HPV16+ resolved with radiation 2 years ago, but now

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Aquarien
Aquarien Member Posts: 3 *
in Head and Neck Cancer #1

When I got the Proton radiation, I asked my Oncologist what the chances were of it being curative, he said 98% in my case (soft palate). Now I have a 6mm spot in my lung that could be recurrence.

He never mentioned that and I am livid. Was this a play on words? The more I read about HPV 16, the worse it gets, sounds like just a matter of time before it takes my life anyway?

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  • Stephie75
    Stephie75 Member Posts: 185 Member
    edited December 2021 #2
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    I feel for you. The more I read about it, the more I feel like it will end up eating me alive. I have had cancer from it before but in was non intrusive. That was in 2009. When I was first infected, I got dysplasia in my cervix FIRST Pap smear.

    HPV sits dormant and decides to pop up when it feels like it, it seems Shrugs ... The professionals claim it responds to treatment better, but it surely seems to enjoy coming back to visit.

    By the way, 2nd location was on my skin not even near my throat. Why it picks there, who knows. I have heard from the throat it like to move to the lung.

    However I have a history of smoking. Quit around 10 years ago. Socially drank. I'm 46.

    Aqurien, keep in touch and let us know how it's doing. I've got 5 more long weeks of rads. Was 7, but has turned into 8 due to days off during holidays and a partial few days the first week I went. It's frustrating when they say missing one day of rads is not good and can lead to reoccurrence. Then it is forced on you multiple times.

    If you need to vent, PM me.

    P.S.

    Are you near a good cancer hospital? 2nd/3rd opinion?

    Also, what was you stage at original diagnoses, and how about now? Just curious...

    -Steph

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #3
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    Hello Aquarien and I am sorry to hear you have a spot on your lung but I don't think it is unusual.

    You say the spot is 6mm and I looked it up and that is 1/4 inch in inches.

    That is not huge although we would rather not have any.

    I would not be livid at your doctor because he was doing his best to eliminate cancer from your body and he cannot guarantee you will never get cancer again or a recurrence it is the risk you live with and everybody lives with if it comes you deal with it. Anyone can get cancer at any time.

    So since you have a small spot on your lung what do they plan to do with it? It is not verified cancer unless a biopsy is done to verify it other than that it may just be a malignant non-cancerous growth or small tumor.

    My sister had a spot on her lung for years and they just monitored it with a scan and after several years it started to grow so they set her up with cyberknife treatments and it easily got rid of it and she is cancer-free today.

    I myself have had cancer 3 times and I have a small spot on my lung and on my liver right now and they just keep an eye on them as I get my normal periodic scans done and so far they are staying the same so nothing is being done it's a watch and wait.

    Try to give us a little more information please on what they have planned if anything or are they just going to monitor it, have they done a biopsy?

    Remember it's not cancer till they say it's cancer and that requires a biopsy to verify it, have you had one.

    So stay strong and approach this as another situation to deal with.

    Wishing You The Best-Take Care-God Bless-Russ

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #4
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    https://csn.cancer.org/discussion/comment/1691452#Comment_1691452

    Russ,

    Thanks for you always lovely and optimistic posts. I can't recall if your cancer was P16+ though.

    I'm just curious if it was.

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #5
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    Steph, I was never told one way or the other but I think if it was they would have mentioned it.

    I never asked either as more and more people talked about it and it became more well known. Like many people when you learn you have cancer you concentrate on fighting it and your mind is not on a lot of questions. I believe they did tell me it was squamous cell carcinoma which I think is pretty common for H&N cancer.

    Wishing you the best-Take care-God Bless-Russ

  • Stephie75
    Stephie75 Member Posts: 185 Member
    edited December 2021 #6
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    Russ,

    Well, one thing I want to mention is. When you are HPV + - You are fighting that as well as the cancer. So, if they can treat the cancer successfully on my vocal cord, that does not treat the root cause of my cancer. There is no cure for HPV. I've had it since I was 21. I have dealt with HPV cancer once before, luckily non-intrusive, and caught early. Also, dysplasia in my cervix right after I was infected. These occurrences have been in 10 year intervals, give or take a year or two... It's just a pain when you've got to deal with HPV on top of it. I feel the OP's frustration. I just plan to do everything I can to keep my immune system in a place to keep HPV dormant.

    Who knows how long it was on my vocal cord before it turned cancerous. A wart can grow slowly when it's benign.

    I know you have had reoccurrences as well... It's doesn't have to be P16 to come back.

    With the creation of insanely intelligent AI, it will begin to understand our bodies much better than we will. It will then be able to nullify the effects of cancer.

    Death is just a technical problem. Cancer is just a bug or a glitch in the system that can be solved.

    We also can cure cancer, only not reliably or consistently.

    -Steph

  • ProustLover
    ProustLover Member Posts: 120 Member
    #7
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    You are right on, Steph - it's a matter of time. My husband went through tongue surgery, neck dissection, radiation and chemo for HPV+ SCC in 2018. Since then, new spots of pre-cancerous dysplasia have appeared on his tongue, at intervals of approx. 1 year, the most recent last month. Always waiting for spots to appear...so far, they've been caught early enough (although one was "cancer in situ") and removed by laser ablation. We've gotten to know the surgeon pretty well. He shared how frustrating it is - he says the last 10 years have seen "an epidemic" in virus related cancers, involving far younger patients such as yourself. He said that promising studies are underway involving proactive use of immunotherapies, but at present the costs are astonomical. It was a small bit of positive news. Clearly it take an epidemic to get the profit motive stirred up.

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #8
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    https://csn.cancer.org/discussion/comment/1691467#Comment_1691467

    I really feel for your husband. I am sure he would love to have an object in a room to be alone with that represented HPV and beat the SH** out of it. What he has gone through, I cannot imagine. You are correct, HPV is now causing most of these H&N cancers. You & your husband are doing the right thing catching this nasty virus quickly, but it's got to be annoying, & costly as well. It's like you just can't get rid of thing in your body, and you want it out of you. I have started to do research on HP16 and I've got Aldara cream here. I've wondered a lot about that cream. Why can they not make some pill for us with some of the chemicals in the cream to take as a maintenance drug or something. I am just thinking out loud here.

    Hang in there you too, and keep in touch.

    HUGS!

    Steph

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