| Joined: Jan 2013 Posts: 23 Member | OP Member Joined: Jan 2013 Posts: 23 | 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
SCC 9/2012 right upper right maxilla Surgery 9/27/2012 to remove portion of right maxilla DX-after surgery cancer cells in margin RAD-33 TX ended 12/05/12 2/13-current-Severe Trismus and Radation Fibrosis 6/13-clear PET 6/13-Infection in radiation area of mouth, with surgery to drain infection 8/13-ended 40 HBOT treatments 11/13-Clear PET 3/14-Botox injections for severe Trismus 5/14-Clear PET/ 11/14-clear PET Male age 53, non smoker, non drinker
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | 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.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 10 Member | Member Joined: Jan 2013 Posts: 10 | 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?
| | | | Joined: Jan 2013 Posts: 23 Member | OP Member Joined: Jan 2013 Posts: 23 | 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.
SCC 9/2012 right upper right maxilla Surgery 9/27/2012 to remove portion of right maxilla DX-after surgery cancer cells in margin RAD-33 TX ended 12/05/12 2/13-current-Severe Trismus and Radation Fibrosis 6/13-clear PET 6/13-Infection in radiation area of mouth, with surgery to drain infection 8/13-ended 40 HBOT treatments 11/13-Clear PET 3/14-Botox injections for severe Trismus 5/14-Clear PET/ 11/14-clear PET Male age 53, non smoker, non drinker
| | | | Joined: Jan 2013 Posts: 23 Member | OP Member Joined: Jan 2013 Posts: 23 | 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.
SCC 9/2012 right upper right maxilla Surgery 9/27/2012 to remove portion of right maxilla DX-after surgery cancer cells in margin RAD-33 TX ended 12/05/12 2/13-current-Severe Trismus and Radation Fibrosis 6/13-clear PET 6/13-Infection in radiation area of mouth, with surgery to drain infection 8/13-ended 40 HBOT treatments 11/13-Clear PET 3/14-Botox injections for severe Trismus 5/14-Clear PET/ 11/14-clear PET Male age 53, non smoker, non drinker
| | | | Joined: Jan 2013 Posts: 23 Member | OP Member Joined: Jan 2013 Posts: 23 | 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.
SCC 9/2012 right upper right maxilla Surgery 9/27/2012 to remove portion of right maxilla DX-after surgery cancer cells in margin RAD-33 TX ended 12/05/12 2/13-current-Severe Trismus and Radation Fibrosis 6/13-clear PET 6/13-Infection in radiation area of mouth, with surgery to drain infection 8/13-ended 40 HBOT treatments 11/13-Clear PET 3/14-Botox injections for severe Trismus 5/14-Clear PET/ 11/14-clear PET Male age 53, non smoker, non drinker
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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.
ChristineSCC 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 | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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