HPV and cancer care among the dinosaurs

D Lewis
D Lewis Member Posts: 1,581 Member
edited March 2014 in Head and Neck Cancer #1
At what point in your diagnosis/treatment process were you informed about the potential significance of the HPV virus to mouth and throat cancers? Never? During follow-up on that first discovery of a metastatic tumor? By your PCP? By your oncologist? Radiologist?

Perhaps I'm expecting too much too soon. A 3-cm lymph node was removed (Jan 20th) by my ENT doc, I was given the surprise diagnosis of Mets SCC on Jan 27th, and I'm STILL waiting for permission from my insurance company for the PET-CT. Multiple nasal scopings have not yet revealed a primary.

I raised the subject yesterday with my GP/OBGYN, who treated me for HPV infection many years ago, and he dismissed the idea, saying HPV causes anal and cervical cancer, and not to worry my pretty little head about it. I have a MedLine article about HPV and HN cancers, I'm attaching a dinosaur sticker, and I'm leaving it with his nurse today.

I sent an email to my ENT on Saturday, asking him to have my excised mets SCC tested for the presence of HPV. I have not yet even received the courtesy of a reply. Not even to my follow-up calls. Have I jumped the gun here? Is this, perhaps, an oncologist's job rather than the ENT? I am convinced that the knowledge of whether my tumor is HPV+ will help guide my ENT in his search for the primary and for more mets.

Who WILL my PCP be? Will it be the ENT who found the thing? My family practioner? Is it my choice? At what point should I leave the stone age, and head for UC Davis or Stanford? I'm going to have to change my screen name to "woefully ignorant."

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    HPV
    It seems to me that your GP/OBGYN needs to get up to speed (in all fairness though, an ENT would be more informed of thoat related cancers and causes I'd presume though rather than an OBGYN)....you can search yourself on Google and see many articles relating to the rise of HPV derived throat cancer (for that matter search this forum, you'll see many references). It's to the point that many articles and studies suggest that it will overtake tobacco derived throat cancers in a few years.

    To answer your question on when I was informed of the possibility of an HPV derived throat cancer... My ENT suggested that on day one, as soon as he realized my symptoms of possible cancer and that I was never a tobacco user.

    He had me do a CT that same day, and three days later removed my tonsils, staged my cancer SCC stage III and confirmed it was SCC. He sent my biopsy tissues out for HPV confirmation and about 3 - 4 weeks the results came back positive for HPV.

    If your doctors are that out of touch, you might shop around for a second opinion.

    Good Luck and Keep us informed of your journey,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    Skiffin16 said:

    HPV
    It seems to me that your GP/OBGYN needs to get up to speed (in all fairness though, an ENT would be more informed of thoat related cancers and causes I'd presume though rather than an OBGYN)....you can search yourself on Google and see many articles relating to the rise of HPV derived throat cancer (for that matter search this forum, you'll see many references). It's to the point that many articles and studies suggest that it will overtake tobacco derived throat cancers in a few years.

    To answer your question on when I was informed of the possibility of an HPV derived throat cancer... My ENT suggested that on day one, as soon as he realized my symptoms of possible cancer and that I was never a tobacco user.

    He had me do a CT that same day, and three days later removed my tonsils, staged my cancer SCC stage III and confirmed it was SCC. He sent my biopsy tissues out for HPV confirmation and about 3 - 4 weeks the results came back positive for HPV.

    If your doctors are that out of touch, you might shop around for a second opinion.

    Good Luck and Keep us informed of your journey,
    John

    Consider moving your care now
    From what your descibing I might consider moving my care over to a comprehensive cancer treatment facility from the start. You will be much better off in the long run. You want a facility where the ENt, radiologist, chemo oncologist, and possibly a dentist and nutritionist have some form of communication with one another relative to your treatment. In large University settings this is known as the tumor board. You can search right on this sight to see if your hospital is cancer treatment accredited. You can also search here to see how many head and neck cases they treat per year. Head and neck cancer affects 4% of the U.S. population which amounts to a handful of cases for many hospitals per year. You want to be treated somewhere that does thousands per year and this usually is a university setting. Take the time now to set things up correctly as these folks will have the power of life and death over you. Personally I used two different hospitals, I loved my radiaologist, had an OK chemo oncologist and felt my ENT was not up to par. There is nothing that says you can't go where your insurance is acceapted. A second opnion may open your eyes to new technologies or procedures not practiced where you are now.

    Slow down a bit. I sense a lot of anger in your posts and I understand that, but you have time to get this right. Just being here speaks to you looking for the right answers. We are all here to help and learn from each other. Keep your questions comming.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #4
    ratface said:

    Consider moving your care now
    From what your descibing I might consider moving my care over to a comprehensive cancer treatment facility from the start. You will be much better off in the long run. You want a facility where the ENt, radiologist, chemo oncologist, and possibly a dentist and nutritionist have some form of communication with one another relative to your treatment. In large University settings this is known as the tumor board. You can search right on this sight to see if your hospital is cancer treatment accredited. You can also search here to see how many head and neck cases they treat per year. Head and neck cancer affects 4% of the U.S. population which amounts to a handful of cases for many hospitals per year. You want to be treated somewhere that does thousands per year and this usually is a university setting. Take the time now to set things up correctly as these folks will have the power of life and death over you. Personally I used two different hospitals, I loved my radiaologist, had an OK chemo oncologist and felt my ENT was not up to par. There is nothing that says you can't go where your insurance is acceapted. A second opnion may open your eyes to new technologies or procedures not practiced where you are now.

