| | Joined: May 2013 Posts: 63 "OCF Kiwi Down Under" Supporting Member (50+ posts) | | "OCF Kiwi Down Under" Supporting Member (50+ posts)
Joined: May 2013 Posts: 63 | Hi Kirsten Such a tricky thing to deal with. Mine had spread to my right neck nodes and they picked up maybe 4-5 on scans (ultrasound and CT) so did a right ND. Turned out there were 9 if them so those scans obviously are that great in detecting them. I'm getting rads and chemo now to zap whatever's left but have also been given the all clear by a PET CT scan now too which is the best for picking up any small malignancies. Mine was HPV+ and BOT. In your shoes I'd definitely do radiation since it zaps the microscopic bits and ask a lot more questions. Have you had a Pet scan? Good luck in this difficult decision. Mel.
2013 - 39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished 30 rads & chemo (cisplatin) stopped after 1 round due to hearing loss
May 2015 - left supraclavicular swollen lymph node & area - CT planned 9 May
| | | | | 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 | You said "aside from having the HPV virus", are you saying that you had/have HPV as a result of a Pap smear and because of that you think your oral cancer is HPV related?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | No, the HPV thing came out as part of the biopsy results.
Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | OK so they did test your oral cancer slides for the presence of HPV and determined it was positive.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2010 Posts: 5,264 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 | Very odd but anything is possible I suppose. This disease is a conundrum 
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: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | Totally. I think that is why the docs are confused. I "shouldn't" have this, so they want to treat to kill stuff just in case, even if there isn't a clear need, like the lymph nodes being fine on the scan. I am glad I can read here to get more information. It at least enables me to understand what they are saying, and not saying.
Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
| | | | | Joined: Sep 2011 Posts: 11 Member | | Member
Joined: Sep 2011 Posts: 11 | I don't understand why the surgeon did not discuss the option of possibly doing a
neck dissection at the time they found out extent of tumor
when they did the tongue surgery so you would not have to go back twice.
Regardless I would consider the neck dissection option only at this point.
Make your surgeon is EXPERIENCED with this kind of surgery.
I first went to a very fine ENT capable of surgery but was not a cancer specialist.
He was going to only remove the tonsil then I'm guessing after the biopsy recommend
radiation and/or chemo.
Subsequently I went to a cancer specialist who did the surgery to remove my toncil and included a ND .
Get a specialist cancer ENT surgeon.
Last edited by bidask; 07-21-2013 04:44 PM.
| | | | | 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 | Definitely look for someone preferably at a CCC - because they deal with this cancer all the time - and I agree, the neck dissection and tumor removal should have been done at the same time - the neck dissection isn't that bad a surgery just a lot of swelling and numbness and some drains for a few days. Hugs
Last edited by Cheryld; 07-22-2013 05:44 AM.
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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