| 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 | We hear some really foolish comments on this site and this.... doc didn't think it was cancer but said it could be a virus assioated with cancer... ranks right up there with the best of "Dumb Things Doctors Say". First off as Christine points out no doctor can visually tell if something is or is not cancer, only the pathologist can do that and second IF this is a "Virus associated with cancer" like HPV then it is cancer and must be treated just like non HPV SSC. Welcome to this site and do keep us posted.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Kudos david... um firstly the only virus I know of that is associated with Oral cancer is HPV. Location on your tongue --- HIGHLY UNLIKELY it's HPV related. HPV oral cancer usually is found at the base of tongue (down the throat) or tonsil sometimes there is an occult cancer found in your nodes with no known primary. This can mean one of two things. The initial tumor resolved itself (very rare) or it's hiding - often in the tonsil, and is discovered later. So either you have cancer or you don't the biopsy will tell you. Your drs commentary? useless. He's playing both sides of the fence. hugs and good luck
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Check my reply to your other post.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: May 2014 Posts: 14 Member | OP Member Joined: May 2014 Posts: 14 | Anyone know about how long it takes for biopsy to heal
Js
| | | | Joined: May 2014 Posts: 14 Member | OP Member Joined: May 2014 Posts: 14 | David what if it is HPV that means it is cancer ? Or would it be pre cancer ? And what would they treat that with ? Just hope monday comes fast so I can hopefully get results little bit nervous again now . I also have NF1 which I know u can grow fibromas on your tongue so myabe that's what it is
Js
| | | | 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 | Well since the location is not where HPV positive cancer is typically found I seriously doubt the virus is involved. Once the virus has invaded the cell, worse case it basically alters the reproductive cycle of the cell turning it to the dark side or cancer. The only way to determine if that cancer cell was invaded by HPV is to study and stain the cell looking for a specific protein. Other than other oral pre cancer conditions like leukoplakia I have never heard of any pre cancerous HPV positive SSC because I assume the virus is either killed off by our immune system (99% of the time) or converts the cell to cancer. Most/many HPV oral cancers are first discovered by a swollen lymph node and then traced back to the primary site which is usually the tonsils or the Base of Tongue.
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | HPV, which refers to the Human Pamplona Virus, is a possible SOURCE of the cancer, however a diagnosis with HPV does not necessarily prove that it was, in fact, the source of YOUR cancer. The other and more obvious sources of Oropharyngeal cancer are a) heavy drinking in early adulthood (any beyond, if such is the case,) and b) Heavy smoking during the same life-stage. There are probably more, but that's the big three sources in a nut-shell. In this game, having an HPV diagnosis is considered to be a good thing because the perception is that HPV associated patients have an easier time going through treatments. I hope that this clarifies things a bit. And I wish you well. [edit for spelling]
Last edited by Bart; 06-12-2014 02:50 PM.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | 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 | Bart said "In this game, having an HPV diagnosis is considered to be a good thing because the perception is that HPV associated patients have an easier time going through treatments." Not to put words in his mouth but us HPV'ers suffer just as much as your non HPV'ers during the radiation/chemo phase of the treatment but there have been studies that proved that HPV+SCC responds better to the conventional treatment than HPV-SCC and therefore has less of a chance of recurrence which is a good thing.
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: May 2014 Posts: 14 Member | OP Member Joined: May 2014 Posts: 14 | Thank you david and bart for your help like I said before not sure what it is waiting for biopsy results which they said Monday i would get which seems years away snd hoping its neither HPV or scc thank u again i will let u all know what it is Monday
Js
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Also, studies show there is no prognostic benefit being HPV in cancer outside the oropharynx (tonsils, base of tongue, pharyngeal wall, soft palate). http://oralcancernews.org/wp/study-...ncer-patients-to-vary-depending-on-site/
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
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