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osmotar
osmotar Member Posts: 1,006
I saw my radioligist this past tuesday for my regular 3 month check up---as soon as he walked in the room he said Linda what the heck happened...he was referring to my recent episode with a spot on the left side of my tongue that turned out to have scc cells, had surgery on June 19th to remove a small section, and all margins are clear. He said this spot of cancer was in no way related to the tonsil cancer that I had tx on last year..all rads & chemo ended on Dec 30, 2011. He said that was good thing that the 2 different areas were not related, meaning the cancer from the rt tonsil did not make a trip acc my tongue. He said that would indicate that it's something viral...I wanted to say 'ya think" , we discussed HPV , he said to have my PCP call him as he is going to suggest I have the gardasil vacination(s) , I said I didn't think they were intended for folks my age, he said thats true but in this case or at least my case it could be something that would ward off any more occurances..it's not as if I don't check my mouth several times a day to the point or being paranoid, he laughed and said thats not such a bad thing.So now the PCP and the rad docs have talked, I got a call from the PCP ofc and they said they will provide the vacination... I told then I would have to check with my ins carrier, which I did this morning...and soooo they say the eligible age criteria is 7-21, and 22-26 and they wouldn't pay for the injection if it was used as a preventative measure...but they will call me back and let me know if they will pay based on the cancer issues. My question to any of you guys out there have any or your onco or rad docs ever suggested to you to get the vaccine? I don't want to be reaching for straws and pay for something out of pocket that has such an unkown factor for any kind of means to stave off another occurence. My biggest shock to date is that I had this spot on left side of my tongue after all the chemo & rads , that never showed up on PET scans done in March and June of this year, the good thing was that it was so small, and had minimal invasive surgery to remove.

Done rambling ...sheeesh

Linda

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    more to think about
    Hi osmotar,

    Did they biopsy a portion of your tongue and confirm hpv+? I would think that would be done before prescribing Gardasil. Nobody has suggested I get the vaccine, if they had I probably would have (after altering my ID to read 21 years old, just kidding). What bothers me is the inference that because it is a possible virus it can “pop” back into action at any time. Here I thought the hpv+ was more easily treated (successfully). I think more questions are in order and I will rely on others to help us out with those.

    On the other hand, it was small and they got it all so that is great for you.

    Best,

    Matt
  • katenorwood
    katenorwood Member Posts: 1,912
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    Good question !
    Linda,
    If your insurance carrier will pay for it, and there are no adverse side effects from it...I'd say definately do it ! Please let us know on this one....my daughter is having issues and at 30 they told her it wouldn't protect her from reoccurance. She will be having a radical hysterectomy in August. May not have any bearing on H/N cancers, I don't know. But now I will be suggesting this to her doctor. I'm glad things are working out for you ! And please Linda continue to "ramble on" because I am learning from you all ! Warmest regards, Katie
  • ratface
    ratface Member Posts: 1,337 Member
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    Good question !
    Linda,
    If your insurance carrier will pay for it, and there are no adverse side effects from it...I'd say definately do it ! Please let us know on this one....my daughter is having issues and at 30 they told her it wouldn't protect her from reoccurance. She will be having a radical hysterectomy in August. May not have any bearing on H/N cancers, I don't know. But now I will be suggesting this to her doctor. I'm glad things are working out for you ! And please Linda continue to "ramble on" because I am learning from you all ! Warmest regards, Katie

    probably not harmful but no benefit either
    from everything I have read the vaccine will not clear an existing infection nor will it prevent one from someone who has already been infected. Some folks here on the board have gotten the vaccine as added insurance/precaution. If your immune system is working properly you will clear it regardless of the vaccine. It will at least help soothe the mind which is sometimes more important. If you can afford it there is probably little harm in getting it?
  • osmotar
    osmotar Member Posts: 1,006
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    CivilMatt said:

    more to think about
    Hi osmotar,

    Did they biopsy a portion of your tongue and confirm hpv+? I would think that would be done before prescribing Gardasil. Nobody has suggested I get the vaccine, if they had I probably would have (after altering my ID to read 21 years old, just kidding). What bothers me is the inference that because it is a possible virus it can “pop” back into action at any time. Here I thought the hpv+ was more easily treated (successfully). I think more questions are in order and I will rely on others to help us out with those.

    On the other hand, it was small and they got it all so that is great for you.

