Hello,

just registered to the forum, I would like to introduce myself. I am 51 years old, and live and work near Stuttgart, South-West Germany. I used technical english every day, but my style may be a bit humble for these topics here, I apologize for that.

Hav�ng been (formally) perfectly sane and strong until the middle of January 2009, when a dentist inspected several teeth in my mouth; there was absolutely nothing suspicious to the eyes, even I myself did not realize any strange feeling or swelling. I didnt ever smoke a single cigarette or else in my life, and my alcohol consumption amounts to maybe 1 glass of wine per month. Few weeks later a swelling at the side of my tongue turned out more persistent than just a temporary irritation. Things went very fast then: March 3rd: Sample extracted for analysis, March 6th: Result malignant, March 9th: Entering a big university hospital. 2 Weeks of most thorough investigations of everything including endoscopy of bronchial tubes and esophaus, scintigraphy of bones etc. etc.; sofar fortunately no metastases, and nodes clean. Meanwhile the tumor had grown to the height and thickness of an oreo cake und with a length of approx. 2 oreos.


After time consuming therapy planing I was treated now with cisplatin and (more important) very sophisticated computer-optimized intensity modulated radiation therapy. Therapy is ongoing, and 9 days after begin, the tumor is shrinking
every day!

This is a big joy for me, of course. So far, everything can
follow the approved paths of modern medicine, but:

Two weeks ago a friend of mine, physician by profession (gynecologist) came across a thing, which, surprisingly, is
not discussed at all in Germany: The chance of getting
oral cancer by HPV infection through oral sex. This was very suprising and shocking for both of us, because noone ever
has considered such. After some literature review, also this website was discovered, and the theme HPV was the main reason for me to register for this board.

Meet you maybe in another thread....

Best regards -
Peter

Welcome Peter. You'll find lots of friendly people here willing to give help. I think your command of English is very, very good. Do you know the type of cancer you have? I have Mucoepidermoid cancer (MEC). of the Submandibular Gland. I'm negative for HPV. Most of the people who have HPV seem to have Squamous Cell CA. I know it's an important topic that deserves lots more study. The group is trying to get the word out to the public that HPV is a risk factor for oral cancer just like smoking.

Welcome Peter,

Yes the HPV connetion was formally determined after much speculation in 2000, research sponsored by OCF and the National Cancer Institute done at Johns Hopkins. If your doctors want a bibliography of what we know I can help you with this.

On another topic you are near a good friend of mine, Dr. Axel Kirsch who lives in Fielderstadt, and has an oral and maxillofacial surgical practice in Stuttgart. We worked together for many years on dental and facial implants. I have spent a great deal of time in your city and love my trips to it.

I wish you a rapid return to full recovery and normal life. From your posting it sounds like your treatment regime is almost identical to what we are doing here in the US, with good success.

We welcome you, Peter, and are glad to hear that your treatment is shrinking the tumor - good news! It sounds as if they are very thorough in their research/treatment so that will help you. Is it a comprehensive cancer center? Yes, they are finding that HPV is indeed one of the causes of oral cancer....although some get it for "none of the above", or as my husband's doctor said "just bad luck". Please keep us updated how your treatment is going and we welcome you to our family.

Wecome to our College of OC learning. Just kidding but we have some in here that deserve a degree for the amount of hours they put in studying this disease. You will find any type of help you might need. Good luck and may you just have a short fight to beat this.

Hi Peter...welcome to OCF. I am happy to hear that your tumor is getting smaller...that is wonderful news!!! I'm sure you will be hearing from David who knows a lot about the relationship between HPV and oral cancer. There are a lot of great people here who will provide you will information and support.

A welcome from me as well Peter. It is really great that your treatment is working however I would suggest looking up Brian's expert contact in Stuttgart.
Your English is perfectly OK and while my spoken German is fluent and reading is not too bad, writing is impossible as I was educated in English.
There is so much information here that will be of help and of course plenty of people who can answer your questions.
Gabriele

Welcome Peter! It's a small world -- I was living in S-Vaihingen, working at Patch Barracks (Kurmaerker Kaserne), when my first tongue lesion was noticed and biopsied by US military doctors in 1990, but didn't result in an SCC tumor until 2005. I've also lived in Waldenbuch and we had a small, informal German-American Club in Schoenaich, where we celebrated an American Thanksgiving every year, with Americans bringing turkey, Germans and others bringing their ethnic favorites. Your English is excellent, far better than my German!

You may be able have your cancerous tissue examined to determine the presence of HPV. Females, of course, can also have their PAP smear examined for the virus.

Good luck with the remainder of your IMRT treatment -- The worst is yet to come in that regard and there is much information here in this forum about it. Like sunburn or cooking with a microwave, even once the treatments are done, you will keep 'cooking' for another two weeks and then it will start getting better.

Peter,

Where on your tongue is, hopefully was, the Primary?

Most HPV+ related SCC are found in the Base of Tongue or the Tonsil region of the mouth called the Oropharynx and are usually caused by 2 of the over 120 strains of HPV known. Most are caused by HPV 16. Most HPV cases also involve mets to the nodes before diagnosis. Most HPV patients are male, younger than tobacco related SCC; non smokers and casual drinkers.

Three years ago HPV was not widely even recognized as a cause of OC but now there is more information available including tons on this site. Recently though I have seen an increasing number of patients that present a Primary tumor outside the Oropharyx region; are non smokers and light drinkers and do not test positive to HPV. As is with tobacco related SCC, their cancers seem more aggressive and therefore more resistant to standard Tx.

Welcome to this site. It will be the most valuable FREE source of information and help possible. Of course Donations are always welcomed.

Hello everybody,

thank you for the warm welcome! I have already received very valuable information in the forum section "oral cancer recurrence"! Great! And: How good to have internet access in my hospital room!

@Brian Hill: Thank you for mentioning Axel Kirsch, it may be a good idea to chose him for supervision when I will be back!

@Lostpassword: Yes, it is surely a very good one, working in closest collaboration with the german cancer research center ( http://www.dkfz.de/en/index.html )

@Pete D (and also Brian): Yes, it is really a small world! I do work in S-Vaihingen, at the university, and I know the Patch Barracks as well (only from the outside)! Maybe you made one of the car dealers at the corner happy when returning to the U.S.? (I personally have a different taste and drive a Michigan horse *g*)

@davidcpa: The thing started opposite to one of the last bottom grinder, which had to be extracted. In order to calm the irritation after the extraction, I carefully flushed my mouth frequently with a popular germicide (german brand name: Chlorhexamed) which contains Chlorhexidinbis(D-gluconat) (I hope this is comprehensible also in English). Soon I realized a swelling at the tongue, but I guessed that it simply came from the fact that the whole area was irritated, also due to the broken tooth. 2 weeks later (February 5th) I was at the dentist again for another work, and he said that I am going to ruin my whole mucosa and that I shall immediately stop to apply the germicide, I shall simply let everything in peace. Also during another appointment, February 9th, he said the same. I did that, applied only mouthwash (Listerine and others) several times per day, and also camomille tea, and it seemed (!) that the swelling gets less, although I wondered how an irritation can cause a swelling of 5 millimeters or more. However, after middle of February I got more and more concerned because the swelling didn�t get better, but even worse again, and on March 3rd I went to the dentist again and this time he urgently sent me to an oral surgeon for a better diagnosis, and this was the first time at all I was confronted with cancer.