a tobacco user and are HPV+, so those factors bode well for you too.  My guess is that you will live long beyond 60.

Susan

RE: Long term survival and dysphagia in HNSCC patients

by KyGal_KY on Fri Apr 12, 2019 04:07 AM

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I am 7+ years out from my base of tongue cancer.  The key is that I am alive and have survived a horrible treatment regiment.  I never had too many issues with my feet/hands from the chemo.  I did lose alot of my hearing and developed very loud ringing and have worn hearing aids for 6+ years.  My biggest issue is from the radiation - especially with swallowing, the size of the month opening and pain on the tumor side and I know I need to be concerned with aspirating possibilities.  I'm actually having a swallowing study in a couple of months which should prove interesting as my last one was right after radiation and I was aspirating on everything.  I see a massage therpyist every 2 weeks that works on my neck and shoulders to combat the scar tissue side effects of radiation.  Will my life be shortened because I had chemo and radiation?  I'd say yes, it probably will, so I try to take really good care of myself.       

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