Reoccurrence Rate? HPV SCC Tonsil Primary

JGavin
JGavin Member Posts: 14
in Head and Neck Cancer #1

Trying to find information on the reoccurance rate of HPV SCC.  Since most studies are either, A- outdated, or B- only studied patience for 3 years post diagnososes, this leaves me wondering if there is any studies that show long term reoccurrence rate.  I ask here because I imagine some of you may have doctors who were able to offer you an idea about the likelyhood of HPV SCC coming back.  If I need to be more specific, Tonsil primary SCC with lymph node involvement.   I have also noticed that some people with SCC HPV and lympn node involvement are stage 3, while others with what seems to be the same, are stage 4.  How does that happen?  

Thank you for your time,

JGavin

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
    J

    Sorry, I don't fit in the tonsil category but I am sure others will chime in. Keep in mind that some of the older results are based on older techniques and treatments too. 

  • cureitall66
    cureitall66 Member Posts: 913
    #3

    Hi JGavin,

    My loved one was dx Aug 2012 with BOT HPV16+ w/ lymph node involment. Tx completed late November and NED in February. He was told then that he would be closely monitored every 6-8 weeks for year 1 and 2 as that was the window of recurrence. The weeks would spread out during year 3,4, and 5 and with chest Xrays twice yrly ( but we are pushing also for a CT once a yr also) and if he remained NED during those years he would be considered cured.

    I don't know where to send you for any updated statistics. I believe there has been a tremendous amount of improvement with technology and knowledge about this type of cancer now compared to even 5 yrs ago. More pin point radiation and PET scans that are even more precise.

    Some folks have been told 1 yr for recurrence, so it may depend on the facility of tx and the data they have and go by. Either way, it is really a good prognosis compared to years ago.

    ~C

     

     

  • Laralyn
    Laralyn Member Posts: 532
    #4
    I was told by several

    I was told by several oncologists and my research also gives the recurrance rate of about 5% for HPV+ oral cancer. I've also heard 10% but 5% seems to be the most common statistic. It's apparently more likely the first two years--if it comes back at all (i.e. you are in that 5%), then there's an 80% chance it will be in the first year, or a 90% chance it will be within the first two years.

    All of that being said, here's my personal POV on statistics. I'm a numbers nerd who does a lot of modeling of systems in my day job. I actually was one of the pioneers of using statistics in my line of work (where it's called "metrics") so I'm definitely interested in it. The thing I've realized, though, is that knowing the statistics doesn't tell you anything. You have no way of knowing which side of the line you're on until it either happens to you or doesn't. In our case, you could be in the 95% or the 5% and you have no way to know which one. It's great to hear that the odds of recurrance are only 5% but if you're ever in a situation where the odds don't sound as good, keep that in mind. There's a great article about the subject: The Median Isn't The Message. 

  • Roar
    Roar Member Posts: 269 Member
    #5
    Interesting

    I was at my oncologist today.I told him I have been reading about HPV and was wondering if I was ruled out for having it. His answer was that I was HPV positive for my SCC which had an unknown primary.i asked if it was a STD and he said no it was more like a virus that some people just have in their systems and i had only one lymph node under my chin that was affected and it was stage 4 because of the size. I had it removed.i didn't ask many questions when I was diagnosed I just knew I wanted it out of me. Wish I had known about this forum back then( last September). Anyway he tells me today that my chances of no reoccurrence are very good because of the HPV. So I don't know what to think - personally I think when it's your time to go you go. So I am not going to worry about it and i will put it in Gods hands and whatever will be will be. He also said because of HPV the first 2 years is a lot of watching and that I would be a life long patient of his.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    My Take...

    Abbreviated version...

    Like mentioned the first two years are the highest chances of a recurrence... My MD's considered you cured after that...

    My impression is that if you get cancer again after two years, it's not a recurrence, but a new occurence....

    JG

  • donfoo
    donfoo Member Posts: 1,773 Member
    #7
    Skiffin16 said:

    My Take...

    Abbreviated version...

    Like mentioned the first two years are the highest chances of a recurrence... My MD's considered you cured after that...

    My impression is that if you get cancer again after two years, it's not a recurrence, but a new occurence....

    JG

    interesting

    you been doing this a lot longer than I but my understanding of what I read is the 5 year period is the window within which a cancer can "recur". The morbity charts show that curve flattening out around the 2 year mark to the 5 year mark. So one is justified to sigh a bigger relief once crossing the two year mark. I had not read anywhere that 2 years was the timeframe that determined "recurrence"

    The there is the proverbial when does the clock start: at diagnosis, at end of treatment, or?

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #8
    donfoo said:

    interesting

    you been doing this a lot longer than I but my understanding of what I read is the 5 year period is the window within which a cancer can "recur". The morbity charts show that curve flattening out around the 2 year mark to the 5 year mark. So one is justified to sigh a bigger relief once crossing the two year mark. I had not read anywhere that 2 years was the timeframe that determined "recurrence"

    The there is the proverbial when does the clock start: at diagnosis, at end of treatment, or?

    Clock starts

    Don,

    From what I was told by my Surgeon and Radiation Oncologist is that the clock starts the day after the final treatment(s).

    My Best to You and Everyone Here

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #9
    MarineE5 said:

    Clock starts

    Don,

    From what I was told by my Surgeon and Radiation Oncologist is that the clock starts the day after the final treatment(s).

    My Best to You and Everyone Here

    I asked today

    I asked my MO this question today. She said (paraphrase from memory):

    'We'll never tell you you're cured. You'll always be a cancer survivor. The critical period is the first two years. We'll be seeing you every three months for the first two years. You'll be scoped in July and we'll schedule a PET for August. Between two and 5 years we'll see you every 6 months. You'll be scoped and scanned on the same schedule. At 5 years we won't need to see you anymore.'

    "T"

     

  • donfoo
    donfoo Member Posts: 1,773 Member
    #10
    fishmanpa said:

    I asked today

    I asked my MO this question today. She said (paraphrase from memory):

    'We'll never tell you you're cured. You'll always be a cancer survivor. The critical period is the first two years. We'll be seeing you every three months for the first two years. You'll be scoped in July and we'll schedule a PET for August. Between two and 5 years we'll see you every 6 months. You'll be scoped and scanned on the same schedule. At 5 years we won't need to see you anymore.'

    "T"

     

    True that

    I had a bit of culture clash with the medical community when it came to terms, CURE vs CURATIVE vs PALLAIVE. The best I could coax from my team is they are seeking curative therapy in hope it may cure the disease. They could never come to say I would be cured.

    I do think if we have this discussion or those who crossed the five year post treatment milestone, probably have a few stories where their practitioners will loosen up and say you have been "cured" of this cancer incident. whoi knows LOL

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    HPV+

    JGavin,

    Yes there are studies which show long term reoccurrence rates.  Yes I did have a doctor and yes she was cute, I mean yes she told me all about staging and where I can be found under the curve.  She also tailored some information for me specifically.  After reviewing all my scans, blood work, age, attitude, the car I drove and the folks I hung out with she felt confident that their all-encompassing plan would be a success (Halleluiah).

    We may be reduced to numbers in actuarial tables marked “cancer”, but don’t get too consumed by it.  Every day stage I cancer patients are killed in traffic accidents (some while driving to treatments).

    Check out the SuperThread about staging, once you find the correct page it is all there for you.  I made it to stage IVa by the skin of my teeth (lucky me).

    Stay informed, learn all you can, but be wise and keep proper perspective.

    100% gone,

    Matt

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