    Best,

    Matt

    Biopsy
    Yes they did a biopsy on the tongue in early June that showed the scc cells, thats what led to the additional surgery on June 19th. No one prior to tuesdays check up even mentioned HPV, so apparently with the rt tonsil as being the primary for my first occurrence it wasn't confirmed that HPV had anything to do with the C and the required treatments between chemo & rads/chemo from Aug to Dec. Like you Matt, I thought or at least read here that if it was hpv related that it responded well to treatments..oh well..I guess as we always say and read we are each different.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Gardasil
    Linda
    There have been a few on here that have gotten the injections...Charles - IrishGypsie for one.

    I don't know if his insurance paid or not...from my understanding it consists of three injections of a period of time at around $600 each.

    I believe it's more a preventive measure as suggested.., but not a guarantee.

    Matt
    From my understanding..HPV is not curable...once you get it you always have it. But usually a healthy immune system keeps it at bay.

    In most cases your body will clear it within 2 years or so...meaning it's so small that it's usually undetectable;

    Is HPV Curable?
    After first learning that you’ve become infected, a normal question to ask is “Is HPV curable?” Unfortunately, the short answer to this question is “No”. Once you have contracted the HPV virus, it will most likely stay in your body for the rest of your life. This statement, however, comes with a caveat.

    Is HPV Curable in Some Cases?
    Although there is no cure for HPV, researchers report that nearly 90% of all infections clear themselves within a period of two years. This means that your immune system will rid your body of the virus on its own in the vast majority of cases. For the remaining 10% of infections, however, things can become a bit more complicated.


    JG
  • osmotar
    osmotar Member Posts: 1,006
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    ratface said:

    probably not harmful but no benefit either
    from everything I have read the vaccine will not clear an existing infection nor will it prevent one from someone who has already been infected. Some folks here on the board have gotten the vaccine as added insurance/precaution. If your immune system is working properly you will clear it regardless of the vaccine. It will at least help soothe the mind which is sometimes more important. If you can afford it there is probably little harm in getting it?

    It's a
    It's a mind thing with me , I flew thru the orig treatments like a champ, then to have this occur so quickly afterward was crushing,especially since the first time I noticed the spot was late Jan early Feb time frame and asked each of the docs did they think it could be anything..onco said see you ent..ent said it could be thrush , gave me antibotic..rad doc said it didn't look like anything, antibiotics didn't help, ent said swish with MM , nothing so finally in May ent says if it's still there in June I'll byopsy , guess for a bit I had to take a short ride on bus...but still it is nerve racking.It will be a long wait till the next PET in Sept..but then the first 2 didn't show anything...YIKES!!! Me with this semi A type personality ...LOL.

    Linda
  • osmotar
    osmotar Member Posts: 1,006
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    Skiffin16 said:

    Gardasil
    Linda
    There have been a few on here that have gotten the injections...Charles - IrishGypsie for one.

    I don't know if his insurance paid or not...from my understanding it consists of three injections of a period of time at around $600 each.

    I believe it's more a preventive measure as suggested.., but not a guarantee.

    Matt
    From my understanding..HPV is not curable...once you get it you always have it. But usually a healthy immune system keeps it at bay.

    In most cases your body will clear it within 2 years or so...meaning it's so small that it's usually undetectable;

    Is HPV Curable?
    After first learning that you’ve become infected, a normal question to ask is “Is HPV curable?” Unfortunately, the short answer to this question is “No”. Once you have contracted the HPV virus, it will most likely stay in your body for the rest of your life. This statement, however, comes with a caveat.

    Is HPV Curable in Some Cases?
    Although there is no cure for HPV, researchers report that nearly 90% of all infections clear themselves within a period of two years. This means that your immune system will rid your body of the virus on its own in the vast majority of cases. For the remaining 10% of infections, however, things can become a bit more complicated.


    JG

    Injections
    JG...

    From what my insurance said today yes it is a series of 3 , but didn't know over what span of time, when I asked the gal about the cost she didn't know, guessing that depends on the docs office. The insurance company doesn't like to use the word preventative..seems they shy away for anything that would fall under that category...guess they would rather pay hundreds of thousands of dollars out for chemo or any other treatment in lieu of paying for a vacination ..etc.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    osmotar said:

    Biopsy
    Yes they did a biopsy on the tongue in early June that showed the scc cells, thats what led to the additional surgery on June 19th. No one prior to tuesdays check up even mentioned HPV, so apparently with the rt tonsil as being the primary for my first occurrence it wasn't confirmed that HPV had anything to do with the C and the required treatments between chemo & rads/chemo from Aug to Dec. Like you Matt, I thought or at least read here that if it was hpv related that it responded well to treatments..oh well..I guess as we always say and read we are each different.

