| 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 | Eileen, Well when you put it that way it does sound stupid to think that there couldn't an HPV+ patient with a tobacco history. I guess I have just been blinded by the thought that if I had SCC and I was not a tobacco user then HPV was likely my cause and the reverse seemed logical that if I had SCC and I was a tobacco user then tobacco was the likely cause. I guess it's even a logical conclusion that a tobacco user could have 2 different Oral cancers going on at the same time. One HPV+ and one HPV-. The more I think I understand, the less I really know.
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 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | David, One person with two primaries, one from HPV and the other potentially from smoking sound possible enough, but so far non of the studies have reported this. They do seem to routinely find that at least 20% of the HPV caused SCC is found in people who also happen to smoke. The percentage of HPV caused OC found in smokers should closely parallel the smoking rate, and (guess what!) that rate is also about 20% of US adults.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | My MO is working on the "she's only 40 it's probably caused by the HPV16" theory. Stating that it wont make a bit of difference on how we treat you. What will be different is the reoccurance rate. I have to say. This was the only time in my life I HOPED to be positive for an STD. Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | I'll drink to that...although since this surgery .....they may not be far off lol
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | 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 | Don,
I wonder if they ever look beyond finding one or the other? So many variables to consider and I'm still stuck in the marvels of our Universe.
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 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | David, For Oropharynx OC, I believe the percentage attributed to other "unknowns" was roughly 15% in the May 2007 study:
Case�Control Study of Human Papillomavirus and Oropharyngeal Cancer (Maura L. Gillison, Johns Hopkins et al...)
The way the study presents this "slice of the pie" using odds ratios and seemingly very broad Confidence Intervals for each of these possible (but perhaps unlikely) risk factors makes it hard for me to be sure if I am understanding it properly.
("Unknowns" being genetic, various dental hygiene factors, diet, low BMI, and others mentioned in the study)
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | It's like trying to debate the chicken and the egg theory. You will just spin your wheels, chase your tail and drive yourself mad. Too many veriables and with humans there will always be. What is important is fixing it. IMO
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Amy,
I did not have the same treatment you are having but I did have a panic attck and it is scary!!! I was in a meeting at work and had to leave. My fiancee took me to the hospital and they said I was fine. Now every time I go my oncologist I'm scared. I started seeing a therapist and that has helped me a lot. I'm sure you feel overwhelmed with doctor appointments and can't think about another one, but seeing therapist is the only thing that has helped me. I go every 2 weeks and I take Lexapro. They gave me Xanex and it did not help. Lexapro (and other meds) are taken daily and keep you on a even keel so you can cope. You should talk to your doc about it. It has been a miracle for me.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
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