Previous Thread
Next Thread
Print Thread
Page 3 of 3 1 2 3
jbms #182320 06-10-2014 05:30 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
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.
jbms #182324 06-10-2014 07:59 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"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
jbms #182325 06-10-2014 08:00 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"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
jbms #182397 06-12-2014 11:44 AM
Joined: May 2014
Posts: 14
jbms Offline OP
Member
OP Offline
Member

Joined: May 2014
Posts: 14
Anyone know about how long it takes for biopsy to heal


Js
jbms #182398 06-12-2014 12:07 PM
Joined: May 2014
Posts: 14
jbms Offline OP
Member
OP Offline
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
jbms #182401 06-12-2014 02:47 PM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
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.
jbms #182402 06-12-2014 02:48 PM
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
Offline
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#Post163644

09/09 - 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!
jbms #182403 06-12-2014 02:54 PM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
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.
jbms #182406 06-12-2014 03:08 PM
Joined: May 2014
Posts: 14
jbms Offline OP
Member
OP Offline
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
jbms #182407 06-12-2014 03:17 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
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






Page 3 of 3 1 2 3

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5