    Right Tonsil...
    Linda, as you know, you and I have been pretty much identical as for Dx and Tx.

    From my understanding, or at least at my facility, they had to send the biopsy tissue out and it took around three weeks for the results to come back confirming HPV+.

    The tonsils tissue, he determined and staged it..STGIII SCC the same day he took them out.

    So regardless, you got pretty much the same treatment as me, and mine was confirmed as HPV+ derived.

    JG
  • osmotar
    osmotar Member Posts: 1,006
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    Skiffin16 said:

    Right Tonsil...
    Linda, as you know, you and I have been pretty much identical as for Dx and Tx.

    From my understanding, or at least at my facility, they had to send the biopsy tissue out and it took around three weeks for the results to come back confirming HPV+.

    The tonsils tissue, he determined and staged it..STGIII SCC the same day he took them out.

    So regardless, you got pretty much the same treatment as me, and mine was confirmed as HPV+ derived.

    JG

    Yes
    we could have been treatment twins :)

    But it's funny if it was hpv+ you think someone would have mentioned...oh well as they say it is what it is.

    L
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    osmotar said:

    Injections
    JG...

    From what my insurance said today yes it is a series of 3 , but didn't know over what span of time, when I asked the gal about the cost she didn't know, guessing that depends on the docs office. The insurance company doesn't like to use the word preventative..seems they shy away for anything that would fall under that category...guess they would rather pay hundreds of thousands of dollars out for chemo or any other treatment in lieu of paying for a vacination ..etc.

    I Hear Ya...
    That's why it always irritates me when I hear of insurance companies giving grief over PET scans as follow-ups.

    I always wonder if it were them, their spouse, child or parent...would they feel the same?

    JG
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    osmotar said:

    Yes
    we could have been treatment twins :)

    But it's funny if it was hpv+ you think someone would have mentioned...oh well as they say it is what it is.

    L

    Hard To Say....
    Not knowing your facility....

    When I first started on here three years ago, not many places were etsting or even that aware about the HPV link to H&N Cancer.

    Now partially due to time, a lot of cases and even Michael Douglas, I think the connection is a little more known and suspect.

    John
  • osmotar
    osmotar Member Posts: 1,006
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    Skiffin16 said:

    Hard To Say....
    Not knowing your facility....

    When I first started on here three years ago, not many places were etsting or even that aware about the HPV link to H&N Cancer.

    Now partially due to time, a lot of cases and even Michael Douglas, I think the connection is a little more known and suspect.

    John

    True
    I would think in this day and age it would be common place to test for it, especially since I am a non-smoker my whole life and less than a social drinker.Maybe with this saintly face and demure attitude they think that I never stepped into the sexual pool...OMG did I really type that??? LOL
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Skiffin16 said:

    I Hear Ya...
    That's why it always irritates me when I hear of insurance companies giving grief over PET scans as follow-ups.

    I always wonder if it were them, their spouse, child or parent...would they feel the same?

    JG

    So Linda ...
    Do tell us...what did the spot look like on your tongue?? Was it white...what kind of texture.....???? :) You can't just say you saw a spot and not give us other type A folks who look in our mouth 3 times a day (as we also brush and swish) more info. lol.

    Glad you are type A ...that makes me feel better about being a pest to my oncologist and ENT.

    Glad you are well.

    Best,

    Tim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    osmotar said:

    True
    I would think in this day and age it would be common place to test for it, especially since I am a non-smoker my whole life and less than a social drinker.Maybe with this saintly face and demure attitude they think that I never stepped into the sexual pool...OMG did I really type that??? LOL

    Swimmin....
    LOL, well actually I don't think they have concluded that's only sexually derived.

    But in typing this I just realized something.

    In looking it up recently, and the thought that HPV once contracted can't be cured and is always with you.

    That does make for a good case of being infected early in life and then decades lated deriving cancer.

    The thought is your body usually clears itself (or at least measurable amounts) of HPV within 6 - 24 months.

    But, if your immune system becomes weak for some reason, it can take hold.

    Like you, I was never a tobacco user and light drinker. HPV was the first thought from my ENT on possible cause of throat cancer.

