Another Biopsy?

ditto1
ditto1 Member Posts: 660
in Head and Neck Cancer #1
Cancer Team wants another biopsy to see if they can confirm HPV+, not sure why it was not determined with 1st biopsy which confirmed SCC. My question is do I really need to know if its HPV+ and what does it mean if its not? I understand reading blogs HPV seems to have good results, but unless I missed it, it seems the treatments RADS/Chemo etc pretty much is the same. Trying to get a heads up before tommorrow so I can decide if I will authorize the 2nd biopsy. Not trying to be a Doctor, but seems like this may be unnessary.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    I've had some HPV questions today also
    I would error on the side of knowledge. Your personal knowledge as well as advancing the overall knowledge of this disease so that someday you won't be asking those questions. I think you should get the biopsy, it's not all that invasive or painful in the scheme of things. The treatment protocols have been the same traditionally but now some clinicians/hospitals are adopting a less aggressive approach for HPV cases. This could come into play further down the road in decision making?? An HPV positive is also going to cause you to evaluate your personal sexual practices and may also influence your option for an HPV vaccination after treatment which was discussed here last week on a separate thread. I am learning that this can be a very complicated cancer. Get the test now as there currently is no HPV test that can be done on men after the tissue is lost that is credible. (I looked at your profile but could not determine your sex?)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Thoughts
    I think your thoughts are pretty much right on....

    As far as I've seen and from my experience on here, there is no difference in treatment.

    There have been a few discussions of possible lesser aggressive treaments for HPV derived. But I don't think I'd want to take a lesser approach at this point with limited studies or results.

    So other than knowning for sure if it's HPV derived, in the long run, it doesn't really matter.

    The thought is that HPV derived responds well to treatment.

    If you have a high history of smoking you're probably more a non-HPV candidate, LOL.

    But, my disclaimer...I'm not a MD or trained professional, and this is purely my thoughts and opinions.

    BTW, I agree, I don't understand why they don't have enough tissue from the original biopsy? I know when they took my tonsils, they confirmed SCC that night and staged it STGIII. Then sent the tissue off and a few weeks later it came back HPV+.

    JG
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    ratface said:

    I've had some HPV questions today also
    I would error on the side of knowledge. Your personal knowledge as well as advancing the overall knowledge of this disease so that someday you won't be asking those questions. I think you should get the biopsy, it's not all that invasive or painful in the scheme of things. The treatment protocols have been the same traditionally but now some clinicians/hospitals are adopting a less aggressive approach for HPV cases. This could come into play further down the road in decision making?? An HPV positive is also going to cause you to evaluate your personal sexual practices and may also influence your option for an HPV vaccination after treatment which was discussed here last week on a separate thread. I am learning that this can be a very complicated cancer. Get the test now as there currently is no HPV test that can be done on men after the tissue is lost that is credible. (I looked at your profile but could not determine your sex?)

    Good Points Splinter.....
    Ditto1 is the other half of the TheOtherDitto....He is Ditto, she is TheOtherDitto.

    Mr and Mrs Ditto if you will...
    JG
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    personally speaking
    I wouldnt. The questions to your team are only two. One: what does this benefit me? And if they cant answer that in a fashion that clearly indicates a benefit to you, then two is "who pays for it?". yes it is a complex issue, and it hasnt sorted itself out well enough that they can use this information in a fashion that clearly advances your cause. Ratface is a very good chess player, but like most good chess players, he tends to overthink things sometimes


    Pat
  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    I guess for me, it would depend on how bad I want to know...
    and I put that "I" into bold letters. Would you feel better knowing it was HPV caused (the fact that they say it's more curable)...yet it changes nothing treatment wise, would it make YOU feel better knowing. All the criteria would have to benefit me, since I'm the one under the knife.

    p
  • TheOtherDitto
    TheOtherDitto Member Posts: 58
    #7
    longtermsurvivor said:

    personally speaking
    I wouldnt. The questions to your team are only two. One: what does this benefit me? And if they cant answer that in a fashion that clearly indicates a benefit to you, then two is "who pays for it?". yes it is a complex issue, and it hasnt sorted itself out well enough that they can use this information in a fashion that clearly advances your cause. Ratface is a very good chess player, but like most good chess players, he tends to overthink things sometimes


    Pat

    The reason for the 2nd biopsy
    is because they want to see if's it's HPV+ so they can offer him a clinical trial that supposedly has better results than the current treatment. They will actually have the pathologist present when the biopsy is done to ensure that enough tissue is taken for determination of HPV status. Doug has pretty much decided that he doesn't want to be a guinea pig when the current treatment seems to work just fine. The only benefit to another biopsy and finding out if it's HPV+ is I think it would give us a little peace of mind to know that the chances of recurrence is next to nothing; whereas if it's not positive you would always wonder/worry when/if it will rear it's ugly head again. We have 3 appointments scheduled for tomorrow: 9:00 at the dentist; 10:30 at the ENT surgeon for 2nd biopsy and discussion; and 2;45 with the radiation oncologist. We have an appointment on Tuesday 5/8 at 10:45 to see the chemo oncologist. Then the only things we should have to meet about would be the feeding tube - which Doug is leaning away from, and the port for chemo. Hopefully we can get on this bus when it comes around the week after Mother's Day. Have a blessed day/evening everyone! You are all in my prayers each and every day!
  • ratface
    ratface Member Posts: 1,337 Member
    #8
    phrannie51 said:

