#86901 12-29-2008 05:14 PM | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I'm very curious... Why does HPV attack the BOT? Are we sure that other parts of the tongue are not susceptible to HPV? The reason for my curiosity is that there seems to be a great number of people on this site that don't fit the typical profile of an OC patient, but yet they don't seem to have OC that is HPV related. Am I missing something? When I get back to work I might just go ahead and pay out of pocket for my specimen to be tested for HPV...I find this very perplexing...As a child I use to get warts on the bottom of my feet(plantar warts)and on my hands. Once I hit the age of 12 or 13 I stopped getting them altogether. Even though I know that all warts are some form of HPV, and from personal experiences HPV's are very cumbersome--they like to come back. What are the chances of OC related to HPV coming back even after a successful treatment? Or wouldn't the HPV be able to come back to an area that was radiated? My guess is that we don't know yet... Btw--I'm not sure if this makes a difference in my case or not but when I would drink or eat anything too acidic (citrus or tomatoes) my mouth would get these little white painful sores/ulcers. I was so susceptible to this I couldn't even take vitamin C without getting these sores. So, I know my PH levels must be a little off balance. It bothers me that I don't know what caused my cancer...How can I find out?
Last edited by Ray1971; 12-29-2008 05:21 PM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I was just told that I had a very unique type of Cancer. Whatever that means. I used to get warts and spots in my mouth from tomatoes but both have gone. I wish i knew what caused mine too.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 |
How I got OC was something that never worried me. I am a former smoker and had my drinking days a long time ago before I had children. My doctor (Andrews) was kind enough to tell me he couldnt say for sure what the cause was, even though I smoked he couldnt blame it on that 100%.
Same goes for my family doctor. He told me some people have heredity factors or are just pre-disposed to have cancer and maybe that was the weakest part of my body for it to show up.
Anyway, I have not been concerned how I got it, just that I somehow did. To me it doesnt matter at all which may sound silly or stupid, Im just happy to have lived thru it twice.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Christine,
That's the problem...What I do for a living is solve problems. I solve these problems in order to fix them. If I cannot find the cause I know the problem will come back--it might take time but it will come back. I'm talking about my job not cancer. But, if I knew what caused my cancer I would feel much more confident in the solution...Maybe I would have more Q's & A's...I would feel better about the situation.
For the most part people don't get sick in my family until they are really old...They can drink all the booze, smoke and eat all the bad foods and they live a long time. I had a great grandfather that died at age 57...but that was before modern medicine. I'm a nonsmoker that touched little alcohol and I get tongue cancer. OC that is on the increase while smoking is decreasing. I just have a hard time accepting, "We don't know what caused your cancer." I don't buy it...You can't sell me on this...If I was a smoker and heavy drinker...I'd say, "Sure, maybe yes..maybe no...but I have a pretty good idea what caused it.." I like answers. I have a feeling I' not going to get them.
I know it doesn't change the treatments...But maybe it would 5, 10 or 20 years from now.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Ray,
I'm only 46 and this is my third cancer - and no, that's not a typo. When asked, the docs just shrug their shoulders 'cause they have no idea why. There's just something about me, my DNA or whatever that grows cancer. I'm trying to eat right, I plan on exercising more but I think that for some things there's just no explanation. And if I spent too much time wondering "Why me?" I'd probably never get out of bed.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Ray, I can completely understand why you want to understand more about why you might have gotten cancer. My husband wondered the same thing as he was not a smoker and is a light drinker. We requested that his biopsy tissue be tested for HPV and that was the cause for him. It helps him make sense of it (which is important to both of us) but knowing his cancer was caused by HPV raises other questions as we know most people exposed to HPV don't get cancer. But we're glad we at least have this level of understanding. Sophie H.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | margaret gets it. It's in your genes, HPV or not. Some people shed hpv16, some it stays and prospers in. Why? Genetic make up. Thank our grandparents. Everything in this thread has been discussed here ad nauseum. The only new question I will answer, but the answer is on the PDF on the HPV page. People that have hpv16 going into treatments, have it coming out. The treatments do not get rid of the virus. The next logical question would be why. The answer to that is not known. And I can't believe it.... an HPV thread without david.
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I'm speechless!
The $64 question is can the continuing presence of HPV16 still be a threat?
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | And we won't know the answer for years and years. The data on HPV recurrence is short. See OCF news story here http://oralcancernews.org/wp/2008/1...neck-cancers-hold-promise-for-screening/
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 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | Oh I forgot. Certain cells attract certain types of viruses and cancers. HPV loves the tissues it is attracted to, tonsils and the base of tongue which is covered with .... lingual tonsils, made from tonsil cells. There not really called that, but for the sake of an easy description. Hepatitis B and C have an affinity for liver cells. Hence they cause liver cancer. Epstein Barr virus loves naso-pharangeal cells and causes cancer there. There are more examples....
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.
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