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
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?
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.
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.
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.
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.
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.
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)
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
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
This is what I call the fallacy of statistics:
You may have a 600,000-to-one chance of getting hit by lightning, but if you get hit, you're 100%. The best thing you can do is take care of that 100% - you.
The math makes no sense, but what I mean is that you are important - not the numbers.
Marlene
We seem to ask the same questions, I asked her this last week. Her answer was that in almost all patients there are collateral issues that dictate their place on the overall survival curve. Clearly tobacco use diminishes overall health, and impacts our bodies on a cellular level systemically. So that is a biggie. But when you look at any cancer patient, things like age, cardiovascular health, diet, etc. etc. (enter long list of things that we have done wrong, we're doing wrong, co-morbidities, or are just part of our genetic make up) move a particular person up and down the curve of overall survival. Pack years of smoking in this particular study, but likely in all studies that look at survival, diminish it. For sure years out from those pack years help, but they do not wipe it out. It was looked at in this study specifically because of it's enormous impact. But on a positive note that impact was not enough to completely diminish or eliminate the survival advantage of HPV+ status.
Maura crunches numbers because that is the didactic norm to prove something. But I think as a treating physician, which she is besides being a researcher, that her beliefs are less like her papers. She fully understands in my opinion (knowing her some) that individuals are all unique in their response to treatments even with the same etiology, and absolutes are not possible in cancer. A saying that I use all the time, but which she drilled into my science nerd mind 10 years ago. Since trying to wrap my rather small mind around this disease for ten years, the one thing that I have had to come to accept is that for every science or evidence based expectation, there is someone with an exception. Hence my tendency to not speak of things in absolutes in my lectures regardless of what the SEER numbers, a particular study etc. say.
[quote=DonB] is abstract saying HPV+ (p16) had greater rates for secondary primaries (13% vs 11%) and nearly same distant metastases (11.1% vs 13%)?
http://www.asco.org/ASCOv2/Meetings..._view&confID=74&abstractID=42843[/quote]
HI Don
Just to answer your questions about the incidence of mets and secondary primaries:
It is important to look at the p value (statistical significance) to see if the figures mean anything. You will see it in brackets after the figures you quoted eg (p=0.4). The value needs to be less than 0.01 or 0.05 depending on how stringent the trial is (and where you went to school) to be taken as a real difference.
A value more than 0.05 is described as "not statistically significant".
In English, it means it would not be reasonable to suggest one patient group fared better than the other as the numerical differences are too small (believe it or not) and could be due to chance. This happens when there are genuinely no real differences or when there are not enough patients/events being measured in each group to discern a difference.
The best conclusion that can be drawn in this instance is that there is no difference between the groups, although I suspect in this case it is likely to be that there are just not enough patients to measure any differences. What it definitely does NOT say is that the HPV+ group fare worse in these measures than the HPV- group even though the numbers may appear greater.
Hope this helps and sorry to the statisticians who are right now bouncing up and down in indignation over the superficiality of my explanation
Karen
oooohhhhh...opening up the "statistical can of worms". Brian had great advice...don't focus on the numbers, just live. I'm a numbers guy, love them and had always thought that numbers would give me the information I needed to make the right decisions in life and business.
When I got cancer, I kept asking for statistics, which for my diagnosis wasn't good, and not one of my Dr's would tell me. Then my RO put it to me the clearest way possible. "Eric, it's either 0 or 100%...you are either going to make it through this or you are not."
I mean if you really want to get into numbers...Brian said only 16000 people are diagnosed with hpv + oral cancer a year...out of about 300,000,000 people in the US. That's lottery statistics there (scratch games
)...just not the kind of lottery anyone would ever want to win (sorry favorite quote from a friend). Now what really blows my mind when I think about my situation is that I'm hpv neg, never used tobacco (ever) and very light drinker as I'm allergic to alcohol (mildly)...what are the statistics on that? Did it matter in my situation? Nope.
When it comes down to it...just live, to the fullest and if a recurrence happens, deal with it then. There are many on these boards, hero's of mine (Christine and Charm) that have had multiple recurrences and are still around to tell the tale and help others along this crazy path. They are living proof that an oral cancer diagnosis and multiple recurrences are not a definite death sentence.
Eric
Sorry to disagree with the non numbers people but my daily life has always involved numbers and statistics and I would feel more comfortable knowing that some creditable study concluded that I had a large vs small percent chance of something non negative happening to me. Without these studies that produce these valuable statistics medical science and just about anything else would not progress, absent shear luck.
I'm not as sanguine as DavidCPA about a causal effect between statistical studies and medical progress. Doctors are just persons like us with a medical degree and subject to the same human foibles. Take for example all the cardiologists who still insert stents despite all the clinical studies showing no better results than taking inexpensive statins. You'd think a non surgical TX that works as well or better than surgery would be standard, but since that's not what they learned in med school, thousands get unnecessary surgery.
Same thing for prostate cancer. Research is what produces progress, these studies are just attempts at proof of efficacy.
My doctor's were not as direct as EricS' in pointing out that your personal statistics are always Zero or 100%. Instead they would say that maybe I would be in the 30% that did well with my prognosis. Yet I heartily agree with DavidCPA that there is a lot of comfort in statistics that predict a good result for you. Even now, I cling to the "magic" 18 months without another recurrence that has upped my stats.
One thing I think all of us here at OCF would agree on is that we would have preferred to win the Powerball jackpot lottery than the oral cancer lottery. (note deleted statistics on those odds after further research - no confidence in the ones I posted)
I was advised by one of my Doc's to hope for the best, but plan for the worst.
I can't say I have totally followed his advise, but I certainly respect it and I find I don't put off opportunities to enjoy living life like I used to.
Some people are overly optimistic, others are excessively pessimistic and many just try to be realistic.
On this journey, there have been times when I have been all of these and I know it is a long journey still; but then there are years of adventures I hope not to miss that are still left on my bucket list.
I am with DavidCPA
Without statistics I would not have known that chemo in conjunction with radiotherapy is better then radio alone or that adding docetaxol to cisplatin and 5FU to the induction chemotherapy improves my Alex's chances too. We were also armed and ready for the side effects of radiation and were able to celebrate that he was a mess for a mere 3 weeks instead of the average 7!
Bring on the statistics, let me know what we are up against so we can fight with everything we've got!!!
....and again, sorry to dranismom for hijacking your thread.
Karen