"Total Metabolic Response to Treatment" :: but questions about recurrence

Captain Australia
Captain Australia Member Posts: 21
in Head and Neck Cancer #1

I'm a guy who likes to know the numbers, although I do completely understand the opposite mindset.

9 months ago I was diagnosed with a late stage SCC (P16+) advanced to local lymph nodes.  They gave me 6 months to live.

Last week I was given the all clear, completely clear PET scan with a report indicating "total metabolic response to treatment", the doc said that I couldn't hope for a better result.

Great stuff.

I'd like to forget about cancer for a while, stop thinking about it.  Stop worrying about how my three young boys would cope with my death, and manage growing up in the world without me (it hurts doubly so because my 6 year old is autistic .. he needs me).

That death anxiety is starting to disappear.

But one nagging thing .. I don't know the stats for recurrence, and I'm finding them horribly hard to research online.

The numbers for my type of cancer was:

Base 5-year survival rate: 60%

HPV Positive +20%

Have a spouse +2%

Adjunctive Chemotherapy +2%

(or at least this is the math I found from pubmed - scholarly sources .. so in total, a 5 year survival rate of 84%)

The questions I was hoping to explore were as follows .. and I'd gratefully welcome any comment or insight.

 

1) Since I got the NED result, does that firmly sit me in the 84%, do you reckon ?  Meaning, can I reasonably expect to survive the next 5 years ?

2) Does anyone know current hard stats for recurrence for our (or any) type of cancer ?  The only thing I could find online was a vague and unconvincing reference to "10% of cancer survivors will suffer from a recurrence" and "in most cases recurrence will happen in the first 5 years following treatment".  I'd love to get some hard numbers like .. for the 40-50 year cohort (I'm 45) head & neck SCC, the rate of recurrence was 2% (meaning that of persons receiving NED, 2 in 100 had a recurrence and actually fell into the 16% bucket who didnt survive 5 years)

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Comments

  • caregiver wife
    caregiver wife Member Posts: 234
    edited June 2017 #2
    Stats...

    I am not a doctor.  I and my husband are both 2 X cancer survivors.  So, I too, have looked for all the stats.  This would be the conclusions I have come to over the years.

    Firstly, stats are averages, and do not apply to any single patient.  They are for doctors/patients making treatment choices.

    Yes, you would be in the "bucket" for the 5 year survivor rates you found.

    It is reasonable that recurrence for cancer will  happen in the first 5 years.  Depending on individual treatments options/choices, and the ability to get all the cancer the first time around.  Hence the inability to find stats for longer than 5 years, too many types, stages, treatment options, condition of the individual patient, etc.

    You have already put yourself in the survivor "bucket".  Everyday you are a survivor, you put yourself closer to that 5 year mark and beyond.  Everyday you put yourself closer to putting the "stats" behind you, so it does get easier.

    Some of us who have faced the dreaded recurrence would tell you that today there are treatment options and success that weren't even dreamed of just 5 years ago.  There are great survivor stories there as well.

    In conclusion, you have responded well to your treatment.  The better you respond to the initial treatment, the better likelyhood you will get to, and pass, that 5 years cancer free.

    I, too, know the fear we face when children depend on us.

    So, as an old timer, I would say to you...

    Live for today and the future you have already given yourself.  God Bless,

    Crystal 

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #3

    http://ascopubs.org/doi/full/10.1200/jco.2016.66.6081

    http://ascopubs.org/doi/full/10.1200/jco.2015.64.6448

    With all the work recently on developing new cancer staging for HPV+ disease there have been a ton of retrospective analyses on this.  Depends on a multitude of factors such as whether you are a smoker or whether you had any high high risk features and such...  

    Data on recurrence is much harder...  But this article is pretty enlightening...  Again, depends on factors such as # of lymph nodes involved, size of lymph nodes, what level the lymph nodes were, treatment type.  Recurrence also most often appears within 6 months according to this.  Looks like overall recurrence was 16%

    http://www.ascopost.com/News/36315

    I'm 42 and was diagnosed 6 months ago.  3 young children myself.  I too like #'s and I now read and read and read on this crap.  But I agree in general that these #'s are just "averages" and each persons individual situation/health status, etc... can't be summed up by a single #.

  • soonermom
    soonermom Member Posts: 155
    #4
    Total Metabolic Response to Treatment

    If we ever hear those words, I will have a party.  You are so blessed to hear those words.  Getting to a cure has to start somewhere and you are beyond blessed to have this start on your journey to NED.  

  • Bobby_Lee
    Bobby_Lee Member Posts: 25
    #5
    Sadly you just cant tell.

