| | Joined: Sep 2010 Posts: 1 Member | OP  Member
Joined: Sep 2010 Posts: 1 | Hi, I was diagnosed with SCC of the right tonsil with spread to one lymph node in neck in March, 2010. Presenting symptom was bad breath and lump in neck. Had neck dissection and tonsil removal in April. Started radiation and erbitox treatment in May with several complications. Finished in July. Now awaiting PET scan in October to see if cancer is clear. Just learning now about the probability of recurrence. This is pretty scary. My SCC is related to HPV-16. Anyone know where I can look at survival stats for this particular strain. Thanks. Marianne West Chester, PA | | | | | 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 | Sorry you had to go through all of that but if your cancer cells tested positive for HPV then your 5 year survival rates are estimated to be around 80%. Where were you treated?
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: 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 | You shouldn't be concerned with statistics. Especially in HPV+ oral cancers. There are so few institutions collecting data on this right now, and it has taken a long time (10 years) to get them all up to speed doing so, that early cases that were positive, were not even reported as HPV associated. So the data on this will be murky for a few more years. Trust that your survival advantage over tobacco oral cancers has been proven in a study that OCF and NCI funded and published in NEJM. Try to live each day fully without worrying too much about the "what if's" and numbers that may not apply to you. We are all unique biological entities and there is no absolute number that will, without question, apply to you. You are one of the lucky ones.... go out and enjoy, live, prosper, thrive.
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF, Marianne. I do not even look at statistics. I would be upset to see that I really should not be here but still am. Ive gone thru OC 3 times in 3 years and finally hit my 1 year anniversary of being cancer free.
Im glad you found this site. It can be very helpful and reassuring to know you arent alone in this. Recovery can be a long process. Hope you are feeling pretty good by now.
Im also in PA, Im north of you in Allentown. There are a bunch of us from this general area. In fact Saturday there is a walk in Andover NJ and another OC walk in Bethlehem the following Sat. If you have the time it is really wonderful to meet other survivors.
Best of luck next month.
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Maybe I missed the post but shouldn't a 12 month anniversary be the cause for lots of bells and whistle blowing? Especially if that anniversary belongs to someone who has taken on OC 3 times?
Sorry to hijack your thread dranismom, but I am sure you will forgive me when you get to know ChristineB a little better.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Marianne Searching for meaningful statistics is something that every Cancer patient does. We all want some kind of answer to the burning question of our mortality that has suddenly become so concrete and immediate. Like Christine, I don't like the "official statistics" since they indicate my planned lifespan would be an anomaly. I have an additional reason to dislike statistics - my tumor both times was HPV 16+. Yet HPV tumors generally don't come back but die with the TX. Rubs salt in the wound that I can't get any satisfaction from statistics Klo, Actually, my ENT surgeon and RO both indicated that a one year anniversary for those of us who suffered a recurrence is hardly out of the woods. Those damn statistics all say 18 months is a far better milestone since cancers that recur are radiation & chemo resistant. We all wish Christine the best and every day she remains Cancer free is indeed cause for celebration but since we're talking numbers here - it's always bleaker for those of us in the recurrence club.
Last edited by Charm2017; 09-23-2010 06:27 AM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Marianne, welcome but sorry you have to be here with all of us. We are practically neighbors as I live in Media. My daughter lives in West Chester. Where were you treated? Each of us is a statistic of one so try not to read into all the crap out there on the internet, it will drive you crazy. You have found a great site with great support and lots of information.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Marianne, You might want to review at the current RTOG-0129 and ASTRO-TAX324 findings: http://www.rtog.org/press/2010June07.htmlhttp://www.asco.org/ASCOv2/Meetings..._view&confID=74&abstractID=40813ASTRO findings for Overall & Progression Free Survival were: OS* HPV+ N=56 HPV- N=55 1-yr 93% (82-97) 69% (54-79) 2-yr 89% (78-95) 48% (34-61) 3-yr 87% (75-94) 41% (28-53) 5-yr 82% (69-90) 35% (23-48) PFS* 1-yr 85% (73-92) 52% (38-64) 2-yr 83% (70-91) 35% (23-48) 3-yr 81% (68-90) 33% (21-46) 5-yr 78% (64-87) 28% (17-40)
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | 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 | With respect to DonB, I still believe that the data is incomplete and preliminary, and your milage may vary. The ASCO meeting presentation by Dr. Posner (a friend) was drawn from 260 some people, that were not sequential patients, and located at one institution. Out of approximate (best guestimate) 16,000 HPV oral cancers last year, no one knows if in 5 years from now the numbers from the one institution experience of 260 people is relevant. We just do not have enough institutions collecting and reporting to have a really secure hold on what the numbers are. In spite of the Gillison Ang paper, Gillison routinely says that there is definitely a survival advantage, but cautions that until the data is repeated at more institutions we won't have an accurate prognostic indicator for several years to come. Too many institutions are not even separating HPV+ patients in their numbers
Last edited by Brian Hill; 09-23-2010 06:24 PM.
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 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Brian, Any comments on M. Gillison's presentation at ASTRO on the Analysis of the effect of p16 and tobacco pack-years? Am I understanding correctly the she is saying to deduct 1% from OS (or PFS?) for each year of tobacco smoking regardless of HPV status? Abstract seems confusing! If so, wouldn't it matter how long ago one quit? also is abstract saying HPV+ (p16) had greater rates for secondary primaries (13% vs 11%) and nearly same distant metastases (11.1% vs 13%)? Thanks Abstract (only): http://www.asco.org/ASCOv2/Meetings..._view&confID=74&abstractID=42843
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
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