    I guess for me, it would depend on how bad I want to know...
    and I put that "I" into bold letters. Would you feel better knowing it was HPV caused (the fact that they say it's more curable)...yet it changes nothing treatment wise, would it make YOU feel better knowing. All the criteria would have to benefit me, since I'm the one under the knife.

    p

    black and white (chess pun)
    I will surrender to the observation that I tend to look at things as either black or white with no room for somewhere in between. I will endeavor to entertain the unknown, I will endeavor to entertain the unknown, I will endeavor to entertain the unknown. It's difficult to look at cancer in that fashion. I must try harder.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    TheOtherDitto said:

    The reason for the 2nd biopsy
    is because they want to see if's it's HPV+ so they can offer him a clinical trial that supposedly has better results than the current treatment. They will actually have the pathologist present when the biopsy is done to ensure that enough tissue is taken for determination of HPV status. Doug has pretty much decided that he doesn't want to be a guinea pig when the current treatment seems to work just fine. The only benefit to another biopsy and finding out if it's HPV+ is I think it would give us a little peace of mind to know that the chances of recurrence is next to nothing; whereas if it's not positive you would always wonder/worry when/if it will rear it's ugly head again. We have 3 appointments scheduled for tomorrow: 9:00 at the dentist; 10:30 at the ENT surgeon for 2nd biopsy and discussion; and 2;45 with the radiation oncologist. We have an appointment on Tuesday 5/8 at 10:45 to see the chemo oncologist. Then the only things we should have to meet about would be the feeding tube - which Doug is leaning away from, and the port for chemo. Hopefully we can get on this bus when it comes around the week after Mother's Day. Have a blessed day/evening everyone! You are all in my prayers each and every day!

    To find out if it's HPV or not, with a ME benefit
    of not worrying about reoccurance is exactly the kind of thing I'm talking about...the "me" aspect is all important, I think......clinical trials are great if there are no other options, but not if one is suffering from something that there is a clear cut treatment for....I wouldn't want to be a guena pig, either.

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    TheOtherDitto said:

    The reason for the 2nd biopsy
    is because they want to see if's it's HPV+ so they can offer him a clinical trial that supposedly has better results than the current treatment. They will actually have the pathologist present when the biopsy is done to ensure that enough tissue is taken for determination of HPV status. Doug has pretty much decided that he doesn't want to be a guinea pig when the current treatment seems to work just fine. The only benefit to another biopsy and finding out if it's HPV+ is I think it would give us a little peace of mind to know that the chances of recurrence is next to nothing; whereas if it's not positive you would always wonder/worry when/if it will rear it's ugly head again. We have 3 appointments scheduled for tomorrow: 9:00 at the dentist; 10:30 at the ENT surgeon for 2nd biopsy and discussion; and 2;45 with the radiation oncologist. We have an appointment on Tuesday 5/8 at 10:45 to see the chemo oncologist. Then the only things we should have to meet about would be the feeding tube - which Doug is leaning away from, and the port for chemo. Hopefully we can get on this bus when it comes around the week after Mother's Day. Have a blessed day/evening everyone! You are all in my prayers each and every day!

    Clinical Trial...
    It would be hard for me to accept a clinical trail with the knowledge that I have now.

    For myself and several others here...(at least for now and hopefully ever). The more aggressive approach has worked out about as good as you can get I believe.

    JG
  • ditto1
    ditto1 Member Posts: 660
    #11
    ratface said:

    black and white (chess pun)
    I will surrender to the observation that I tend to look at things as either black or white with no room for somewhere in between. I will endeavor to entertain the unknown, I will endeavor to entertain the unknown, I will endeavor to entertain the unknown. It's difficult to look at cancer in that fashion. I must try harder.

    Long Day. But a Good Day
    Well had a long day but a good day, saw the Dentist, very nice man but plans on taking out quite a few teeth, got the 2nd biopsy, went well, so for what ever reason will at least know if its HPV or not. Saw Rad Onc, so much for promising not to move, will see the Chemo onc next week. Seems we are putting a plan in place and it looks as if its going to get started. Tired and ready for bed.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #12
    ditto1 said:

    Long Day. But a Good Day
    Well had a long day but a good day, saw the Dentist, very nice man but plans on taking out quite a few teeth, got the 2nd biopsy, went well, so for what ever reason will at least know if its HPV or not. Saw Rad Onc, so much for promising not to move, will see the Chemo onc next week. Seems we are putting a plan in place and it looks as if its going to get started. Tired and ready for bed.

    It's all about getting the "first date"....
    of treatment. All the little decisions that will drive you crazy...should I, shouldn't I, where, how....at last plan in place and then Prom night (or Prom day, in this case)....and finally doing something is here....with a loud hoorah!!

    Keeping your seat warm....

    p

Discussion Boards