    JG
  • osmotar
    osmotar Member Posts: 1,006
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    Skiffin16 said:

    Swimmin....
    LOL, well actually I don't think they have concluded that's only sexually derived.

    But in typing this I just realized something.

    In looking it up recently, and the thought that HPV once contracted can't be cured and is always with you.

    That does make for a good case of being infected early in life and then decades lated deriving cancer.

    The thought is your body usually clears itself (or at least measurable amounts) of HPV within 6 - 24 months.

    But, if your immune system becomes weak for some reason, it can take hold.

    Like you, I was never a tobacco user and light drinker. HPV was the first thought from my ENT on possible cause of throat cancer.

    JG

    Agreed
    you read so much about hpv and sexually issues, but some where I also read that stress could be a factor..and for 1 1/2 years prior to beind dx I was under a lot with work (a screaming GM) and then the GSA ) Govt Services Agency ) coming into my small developement and tell the 14 homeownere there they were buying our propperties and relocating us...it took 1 year to come to settlement and then find a house..I moved into mine mid march 2011, find the small lump on the side of my neck around the 1st of april...what ever caused the c caused it, there is nothing I could have done, except find out about it as quickly as I did.
  • osmotar
    osmotar Member Posts: 1,006
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    Tim6003 said:

    So Linda ...
    Do tell us...what did the spot look like on your tongue?? Was it white...what kind of texture.....???? :) You can't just say you saw a spot and not give us other type A folks who look in our mouth 3 times a day (as we also brush and swish) more info. lol.

    Glad you are type A ...that makes me feel better about being a pest to my oncologist and ENT.

    Glad you are well.

    Best,

    Tim

    Spot
    Tim...the spot was small like a eraser on a pencil, it was white..it actually looked like a small cankor sore. It didn't hurt at first, but as the time went by, several months it got a little redder around the white and it seemed that when ever I ate anything crunchy and that hit the spot it would hurt, plus using a tooth past my dentist gave me and mouthwash would seem to burn. Every time I saw my 3 providers, ent, onco, and rad doc I would ask them about it. As noted in my post above none seemed to concerned, I feel that if I hadn't persisted time after time with the ent he might not have taken the 1st biopsy , in his ofc, during the first week in June. As for being a pest, heck yes, we have to be , it's our right to be.

    Linda
  • ToBeGolden
    ToBeGolden Member Posts: 695
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    No HPV Vaccine
    To answer your direct question: I've had my vocal cords removed (total laryngectomy) due to advanced cancer. I have not been tested for HPV, and no one has mentioned the vaccine.

    Companies should cover the standard and accepted treatments for your (anyone's) condition. So ask your healthcare providers for the exact reason the vaccine is being recommended.

    I have a simple mind. To my way of thinking if your tumor was caused by HPV, isn't the vaccine too late? But I'm no expert, here. Yet if you want to argue with an insurance provider, you will need to answer this kind of question.

    http://www.ncbi.nlm.nih.gov/pubmed/21220258 is an abstract from the Czech Republic may be of interest to you. It seems to contradict my simple minded summary. I know that the girl in this case report did not have identical conditions to you. The above website is part of the National Library of Medicine.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options

    No HPV Vaccine
    To answer your direct question: I've had my vocal cords removed (total laryngectomy) due to advanced cancer. I have not been tested for HPV, and no one has mentioned the vaccine.

    Companies should cover the standard and accepted treatments for your (anyone's) condition. So ask your healthcare providers for the exact reason the vaccine is being recommended.

    I have a simple mind. To my way of thinking if your tumor was caused by HPV, isn't the vaccine too late? But I'm no expert, here. Yet if you want to argue with an insurance provider, you will need to answer this kind of question.

    http://www.ncbi.nlm.nih.gov/pubmed/21220258 is an abstract from the Czech Republic may be of interest to you. It seems to contradict my simple minded summary. I know that the girl in this case report did not have identical conditions to you. The above website is part of the National Library of Medicine.

    Second Time Around...
    I believe the vaccine is recommended to help prevent getting HPV again.

    Which I guess is somewhat contradictive as everything I read says it's not curable. But it's also said, that usually your body rids itself of it, other than very small unmeasurable amounts that may still exist.

    I guess between ridding itself from the body, and the very small left overs. Having the injections could possibly prevent it from being contracted again, or the small residual from re-appearing.

    JG