hpv tonsillar cancer

bobamor
bobamor Member Posts: 1
edited May 2017 in Head and Neck Cancer #1

So a couple questions  Would any one recc that i just get the needle biopsy and or other non invasive test to see if my left tonsillar redness swelling and feeling of a pea size area in the base of my left tonsil is hpv related ssc ?  i did get a ct scan and yes they see maybe  perhaps they say a 1.8 x 1.6 cm size possible mass in left tonsil.  and a small something going on in the same side lymph node  but they cover there butts of courrse and say possible  i understand that.  but a radiogist told me it could mimic a bad abscess too>>  so im reading to my brain hurts on the internet that find out what it is first  INSTEAD of doing a tonsillectomy and them biopsy the tonsil because its a rough surgery at age 53 male that i am.  some say radiation first and destroy the cancer cells before cutting and opening and exposing the cells  around  because  radiation works well with tonsillar cancer and then cut out the dead cells of the tonsil   IF at all cutting it out after radiation.  .. but maybe a ct ultrasond guide biopsy of the one lymph node affected on the same side.. if that comes back cancerous than ok radiation of the tonsil.  Also now the new robotic guided de vinci machine to do the tonsillectomy reduces the pain, suffering which i hear people are leaving the hospital that day and eating the next day!!  .  so I know i need a diagnosis first.   but  also  could it be mono, or strep or perhaps a badly badly infected tonsil.  sure im wishing the best ...but i dont want to jump into radiation or surgery even  if its robotic if i dont have to.  surgeons want to cut  and oncologists want to zap and chemo  i know...  Please help and advise with experiences.  and what of alternative treatments??   any one have any suggestions please   .  thankyou  god bless you all   I would truly be grateful.  

Comments

  • lightpulse
    lightpulse Member Posts: 13
    edited May 2017 #2
    Don't do radiation first

    Bob, nice to meet you,

    I had (hopefully I'm NED now) SCC of the hypopharnyx and had radiation treatment and kemo. I know I had to get the radiation because the other option to eliminate the tumor would have been laryngectomy meaning losing my voice. To me, losing the ability to talk is a major inconvenience. Anyway radiation around the throat severly causes dry mouth, loss of taste and swallowing issues (also total intolerance to spicy food, just pure pain). If you love food and eating like I do, these two side effects will really affect your quality of life. Dry mouth will also affect your future dental health detrimentally and possibly also cause malnutrition because of loss of desire for food (post radiation, everything tasted like hay to me, no taste). Now I feel I've regained about 40% of my former taste. I've been told dry mouth is for life and also severely limits foods you'll tolerate. Say goodbye to dry foods because your mouth can't moisten the food. I'm basically restricted to soups, stews and smoothies.

    I would have the biopsy first before any surgeries, radiation and kemo to make sure it's a malignant cancer then make decisions as to your future treatments. Good luck and hope yours will be mild like mine.

    Tak...

  • Chicklette
    Chicklette Member Posts: 225
    #3
    Go for the surgery

    I think you should definitely have the surgery before any radiation or chemo.  It's very standard to remove the tonsils to check for cancer.  My husband is 52 and got through the tonsilectomy just fine.  It took a couple of weeks to recover, but he is fine now (other than having cancer, that is).  The surgery they try to avoid when they can is the neck dissection. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    I'm with Chicklette....

    Get those tonsils removed, and see what you're dealing with.  Surgery is actually the easiest part of any of this, should you have to go on to further treatment. 

    p

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    welcome

    bobamor,

    Welcome to the H&N forum or challenge for you.  I am sorry that you are here, but until they have confirmed cancer you are without diagnosis.  The gold standard is a biopsy and a true look see to confirm cancer. There are enough “what ifs” at the beginning to give me a headache, but you will get through.  I don’t believe the doctors want to perform surgery, radiation or administer chemo for the fun of it, but it is what they are trained to do.  You do not want to run around in circles, you want to select a team which you like and trust.  This magic team will guide you to the correct decision.  If you don’t like what they say then get a 2nd opinion.

    You may never really like your decision or what is about to happen to you. That is the 20/20 hindsight we all have. BUT I have been on here long enough to know the course these things can take and you want to direct them in your favor.

