| Joined: Apr 2012 Posts: 9 Member | OP Member Joined: Apr 2012 Posts: 9 | Thanks all for this wonderful forum.
My name is Ananth and I live in Davis, CA.
Was diagnosed with SCC Stage 1(lower right side of tongue) after an excisional biopsy(0.35 mm invasive SCC), clear margins. April 2012.
Now there appears to be a small lesion near the original site. I have a CT scheduled next week and we're going to excise this one as well.
Has anyone had similar symptoms? What's the prognosis if the SCC returns within 6 months of surgery? Much worse than usual?
Thanks in advance. | | | | 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 | Yes - unfortunately drs, excise say we got clear margins and leave it at that. This can be costly time wise as they can't see if there is any microscopic cancer left - it's rare - the do this and don't have a recurrence - at least from what I've read and seen. I get that they prefer to do minimum damage - but people tend to walk away thinking they've dodged a bullet only to face another lesion and possible lymphnode involvement - which can be dangerous if the cancer is agressive. great you caught it early. Keep an eye on your neck and hope its not a recurrence... Welcome - and sorry you have to be here!
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: Apr 2012 Posts: 9 Member | OP Member Joined: Apr 2012 Posts: 9 | Thanks, Cheryl...
I'm hoping it's not a recurrence.
Part of it is my history(I've had a tongue lesion atleast for 8 years prior to the April 2012 excision, 4 previous punch biopsies were negative)...
Fingers crossed... | | | | 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 | Welcome to OCF! Best thing you can do is to be vigilant in watching for changes in your mouth and getting checked out when you see something that isnt right. I would suggest you calling your doc and getting int there ASAP to get a biopsy done. the rule goes like this ... any sore that has been in your mouth for 2 weeks or longer needs to be checked by a professional. As a OC survivor you should be able to get into your doc quickly and hopefully they will do a biopsy right away. You should not have to wait until Oct to be seen.
Unfortunately it can happen. It happened to me. I finished rads w/ chemo got clean scans and 7 months later I found a teeny tiny white spot almost exactly where my original tumor was. A biopsy confirmed SCC.
What was the lesion on your tongue that you had there for 8 years?
Best wishes!!!!! 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 | | | | Joined: Apr 2012 Posts: 9 Member | OP Member Joined: Apr 2012 Posts: 9 | Thanks Christine!
The docs weren't sure of my pre-SCC(about 8 years) lesions other than leukoplakia....
I'm going to try and schedule my biopsy ASAP, just wanted my CT done so that we can have a baseline... | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Ananth, get a biopsy done as soon as possible. And, probably go for PET/CT rather than CT alone. Since you were T1Nx initially with well differentiated tumor and you did not have multimodality treatment, you should have good prognosis. Wish you all the best, it may be just like your previous negative biopsies. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Apr 2012 Posts: 9 Member | OP Member Joined: Apr 2012 Posts: 9 | Eshwar, Thanks.
I'm not entirely clear why a PET/CT wasn't ordered and only a CT, possibly due to my small tumor size initially(0.35mm) and due to cost concerns...
My CT results are back, but my surgeon is out of the country and I'm meeting him next Tuesday(Oct 2)....
2 things of concern for me: 1. The largest lymph nodes they've noted are 13 x 5 mm and 10 x 6 mm. The report also notes similar smaller lymph nodes(peri/sub cm).
2. A 2.5 mm lung nodule.
Here's the report synopsis: 1. STATUS POST PARTIAL RIGHT GLOSSECTOMY. NO DISCRETE MASS OR SOFT TISSUE FULLNESS IS APPRECIATED IN THE RIGHT TONGUE OR RIGHT FLOOR OF THE MOUTH. 2. SUBCENTIMETER LYMPH NODES IN THE NECK AT LEVELS 1B AND 2. 3. 2.5 MM NODULE AT THE RIGHT LUNG APEX. RECOMMEND A DEDICATED CT CHEST FOR COMPLETE EVALUATION OF THE THORAX.
I'm going to keep calm till my surgeon returns(he basically sent an EMR message from Argentina where he is right now) saying it's unlikely to be mets and that he hasn't seen the slides, only the report.
Anyway, fingers crossed and hoping for the best...
Last edited by ananthd; 09-28-2012 08:18 AM.
| | | | 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 | Honestly I wouldn't wait see if you can get them at least to schedule the chest ct for you now The nodule could be anything but move on it quickly regardless. If you haven't had radiation or chemo there is always the potential for microscopic cancer left in the nodes - once its there it can spread. Even if it shaves just a few days off your wait time it's worth it to call and have them set up the next scan. - going to see the dr is great but he'll likely have you in go over the findings and have them schedule a ct anyway - get the jump on the process. If its not met sthen great less time worrying if it is you've save yourself some time and a wait ps cts results are usually available in 2 hes.
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: Apr 2012 Posts: 9 Member | OP Member Joined: Apr 2012 Posts: 9 | Thanks, Cheryl. This is exactly the question I asked my surgeon, should I schedule a chest CT before he returns. This is his reply:
I am in Argentina w very bad Internet connection. I have seen the report but cannot view the images. I am sure the words in the report have been very scary but I would not get too concerned until I have a chance to see them when I return. Regarding the chest ct. I would also like to see the films but for such a small tumor it is very unlikely to be a tumor in the chest. I hope his helps a little.
I'm not sure what I want to do now! | | | | 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 |
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.
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