    Slow down a bit. I sense a lot of anger in your posts and I understand that, but you have time to get this right. Just being here speaks to you looking for the right answers. We are all here to help and learn from each other. Keep your questions comming.

    Wise words.
    Thank you.
  • stevenl
    stevenl Member Posts: 587
    #5
    Angry
    Hey D,
    I understand your impatience. Today I went to see a general surgeon about my peg and port and as usual the guy just started talking at light speed about everything. So in my own sweet gentle way, LOL I had to tell him to slow down, start over, and if he could please to dumb it down so even a stupid bricklayer like me could understand what in Gods name he was rambling on about. After all that I really liked the guy and we all had our apologies and
    it was all good. You see, I understood most of what he was saying because of this web site and the research I have done. My wife was just crying. But if you can't get satisfied with
    everything then by all means go elsewhere. But make em satisfy you and make you feel comfortable. Hang in there and be strong. My thoughts and prayers are with you.

    Steve
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    ratface said:

    Consider moving your care now
    From what your descibing I might consider moving my care over to a comprehensive cancer treatment facility from the start. You will be much better off in the long run. You want a facility where the ENt, radiologist, chemo oncologist, and possibly a dentist and nutritionist have some form of communication with one another relative to your treatment. In large University settings this is known as the tumor board. You can search right on this sight to see if your hospital is cancer treatment accredited. You can also search here to see how many head and neck cases they treat per year. Head and neck cancer affects 4% of the U.S. population which amounts to a handful of cases for many hospitals per year. You want to be treated somewhere that does thousands per year and this usually is a university setting. Take the time now to set things up correctly as these folks will have the power of life and death over you. Personally I used two different hospitals, I loved my radiaologist, had an OK chemo oncologist and felt my ENT was not up to par. There is nothing that says you can't go where your insurance is acceapted. A second opnion may open your eyes to new technologies or procedures not practiced where you are now.

    Slow down a bit. I sense a lot of anger in your posts and I understand that, but you have time to get this right. Just being here speaks to you looking for the right answers. We are all here to help and learn from each other. Keep your questions comming.

    Cancer Treatment Team
    Good advice RatFace...

    My treatment was/is with a cancer research facility "Watson Clinic Center for Cancer Care & Research". My GP, ENT, Oncolongist, and Radiologist are all part of the same organization, have access to all of my records and history. My ENT was and is the main point of contact or the lead professional in my case. He chose which of the other professionals would be part of my team, but left it to them as to their area expertise and treatment, he is very involved with all phases of my treatment.

    My chemo treatment center was on the second floor, and my radiaology center is on the first floor of that same building. My ENT is on the same grounds in a separate building. Everything is very local and communication between the medical professionals is awesome.

    I feel RatFace has a very good point and worthy of some research on your part for what's best for you will definitely be benificial.

    Very Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Hi D
    One thing I can say you are not ignorant but becoming better informed. I agree with the other post here that most of our doctors are not up to speed anymore on the causes of cancer. You might also want to inform your ENT that one of the Ten Commandment are Thou shall not lie, holding back info is the same as telling a lie.

    In your treatment you and your doctors must be teammates if you feel they are not playing on the same team as you get new teammates. Learn all you can about your type of cancer and don’t be afraid to ask your doctors questions and have them explain the answer in laymen terms. I agree with ratface a second opinion at a cancer institution might be the way to go.

    Take care
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    not ignorant
    D Lewis, you are so far from ignorant. I was amazed to see all your questions. Now let's talk ignorant, when I was diagnosed, I didn't ask ANY questions, not one. And I never did until I found this site and found out what questions I should be asking. I am 15 weeks out from the last of 35 rad trmnts for SCC (vocal cord) and I just found out today that it is called SCC. I only found that out because someone reply to a post by me and mentioned my cancer was probably SCC, hence the question. I just really had no idea what to ask, so see, you really are a very smart person b/c you asked a lot of questions.
    I will keep you in my prayers and you KEEP asking questions, the people here are always willing to help. And by the way, my oncologist was my main care giver thru my treatment and I saw my ent 6 weeks after the trmnts stopped (had to allow the swelling in throat to go down).
    God Bless,
    Debbie
  • GRAVEY
    GRAVEY Member Posts: 83
    #9
    My Oncologist said that she
    My Oncologist said that she felt my SCC on the base of my tongue was from the HPV virus, but I didnt ask if they had tested me for the virus or not. Im 36, and I did smoke for 15 years, and she was aware of that, but still told me she thought it was from HPV.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #10
    GRAVEY said:

    My Oncologist said that she
    My Oncologist said that she felt my SCC on the base of my tongue was from the HPV virus, but I didnt ask if they had tested me for the virus or not. Im 36, and I did smoke for 15 years, and she was aware of that, but still told me she thought it was from HPV.

    Yep, HPV+
    As I noted on another thread in the Head-Neck forum, the test of my excised neck lymph node came back very strongly positive for HPV-16. The pathology report used the word "infested." Eeek.

    Deb L
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    D Lewis said:

    Yep, HPV+
    As I noted on another thread in the Head-Neck forum, the test of my excised neck lymph node came back very strongly positive for HPV-16. The pathology report used the word "infested." Eeek.

    Deb L

    Good Thing
    Morning Deb,

    Well that's a good thing I guess as much as it can be.... HPV derived tends to respond well to the treatment.

    God Bless and Best Wishes.

    John

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