    Sadly you just cant tell. Make every day count and dont worry about tomorrow.My case is similar to yours. I had SCC in 4 different spots when diagnoses. Treatment was rough. I was given the max dosage of radiation with Chemo and surgery. It took a year to recover and another 6 months before I was cleared. No sign of cancer for 3 and a half years and then Boom! Leison on roof of mouth. I pray you dont get it again but have seen people on forum going to bat 3 times now.

  • Captain Australia
    Captain Australia Member Posts: 21
    edited June 2017 #6
    Bobby_Lee said:

    Sadly you just cant tell.

    Sadly you just cant tell. Make every day count and dont worry about tomorrow.My case is similar to yours. I had SCC in 4 different spots when diagnoses. Treatment was rough. I was given the max dosage of radiation with Chemo and surgery. It took a year to recover and another 6 months before I was cleared. No sign of cancer for 3 and a half years and then Boom! Leison on roof of mouth. I pray you dont get it again but have seen people on forum going to bat 3 times now.

    Sorry

    Sorry to hear about the recurrence, brother - best of luck.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #7
     “total metabolic response to

     “total metabolic response to treatment" -- boy you Brits are windy bunch

    You're confusing your statistics a bit, and past is not necessarily prolog.  First, reject Determinism:  Understand that you have the capability to help affect outcomes thru personal action.  Next, the realities behind the stats you are referencing are dynamic - they change over time.  Protocols that were less successful from two decades ago are still bundled in those numbers.  Those numbers also don't have much to do with numbers that will be measurements of changes that will be coming.   One of the most important things I learned during a career doing statistical analysis ->  "The reason the world is round is so no one can see to the end of the road".

    The one stat I do have confidence in is the proportion in the eternal ratio 44:12.  Which is, of course, the number of times the All Blacks have won the Bledisloe over Oz.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    edited June 2017 #8
    A great poet once said




    ...

    "But Mousie, thou art no thy-lane, 

    In proving foresight may be vain: 

    The best laid schemes o’ Mice an’ Men 

              Gang aft agley, 

    An’ lea’e us nought but grief an’ pain, 

              For promis’d joy! 

     

    Still, thou art blest, compar’d wi’ me! 

    The present only toucheth thee: 

    But Och! I backward cast my e’e, 

              On prospects drear! 

    An’ forward tho’ I canna see, 

              I guess an’ fear!"

     





     
  • Captain Australia
    Captain Australia Member Posts: 21
    #9
    Thanks anyway

    I appreciate that responders think they're imparting insight, but it's not what I asked for nor in any way helpful to me.

    Let's discontinue the thread, I'm not getting anything productive from it.

    Thanks anyway.

  • Andy13460
    Andy13460 Member Posts: 115
    #10
    Stats

    IThink if my first scans are clear after treatment which ends next Wednesday.  SCC base of tongue T2 :N1:M0 HPV16+.     I'm going to stop reading stats I have no control if and I  can waste hours every day doing this, be as healthy as I can an do plenty of things that make me happy. Fate & Destiny can look after the rest. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #11
    statistics

    CA,

    You have probably already located your statistics.

    Happy NED.

    Matt

  • swopoe
    swopoe Member Posts: 492
    #12
    Captain Australia said:

    Thanks anyway

    I appreciate that responders think they're imparting insight, but it's not what I asked for nor in any way helpful to me.

    Let's discontinue the thread, I'm not getting anything productive from it.

    Thanks anyway.

    That's not entirely fair.  My

    That's not entirely fair.  My husband was just shy of 41 when diagnosed with stage 1 tongue cancer in October 2015. We also have 3 young kids (ages 7-13 now). Believe me, we all need my husband in our lives. My husband and I are both scientists. He works with data and modeling all day. I am a math nerd. But what we have learned through cancer is that the statistics really only tell you so much. They will not give you the entire picture. I think that is what everyone he is trying to tell you. My husband's doctor, the most respected here in Houston, said that most recurrences are in the first year. Then you want to get through the second year. For us, we are at almost 21 months. My husband had a NED scan last week. We are extremely happy. We Aren't thinking about stats. We just can't. They won't tell us anything that we don't already know. My husband is alive today. He will be tomorrow. And next week. And next month. And he is going to live his life.  And we are going to be happy and grateful because there is no other way to be. And you should too.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #13
    swopoe said:

    That's not entirely fair.  My

    That's not entirely fair.  My husband was just shy of 41 when diagnosed with stage 1 tongue cancer in October 2015. We also have 3 young kids (ages 7-13 now). Believe me, we all need my husband in our lives. My husband and I are both scientists. He works with data and modeling all day. I am a math nerd. But what we have learned through cancer is that the statistics really only tell you so much. They will not give you the entire picture. I think that is what everyone he is trying to tell you. My husband's doctor, the most respected here in Houston, said that most recurrences are in the first year. Then you want to get through the second year. For us, we are at almost 21 months. My husband had a NED scan last week. We are extremely happy. We Aren't thinking about stats. We just can't. They won't tell us anything that we don't already know. My husband is alive today. He will be tomorrow. And next week. And next month. And he is going to live his life.  And we are going to be happy and grateful because there is no other way to be. And you should too.

