#93601 04-12-2009 12:44 PM | Joined: Apr 2009 Posts: 9 Member | OP Member Joined: Apr 2009 Posts: 9 | 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
Last edited by Peter_Stuttgart; 04-12-2009 12:45 PM. Reason: typing error
Age 51 ; non -smoker -drinker Jan./09: nothing. March 3./09: Biopsy: SCC T4, side of tongue. Reason: perhaps chemical burn by germicide after tooth extraction. 03/09: CT, MRI, scintigraphy, endoscopy etc: Dx T4N0M0. Then: IMRT+1 week cisplatin April 15th/09: ongoing IMRT; tumor shrunk by ~50% | | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2009 Posts: 54 | 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.
Sweetpea ******** 2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33 | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | 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.
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | 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.
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | 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.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | 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.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | 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
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | 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.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | 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 | 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.
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 2009 Posts: 9 Member | OP Member Joined: Apr 2009 Posts: 9 | 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.
Last edited by Peter_Stuttgart; 04-14-2009 02:03 AM. Reason: something forgotten
Age 51 ; non -smoker -drinker Jan./09: nothing. March 3./09: Biopsy: SCC T4, side of tongue. Reason: perhaps chemical burn by germicide after tooth extraction. 03/09: CT, MRI, scintigraphy, endoscopy etc: Dx T4N0M0. Then: IMRT+1 week cisplatin April 15th/09: ongoing IMRT; tumor shrunk by ~50% | | | | 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 | 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.
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 2009 Posts: 9 Member | OP Member Joined: Apr 2009 Posts: 9 | @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.
Age 51 ; non -smoker -drinker Jan./09: nothing. March 3./09: Biopsy: SCC T4, side of tongue. Reason: perhaps chemical burn by germicide after tooth extraction. 03/09: CT, MRI, scintigraphy, endoscopy etc: Dx T4N0M0. Then: IMRT+1 week cisplatin April 15th/09: ongoing IMRT; tumor shrunk by ~50% | | | | 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 | 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 _________________________
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Please just let people fill in thier signature when they feel up to it.
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | 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.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | 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 | 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. 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 | | |
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