Hello all-
I was diagnosed with SCC on my upper right gum in September and had surgery that removed about 1/3 of my upper right jaw bone, associated teeth, and about 50% of the roof of my mouth.
Following surgery the PET Scan showed a very small amount of cancer in the margins, so I had 33 rounds of radiation. I finished radiation on 12/5/12, and have lost 30 pounds since diagnoses. I am a non smoker and non drinker. I understand there is no test for HPV for men. Is this true? I have not been sexually active (outside of marriage). As with all of us, this cancer was a shock. I was off work for 5 weeks but am back and doing reasonably well. I am tired, still have some sores, and have about 50-60% of taste. I am anxious about my next PET Scan in March, and also about the reoccurrence rates of this type of cancer. I appreciate the forum and reading everyone's info. Best wishes and prayers for all.

Eric

Hi Eric,

So sorry that you have cause to join the forum, but like many members will tell you, this is the best place to be for knowledge and support. Men can be tested for HPV too, as my husband was and many others on this forum. Our RO told us that many people get type virus in their lifetimes, but some are able to stay unaffected but others develop cancer. HPV responds well to treatment and the prognosis is generally better than oral cancer caused by smoking.

It is very unlikely that HPV was the cause of your cancer. To test for the presence of HPV orally they test the actual cancer cells which still can be done but I doubt they will as that is not a place where HPV statistically attacks. If your Primary had been located in the Base of Tongue (BOT) or your tonsils then there would have been a 70% chance that HPV caused that tumor.

Sorry for your troubles, but welcome. The pathology report from your surgery, plus surgery report should say if you had positive or close margins, so you may want to look at that, plus it has other information too. PET scans can show false positive from scar tissue, swelling, and doesn't prove cancer, only a direct biopsy, FNAB or other biopsy can, plus has other info. It's not true about no test for men. They can still do a HPV DNA test on any tissue samples taken for biopsy, if frozen, but what David said is true, and may not have been tested, maybe you were? You may want to know since it effects prognosis being you are interested in stats, and being HPV positive shows improvement in treatment, and prognosis by 20 percent, if not more by recent data. Most recurrences for SCCHN ocurr the first two years, probably the first year is higher, but that's a general average, and does not include other information which can make a difference in prognosis. Two things that greatly effect prognosis is tumor size, and nodal involvement, and see nothing about nodes in your post, but again, other factors are involved. Otherwise, it sounds like you are doing well in your revovery, and should look forward to a clear scan.

Eric, did you have recurrence of the lesions on your gum? meaning, did they come and go like a sore at first or did you notice it and then it continued to bother you?

My upper right Gum first felt like I had burnt the gum by hot food. It felt tender. After a few weeks a white legion appeared and I went to my dentist who thought it was a fistula type gingivitis infection. I was prescribed a mouth rinse for gingivitis. After a couple of weeks, the "fistula" continued to grow and became probably 1/2 inch long, just above the teeth. The periodontist said everything was fine, but did a biopsy. Two weeks later I was told the news it was SCC. When the periodontist did the biopsy he cut the entire spot out. For a few days it was gone,but the open spot felt weird and bleed a lot. In the few weeks between the biopsy and my acuatal surgery, I could feel the SCC growing quickly. So no, it did not come and go until after the biopsy.

Thanks so much for the informaton. As far as I know, I was not tested for HPV, but my doctor stated almost everyone has HPV at some point. Other than the stats on HPV related cancers and their cure rates, I just want to know if I am HPV positive to know if my wife is at any greater risk from an HPV type cancer.

Again, thank you for your input and wonderful information. I am a 52 year old male. I am so glad that you sound like you are doing well.

Welcome to OCF! You have been thru alot! Recurrence is something we all fear and worry about. After going thru so much its perfectly normal to be apprehensive about getting sick again. It takes alot of practicing mind over matter to overcome this fear. Wish I had special tricks to help you avoid going to the "what if's". If you worry try to only allow yourself so much time to think about those dark subjects then 'change the channel' and move on to more positive thoughts.

Best wishes with your continued recovery.

Eric,

Being exposed to HPV is one thing and studies indicate that by age 50 a large % of females show the antibodies to it and therefore exposure. There is no current HPV testing for males other than cancer cells so we have to assume that males and females continually pass the virus back n forth through sexual activity. HPV does cause at least 7 different cancers and the scienfific community still is unable to pinpoint WHY sometimes an exposure leads to cancer. While I'm pretty sure you have been exposed to HPV, perhaps several times in your life I doubt seriously that your cancer was caused by HPV due to the location of the source or Primary of your cancer.

Thanks David,
My next doctors appointment in on 1/22 and I plan on asking if the cancer was checked for HPV. I find it very interesting that HPV cancers appear to be growig quickly in the number of cases, but also have an better treatment outcome. My wife has all her normal women and health check-ups and tests each year, but HPV has always worried me. BTW-I noticed from your profile you are on your Town Council. I have served on my Town Council for 6 years and have really enjoyed Council service in our town. I am glad that you seem to be doing well. I am looking very forward to my PET in March.

The reason that we now see more HPV+ SCC cases is that we now test regularily for it's presence if the patient presents themselves with certain characteristics like Tonsil or BOT Primary, Non smoker and mets to nodes. These are an indication that HPV is the culprit.

Hi Eric... Based on your information and that is in the gum area I'd say its not HPV + - HPV + is virus related cancer - perhaps that's why it is easier to kill. Hence the better outcome. I'm sure someone else will comment if I am wrong. but it is definitely.good to know for sure - best of luck with your scan,

HPV is complex, is biologicall different as Cheyrl mentioned, and its treatment success may have to do with oncogenes E6, E7, pathway expressions, and tumor suppressor genes, like p53, that are different than tobacco or alcohol related cancer. I'm not fully sure, and I don't know if the medical community fully knows for sure either, but it is difficult to understand unless you are a biologist or scientist lol.

Here are some reported facts, and this may even have changed with current data, studies.

80 percent or more of the population has been exposed to HPV. 35 percent of all H&N cancers, and 77 percent of tonsil cancer can harbor HPV, with 66 percent being HPV-16, and the oropharynx is 6x more likely to demonstrate HPV postive than other sites, and has now replaces tobacco as the leading cause of Tonsil Cancer. If tonsil cancer spreads locally, it often does to the tongue, soft palate or nasopharynx, and often to the lymph nodes.

There are studies showing an increased risk of Oropharyngeal cancer among spouses of women who have a history of dysplasia attributed to HPV, and an increased risk of tonsil cancer among HIV positive men, and an increased risk of tonsil cancer in people with a history anogenital cancer.

Also, with Head and Neck cancer there is a high risk of secondary cancer, either synchronous or metachronously, so dr visits, physical exam, and diagnostic tests are important for suspicions of changes.