    And medicine is not standing

    And medicine is not standing still.  I expect in the next couple of years I will read an article in some science journal that says they found a way to turn off the wild replication of HPV cells.  Instead of 35 IMRT/7 chemo people will take pills for a couple months.  With the innoculation they have for HPV now they have to be getting close.  It frustrates me that the word on that inoculation is not more wide spread.  If you are under 25 today there is no reason to ever go thru this.

  • Captain Australia
    Captain Australia Member Posts: 21
    #14
    Seeking information

    I don't mean to come across as a ****, and I don't mean to offend:  but for the most part your responses are for you, not for me.

    I didn't ask for your preferences regarding stats, or to declare your wisdom to the world as cancer survivors, to write me poems or to call me british (Australia isn't part of Britain, although it is part of the commonwealth, like Canada and New Zealand)

    The thing about surviving cancer - it doesn't qualify any of us to suddenly become Zen Masters.  Our new insights are deeply personal and largely relevant only to ourselves, because each individual has their own makeup, experience and preferences.  We've just had the bad luck to join a club nobody wants to enter, and the fortitude, luck or personal strategies to get through it so far.  But we are different, have different preferences, and if you think your preference about avoiding stats is somehow wiser or more insightful than my preference to know them ... sorry, but you're wrong.

    Please respect mine instead of just pissing on them as irrelevant or stupid ?  I want the numbers.

    If you can't help, that's OK - but let's just discontinue the thread.

  • Captain Australia
    Captain Australia Member Posts: 21
    #15
    To clarify my interest

    I'm interested in mortality rates in the post-treatment phase, ideally broken into cohorts (age, smoker, non-smoker, drinker, etc), and including insight into recurrence numbers (ie for persons who were given the all-clear but experienced later recurrence or new cancer in a different location)

    If I can't get general numbers, then curious to get numbers directly relevant to me - sufferers of SCC head & neck (tonsil), mid 40s, HPV P16+, successfully treated with chemoradiation, given all clear, percentages of recurrence into year 1-5 and beyond.

  • Engelsa
    Engelsa Member Posts: 50
    edited June 2017 #16
    A link

    http://www.ascopost.com/News/36315

  • Engelsa
    Engelsa Member Posts: 50
    #17
    Another link

    https://www.google.com/amp/s/consultqd.clevelandclinic.org/2016/04/recurrence-survival-new-implications-hpv-positive-oropharyngeal-cancer/amp/

  • caregiver wife
    caregiver wife Member Posts: 234
    #18
    Seeking Information / To clarify my int / To clarify my answer

    from my original post:

    1. "Yes, you would be in the "bucket" for the 5 year survivor rates you found."

    2. "... Hence the inability to find stats for longer than 5 years, too many types, stages, treatment options, condition of the individual patient, etc."

    3.  If you are not looking for "preferences regarding stats, or to declare your wisdom to the world as cancer survivors, to write me poems or to call me british" then you obviously are looking in the wrong place for your answers.  You are on a support group page for persons going through cancer/survivors of cancer sharing their PERSONAL experiences in SUPPORT of EACH OTHER.

    4. "I don't mean to come across as a ****" "and if you think your preference...  ... sorry, but you're wrong.  Your response speaks for itself.

     

  • Engelsa
    Engelsa Member Posts: 50
    edited June 2017 #19
    Another link

    http://www.curetoday.com/articles/predicting-hpv-oropharyngeal-cancer-recurrence-with-novel-biomarker

  • Engelsa
    Engelsa Member Posts: 50
    #20

    Hello Captain America,

    Dr Matthew Spector is a brilliant scientist and surgeon. We met him during my husbands treatment at the University of Michigan. They have a group that only treats head and neck cancer patients. Much H&N research is done at this school.

    My thought is that you may be able to find some relevant statistics by researching studies performed at H&N centers within the US and Europe. Many of these H&N centers cooperate together to perform clinical trials.

    I found the clinical trial data contained all of this information. 

    I hope this helps.

    Sara

  • Jill999
    Jill999 Member Posts: 18 Member
    #21
    https://csn.cancer.org/discussion/comment/1585726#Comment_1585726

    I'm had my first treatment for metastatic head and neck with prembro chemo akl148 will let you all know that goes

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