From what I remember thru discussions with HPV+ patients/info gained from Brian Hills expertise, and posts here, HPV+ OC is found 95-99% of the time happening in the Oropharyngeal area. Its very rare for HPV+ OC to be found in any other area like the front or sides of the tongue. Basically the oropharyngeal area consists of pretty much anything in the back on the mouth, the area past the molars which includes the base of the tongue/tonsil area . For base of tongue OC, its not able to be seen without using scopes or other tests to examine that area making it more difficult to diagnose. Plus just like someone who was diagnosed with OC from smoking, many patients have only very mild symptoms that often are not recognized to be a sign of having cancer. As a patient, I would not think a bit of a sore throat was anything serious or an earache could be a sign of cancer. Kristens HPV+ OC is very unusual with her tumors location. Off the top of my head, I cant think of anyone else who had their tumor located outside of the oropharyngeal area.

Thru donations to our small nonprofit (with a worldwide presence) , OCF helps to fund HPV research right from the start. We have, thru Brians forward thinking, helped fund research thru our donations to a young research doc, Maura Gillison's studies. Dr Gillison has been working on HPV for over 15 years and has brought out most info of what we know today about HPV. Even with so much learned about HPV, there is still so much more that is unknown.

As far as I know, at this time regardless of if the tumor is HPV+ or HPV-, treatments still are the same. There have been studies done to see if HPV+ patients can lessen radiation treatments without impacting the patients outcome and odds of having a recurrence. I do not know what the outcome was or if it still is being worked on. Considering its a fairly recent study the long term effects probably wouldnt be available yet. What makes being HPV+ something positive is patients that are HPV+ have less of a chance of having a recurrence. But...(there always has to be a but), if the patient was a smoker that changes everything. Patients who are HPV+ and smoke or are former smokers have the same odds or recurrence as those who had smoking cause their OC. The long term prognosis probably isnt available for this group either. I have known several other patients who have been HPV+ and were nonsmokers but still have had recurrences.

Always remember what works for one may not always work so well for others. For patients who do not have being a medical professional in their background, often have a hard time figuring everything out. All these things can be very confusing to patients and caregivers and thats not even talking about the medical jargon which for most is like a different language. Doctors usually use the guidelines Paul mentioned to determine what the best course of treatment should be. There are so many variables to factor in and of course the "everybody is different" also should be considered when trying to understand how a particular patient should be best treated. The treatment protocols are like big flow charts with a different treatment plans for patients who have different things going on. Along with the treatment guidelines, theres the CCC's tumor board meetings as well. At the tumor board meetings, all the specialists give their input and discuss each case to create an individual treatment plan where all the specialists feel it will be the most beneficial one for each patient. Patients can attend the tumor board meetings and should voice their concerns at that time to help make their treatment plan one that the patient understands and feels is best for them. I know its not easy making these difficult decisions. No matter which path you select we will try our best to help you thru it.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile