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Joined: Mar 2002
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OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
Just to make something clear. Outcomes from HPV+ and non HPV oral and oropharyngeal cancers are different because the HPV+ disease appears to respond better to radiation. There is a distinct survival advantage to patients that come from HPV etiologies.

Treatments for oral cancers vary widely, NOT BASED ON HPV etiology, but based on anatomical locations, and the philosophy of the treating institutions and doctors. Given this significant variable, the NCCN set some guidelines for treatment that hospitals all around the country can review (this does not mean they will follow them). These guidelines are established by the really big NCI designated treatment institutions as a group, and them published so that smaller institutions can see what is being done successfully at the big institutions that we sometimes consider the best of the best.

Today the guidelines show that for HPV + or negative disease, patients are treated in the same manner. There has been no clinical trial, and there will not be for years, that shows that we can reduce radiation for instance, to reduce treatment related morbidity and long term QOL issues (because of the significant, documented survival advantage), even though some doctors are speculating that this could be done. But no one is changing treatment protocols yet based on etiology. The next ten years will likely see some changes, but not until clinical trials definitively prove that a reduction in radiation (the most damaging of the treatments in the short and long term for patients) will still have the same cure rate as the levels of radiation being used today.

So there are guidelines that we know have consistent end points that are positive. There are institutions that do their own thing with outcomes that are not published. We have some treating professionals that come from different training and therefore hold perspectives that have distinct bias to particular modalities of treatment, and regardless of the NCCN guidelines - follow their own experiences and preferences.

These are the reasons that we like patients to get more than one opinion, and hopefully to have one of their treatment plans developed at a larger teaching institution that is a NCI member. When it comes to measurable peer reviewed outcomes statistically, the NCCN guidelines are the current standard of care in the USA.

There are lots of ways to skin a cat. However no two cats are exactly alike. But there is a way to do it that for the majority of cats ends up with the best results.

Last edited by Brian Hill; 02-15-2013 10:03 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Feb 2013
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nayucla Offline OP
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Update: She had another scan completed on Friday. We are taking the CD of the scans to the radiation oncologist on Wednesday and she also sees her regular oncologist on Thursday. Then we were advised to make a new appointment with her surgeon.


Nay, daughter/caregiver to:
Mom (65 yrs), non-drinker, non-smoker
Mandibulectomy+flap reconstruct: 3/12/2013
Biopsy+CT/PET: April/Sept 2012+Mar/2013
Dx: SCC in the jaw - Stage IV a
Tx: 3 cycles TPF chemo (last cycle ended 1/28/13)
- soft foods diet, hospitalized 2x, jaw bone disintegrated
Joined: Feb 2013
Posts: 20
nayucla Offline OP
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Posts: 20
Her ENT surgeon at UC Irvine is the chair of the department. I'm not entirely sure who else we could get a second opinion from. Unless we seek out the next largest and closest research institution - UCLA. Thoughts?


Nay, daughter/caregiver to:
Mom (65 yrs), non-drinker, non-smoker
Mandibulectomy+flap reconstruct: 3/12/2013
Biopsy+CT/PET: April/Sept 2012+Mar/2013
Dx: SCC in the jaw - Stage IV a
Tx: 3 cycles TPF chemo (last cycle ended 1/28/13)
- soft foods diet, hospitalized 2x, jaw bone disintegrated
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