    Matt

  • Fritz
    Fritz Member Posts: 106
    edited May 2017 #6
    Do not take chances

    Trust me, I too was a 53 year old male when I first noticed redness and a small mass on my left tonsil. In a few weeks the mass began to grow and my initial FNA that came back suspicious squamous cell. At the time of surgery the mass had spread to my tongue base and into my soft palate as well as an adjoining lymph node (Stage IVA tonsil cancer).   The only way to be positive about cancer is to have the tissue removed and a full pathology performed.  At that point they can also hone in on the source so future treatments can be more precise.  As Miss P states above, the easiest part of this journey is the surgery if you can believe that. 

    Hope this helps some.

    Freddie

  • Kapital
    Kapital Member Posts: 52 Member
    #7
    dx

    You definitly need a diagnosis before you have chemo or radiation. My husband had a lump on his neck, which his doctor did a fine needle biopsy on, that was negative, followed by a biopsy of his tonsil, which was also negative.  He was told the lump on his neck was a cyst. When he had it removed it turned out to be cancer, with an unknown primary site.  He then had surgery to find the primary site, with a tonsillectomy, multiple biopsies and a laryngoscopy, which showed stage IV tonsil cancer. It was behind his left tonsil, therefore, difficult to find. The tonsillectomy, at age 60, was far easier than chemo and radiation. He did fine with the surgery. It hurt, but he was over it within a few weeks. Once he had a definite primary site his doctors recommended chemo and radiation, with no further surgery.  He is two years cancer free at this point. If it was me, I would do everything possible, including surgery, to make sure I had an accurate diagnosis.

  • bebo12249
    bebo12249 Member Posts: 181 Member
    #8
    After a biopsy and pet to

    After a biopsy and pet to confirm tonsil scc, i had surgery, tonsil removal. Was not nearly as bad as I was lead to believe. Also, turned out that I had to take a reduced dose of cisplatin (kidneys) so I was glad I had the tonsil removed first. 

  • CajunEagle
    CajunEagle Member Posts: 408
    #9
    It's all a life changer

    Eight years ago at age 61, I kept getting Sinus headaches.  Finally went to my ENT who did oral observations and noticed a redness of my left Tonsil.....then two shots in the butt, and come back the next week.  On the follow-up, He exclaims that my left tonsil had encapsulated my esophagus and wondered how I was eating.  Immediate biopsy was done, and one week later I have the best Cancer team in LA. telling me that the tumour is wrapped around my Carotid Artery and surgery was out of the question.  One week later, they threw the kitchen sink at me with Chemo (Cisplatin...Taxtera...2 weeks of 5-FU....every two weeks) plus 36 rounds of radiation.  Installed a peg tube that I used for 15 months.  I made it through the ordeal, but was told much later that the team had very serious doubts that I could ever pull through.  During all office visits now, the word amazing seems to somehow show up.  Side effects from being a Tonsil survivor are loss of saliva.....Neuropathy in feet and fingers.....various eating issues.....a few dental problems, but nothing major yet....and tiredness.  On a side note, one year ago I lost my right ear....ear canal...Mastiod Bone..... and a few facial muscles due to 14 hours of Melanoma surgery.  I'm learning to adapt all over again.  Like I say, this stuff is a life changer.

    Larry

  • Linda C.
    Linda C. Member Posts: 107 Member
    edited May 2017 #10
    CajunEagle said:

    It's all a life changer

    Eight years ago at age 61, I kept getting Sinus headaches.  Finally went to my ENT who did oral observations and noticed a redness of my left Tonsil.....then two shots in the butt, and come back the next week.  On the follow-up, He exclaims that my left tonsil had encapsulated my esophagus and wondered how I was eating.  Immediate biopsy was done, and one week later I have the best Cancer team in LA. telling me that the tumour is wrapped around my Carotid Artery and surgery was out of the question.  One week later, they threw the kitchen sink at me with Chemo (Cisplatin...Taxtera...2 weeks of 5-FU....every two weeks) plus 36 rounds of radiation.  Installed a peg tube that I used for 15 months.  I made it through the ordeal, but was told much later that the team had very serious doubts that I could ever pull through.  During all office visits now, the word amazing seems to somehow show up.  Side effects from being a Tonsil survivor are loss of saliva.....Neuropathy in feet and fingers.....various eating issues.....a few dental problems, but nothing major yet....and tiredness.  On a side note, one year ago I lost my right ear....ear canal...Mastiod Bone..... and a few facial muscles due to 14 hours of Melanoma surgery.  I'm learning to adapt all over again.  Like I say, this stuff is a life changer.

    Larry

    Hi Larry,  I am also a Cajun.

    Hi Larry,  I am also a Cajun.  I noticed you said you had the best Cancer team in LA.  Where did you get your treatment?

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