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.

Peter,

I see you mentioned Listerine which contains alcohol which can damage the cells in the OC so you must stop using any products that contain alcohol in the mouth. There are even those that think that (alcohol based mouthwash) may even be enough to cause the cellular changes necessary for the cancer to begin.

If you are going to continue to post it would be a time saving idea to add your stats to your Signature Line. See mine as an example.

@davidcpa

Of course, I have been thinking a lot about possible reasons for this tumor. Are there really people who can trace back their tumor to the alcohol of Listerine? ( I never used it since March, only a "softer" mouthwash without alcohol). But even more dangerous seems to me the other mentioned chemical. Even more since the package itself contains a warning "do not apply more often than 2 times a day, and not longer than 2 weeks". But this is what I did! So I really should apply for this year`s "Darwin Award" :-(( (readers who should not know the Darwin Award: ask Wikipedia) . But it is so hard to believe: Can a cancer be ignited so rapidly??

Of course I will also fill up a signature. But first I have to understand all those abbreviations, and various data will be available only later.

No I didn't say there were people that traced the cancer back to Listerine but scientists have linked alcohol to the cell damage that can lead to OC and some have said that using a mouthwash containing alcohol may be just as damaging as drinking alcohol as it relates to OC.

No you wouldn't even make the first cut on the Darwin Award so don't beat yourself up. Brian would be better qualified to answer the question re the speed of cellular damage resulting in cancer cells but I would think it is possible for damaged cells to quickly go bad but it takes millions to make a spot so noticing it may take longer.

This may help on the abbreviations:

Acronyms:

BaCC = Basil Cell Carcinoma
Biopsy = tissue sample removed for microscopic examination
BOT = Base of tongue
Brachytherapy = Radiation therapy with internal radioactive �seeds�
CAT = Computed Axial Tomography (scan)
CCC = Cancer Care Center
CT = Computed (computer) Tomography (scan)
Dives = treatments in a HBO unit
DX = Diagnosis
ENT = Ear Nose and Throat Doctor and surgeon
FNA = Fine Needle Aspiration � (Needle Biopsy)
HBO(T) = Hyperbaric Oxygen Treatments
HIPAA = Health Insurance Portability and Accountability Act
HN = Head and neck
HNC = Head and Neck Cancer
HPV = Human Papilloma Virus
IMRT = Intensity Modulated Radiation Therapy
Met(s) = Metastasis or cancer spread
MRI = Magnetic Resonance Imaging (scan)
NCCN = National Comprehensive Cancer Network
PCP = Primary Care Physician
PEG = Percutaneous Endoscopic Gastronomy (G tube or tube) Feeding
PET = Positron Emission Tomography (scan)
PT = Physical Therapist
QOL = Quality Of Life
RND = Radical Neck Dissection (sometimes Resection) also Modified
RO = Radiation Oncologist
RT = Radiation Therapy also Radiotherapy (Radio)
RX = Prescription or treatment
SCC(a) = Squamous Cell Carcinoma also SqCCA and sq cell ca
TX = Treatment
Xerostomia = low saliva
XRT = X ray Radiation Therapy
_________________________

Please just let people fill in thier signature when they feel up to it.

Peter, when we left Germany, I sold my wife's DB to a Brit who was dating an American schoolteacher and my Trabbi to one of my colleages -- It was an original Fluchtwagen, and I traded a bottle of Jim Beam for it (Sold it for USD 50!) -- I really enjoyed the Trabbi as it was fun to drive at slower speeds -- Prior to that I had a 2CV6 'Ente', but it rusted badly.

Peter, welcome to OCF. If you hadnt told me you were from Germany, I never would have guessed by your phrases and typing. Your English is excellent, be proud of yourself.

Im very glad you have found OCF. You will find lots of support here from others around the world. Please feel free to ask questions, things may be a little different in your country than here in the US.

Best of luck with your treatments.