| | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | I'd really like to talk to people who have been diagnosed with HPV+ tumors. I have been struggling with this part of my diagnosis and want to know how others have dealt with it or are dealing with it. I'll start here and see where this thread goes. -Michelle
Last edited by Michelle Ann; 01-28-2011 08:48 AM.
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Im not HPV+. You are lucky!!! You have a much less chance of having a recurrence.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Michelle,
Send a PM to Davidcpa. He is the resident expert.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 68 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 68 | You can contact me directly at the foundation if you want to talk.
HPV16+ 12 year survivor. Brian
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: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Michelle Ann, between Brian and David you'll get a wealth of good info and advice. I do think we're among the lucky ones here with our HPV positive status. Please count on us to help you through your ongoing treatment. David 2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Apr 2011 Posts: 4 Member | | Member
Joined: Apr 2011 Posts: 4 | hey Brian my name is Brian I am having some issues with my throat was diagnosed with HPV a while back I think it spread to my throat and am experiencing discomfort in swallowing and my ear is starting to hurt and ring constantly it does feel like its spreading please help. Brian | | | | | Joined: Mar 2002 Posts: 4,918 Likes: 68 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 68 | So who and how were you diagnosed with an oral HPV? This isn't easy to do in men and before I answer your question I want to be sure I am dealing with all the facts. Michelle Ann - you asked the question awhile back and never returned to the thread you started. Have you found all the answers you were looking for?
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: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2011 Posts: 131 Likes: 5 | Zach, I've done some homework since DX. You find there are about 144 strains of HPV. You need a genotype ID to varify if you have #16 (or in rare cases #18) If you are only having a general positive without some typem of biopsy then you are only being tested for the antibody which not only will about 50% of American males will test positive for but will do so for life long after they have kicked out the virus. HPV16+ oral cancers are happening in about 1 in 4,000 males right now. They say we have an advantage over HPV16-(neg) cases but that a smoking history will negate this advantage. You are going to find a lot of conflicting "facts" and opinions out there. This site has been a HUGE help for me. You need to go to an ENT doctor, get scoped. insist on diag. work and possibly some biopsys. You'll be fine. You might jsut have an ear infection but go get it checked right away so you can get some piece of mind. Oh..and if you do have oral HPV it didn't "spread" to your mouth. I'm of the shcool that that's where we caught it, but what do I know. Stick around, you'll be alright.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Apr 2011 Posts: 4 Member | | Member
Joined: Apr 2011 Posts: 4 | I was diagnosed a while back when a girl I was with got it and gave it to me and after about a month she told me she had cervical cancer so Im guessing thats one of the bad strands (above 6-11) andI believe I got it orally and that makes me a greater risk for orolaryngeal cancer along with other types I have been to a ENT in the woodlands and he told me It was acid reflux I know its not now b/c its not going away.
In a bind
Brian | | | | | Joined: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2011 Posts: 131 Likes: 5 | My MO told me I probably picked up (and possibly cleared) the HPV16 20 years ago when it "planted a seed" that turned into cancer 15 years later. I was stage 4 so I probably had it for 1-3 years before it bumped out into my lymph node...and I had that for 18 months for lac of health insurance. Go get a second opinion.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
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