| Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Awesome... Hopefully he's right!!! Let us know
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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Good luck with the results.
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
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Congratulations, with a word of caution.
Please ensure that the doctor doing your biopsy, and the people who did the pathology analysis and report, are experienced in detecting cancer.
Six years prior to my initial diagnosis, I noticed a lump under my right jaw-bone, not far from the joint. I went at once to my family doc and asked his what the story was. He didn't know, so he sent me to a prominent ENT in town for a needle biopsy.
Neither the ENT nor the people doing the pathological analysis had significant experience with detecting cancer, and 6 years later, I had the lump removed surgically. Naturally, the surgeon sent the lump for analysis, and the analysis was done at the same lab as the first. Fortunately, the surgeon was not satisfied and sent it out for a second opinion and the cancer was found.
In the six year gap, it had become stage IV, and later IVc (distant metastasis); the later being the one you don't want as it's incurable.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - 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!
| | | | Joined: Nov 2013 Posts: 6 Member | OP Member Joined: Nov 2013 Posts: 6 | Thanks for all the support everyone! I got my results and they said it was fibrosis with myofiber atrophy, mild hyperparakeratosis with superficial bacterial colonization and mild chronic mucositis (thats what the paper they gave me said). She said nothing to worry about, which was a relief. It healed really quickly but now my tongue looks the same as before with the white patches, but they are all a lot thicker than before. When she did the biopsy, she took a big chunk and removed two of the four and I could barely see the other two. I was hoping they would go away so i'm a little bummed they are back worse looking than before. Has anyone experienced this? Is there any other options to make them go away, I can really notice them now and they are kind of uncomfortable. Thanks all!
Ashley, 26 years old, female, biopsy 12/16/13
| | | | 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 | What did she say to do?
This is NOT normal and your tongue should not look like this now or in the future.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I'm going to agree. I would take a wait and see approach somewhat. Go back every few months until they figure out what is going on... It is likely it's nothing I mean nothing unusual - clearly it's something. But with anything suspicious it's good to stay diligent. I had two biopsies. With a large gap in between. A negative biopsy can give you a false sense of security, as I am certain after my second last biopsy, I had cancer. The third one was a charm and yes, it was cancerous. Had the dr. told me he wanted to follow up with me every few months, I would have been there as suggested. However - he said it was nothing, stupidly I believed, and 18 mos later I get a stage 2/3 dx.
hugs and take care.
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
| | | | Joined: Nov 2013 Posts: 6 Member | OP Member Joined: Nov 2013 Posts: 6 | She didn't really say much to me, just that it was fibrous tissue and nothing to worry about. I asked her if my white patches would come back and she said maybe. She didn't say anything about follow ups. She didn't seem to think I needed to worry about it anymore, it was just weird to me that the spots came back thicker than before and there's no explanation for it. Do you think I should have her look at it again?
Ashley, 26 years old, female, biopsy 12/16/13
| | | | 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 | I would get another opinion. All to often we see things like this end up as cancer. Certainly I'm not a doctor but if it was my mouth I would keep getting appts until it made sense to me.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I'm going to agree with david. Sometimes age and no precursors means the drs. kind of just blow you off. My first one did. He just assumed because I was healthy with no bad habits that OC couldn't happen to me. WRONG. Anyway. I would want a reasonable explanation for what is going on. And I would keep an eye on the area for pain and redness. A lot of cancers are painless. However, because the tongue is very nervy, and muscular, it can become painful quickly if it is a tumor. Hugs.
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
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