| Joined: Jan 2014 Posts: 3 Member | OP Member Joined: Jan 2014 Posts: 3 | Hello all, back in September I noticed some white patches on the left side of my tongue. It wasn't painful but my dentist referred me to an oral surgeon who set up a biopsy for early December. The results came beck negative for cancer and for herpes the surgeon said that we needed a follow up appointment and if it hadn't gone away he might do another biopsy. Now here it is January and the white spots are still there. I have also noticed that my left ear has a weird feeling like there is a build-up of pressure, almost like my ear needs to pop but it won't (been about a week now). There has also been pain on the left side of my tongue where the spots are that wasn't there before. I was just wondering what some of your thoughts were on all of this. I dont go back for my follow up appointment for another 2 weeks and Im starting to get nervous. Thanks! | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | I would go to your GP and ask for a referral to an ENT with experience in Oral cancer - this is where you need to be. Chances are this is not cancerous, however, you want to be monitored by someone who knows their stuff and is familiar with oral cancer in the early stages. Do it asap. particularly not that you are having pain. hugs and best of luck
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: 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 | Change the appt and get in there now.
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: Jan 2014 Posts: 3 Member | OP Member Joined: Jan 2014 Posts: 3 | Thank you for the advice. Im new to this and not even sure if its possible for it to have turned into cancer in only about a month but I had read that a few people have had a biopsy that came back negative and then when retested came back with cancer. So after reading that I have become a little more nervous. | | | | Joined: Dec 2011 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2011 Posts: 126 | I agree you should get a follow up - i saw an ENT when I had a white patch on the bottom side of my tongue, who said it was just leukoplakia (an auto-immune thing) so I didn't worry about it. It came and went for a while, then eventually a red bump formed in the same area, which I really didn't even notice. When it started getting really painful I finally followed up about it a year later, and it was stage 3 - the oral surgeon i went to was able to diagnose me on the spot. I don't mean to scare you as in my ENT's defense it was highly unlikely for it to turn into cancer at my age; however, I have a lot of regrets to this day about not following up sooner. The cancer can grow very fast so the sooner the better!
Emily - 24 years old at diagnosis HPV-, no risk factors T2N2b Squamous Cell Carcinoma Left oral tongue, poorly differentiated Hemiglossectamy, reconstruction, partial neck dissection 30 Radiation treatments, weekly chemo (cisplatin) 1/13/12 last day of treatment Diagnosed October 2011
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Time frame on cancer - I know drs say... no... it won't move that quickly. That's crap. We are highly metabolic creatures... daily cells die, multiply, and grow. The speed at which all this happens is determined by many things. Biology, DNA, diet, exercise, age, overall health etc... Why do younger people diagnosed with cancer tend to have more of a fight on their hands and have a more aggressive cancer? Because they generally function at a higher metabolic rate.
Some forms of the same cancer can also be more aggressive. So despite what they say... yes. things can change in a month. The older members of this forum have heard this story from me before.
Had my Biopsy - dec 10. - diagnosis - cancer - dec 20 - CT - head, neck and chest dec 21 (no spread - the cancer was localized) I was away after christmas - sitting at a table in a restaurant just before new years (dec 28th) I felt a lump under my chin. It was the size of a small egg. MRI Jan 6. still clear - even though I could feel the lump. Feb 4 surgery day. they removed my tumor (tongue) and 40 lymphnodes - one - was positive for cancer (the lump under my chin) and it had broken through the node into the surrounding tissue.
ANYTHING CAN HAPPEN... and time is always important when you think you are dealing with cancer...
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
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Yes, Amanda I agree. I was originally put off 3 times until I went to the right person. Saw my surgeon on August 13, and from then to Oct 11 (my surgery) it had grown from 3 cm to 5.5 cm. Had they caught it March (5 months earlier when I first complained), I might have been able to have it excised rather than losing more than half of my tongue.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Jan 2014 Posts: 3 Member | OP Member Joined: Jan 2014 Posts: 3 | Thank you all for your advice and the responses. I got my appointment changed and when I went in the oral surgeon didnt seem too worried. He scheduled me for another follow up in march and said that if it (white patches) was still there I would need to get another biopsy. Since I saw him I have noticed a small (not much bigger than a pea) white bump near the white patches and where my first biopsy was. It isn't really raised up/sticking out much but it is hard. I dont want the surgeon to think im crazy if I call and ask for another appointment before march, but I have also heard a lot about people regretting not getting a follow up sooner. | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | When there's uncertainty, getting a second opinion can be very helpful. In your shoes, I would just for peace of mind.
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Ditto what mamacita said.
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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