GGP's Journey:

Survivor: Head & Neck/Throat Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 9 years ago, Male, Age: 57, Stage II

  1. 1
    • GGP
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    GGP's Avatar

    Diagnosed

    Oh No

    I was referred to the Bill Wilkerson Otalarygology Head and Neck Cancer Clinic at Vanderbilt University Medical Center in Nashville. On my first visit. I was found to have a malignant tonsil.

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  2. 2
    • GGP
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    GGP's Avatar

    Dr.'s office visit for lump behind ear.

    Other Care

    Woke up one morning to find a sore spot behind my ear. After having Hodgkins disease 18 years earlier, I thought it had returned. But it turns out to be Squamous Cell Carcinoma. So I am referred to an ENT Oncology Clinic at Vanderbilt.

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  3. 3
    • GGP
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    GGP's Avatar

    Surgery

    Procedure or Surgery

    The tonsil was scheduled to be taken out, as well as margins around it inside my throat. This was a WAY more painful surgery than I expected. An outpatient surgery turned into staying all night in the hospitlal. When I went home to recover it was much worse than I expected. No swallowing of anything other than liquids. Drainage in my throat was bad, couldn't lay down to sleep. Had to get up about once every hour to go spit out. Not what I was expecting, you hear of people (especially kids) getting their tonsils out all the time.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • GGP
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    GGP's Avatar

    Surgery

    Procedure or Surgery

    Next was a Radical Neck Disection. This is taking out the lymph nodes in my neck that had swollen, 2, and all the rest of the lymph nodes that could be found. 29 were taken out. In addition to this scheduled procedure, the Doctor's decided they needed to go back into my throat and revisit my tonsil area and take out a wider margin. This just made the previous surgery worse. This surgery was without a doubt the hardest of any that I have had. I have had cancer for 24 years, and lots of surgeries. This one was a doozie to recover from. I spent a month sleeping on the couch in a recliner since I couldn't lay down. I had extreme pain around the incision area. Counldn't swallow anything but liquids again, for weeks. I was on 3 different types of pain medicine and still wouldn't control the pain. I now have scar tissue in my throat that inhibits swallowing.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • GGP
    • Experience with Head & Neck/Throat Cancer
    almost 5 years ago
    GGP's Avatar

    External radiation

    Radiation

    I had been given radiation 20 years ago when I had Hodgkins disease, and chemo. This time at first they didn't think I could have radiation on the same area again. AFter a Tumor Board consultation at Vanderbilt, the conclusion was, yes I can have it again. This radiation was supposed to be just like the radiation I had back when. But when it started, within two weeks I was feeling the side effects already. Years ago, I barely even noticed I was getting the treatment. This time within two weeks my mouth was dry, saliva glands died out, I started getting burned spots on my neck. Like severe sunburned, kicked up a notch. I had to go home in the afternoon around 2 or so and have a nap. Fatigue set in after 3 weeks. I had only a loss of saliva in my earlier treatments. Loss of my saliva glands 4 years ago, and restricted blood flow to my jaw area, has caused my teeth to fall apart and get brittle. I am currently in plans to have some removed, ( they all need to come out) and others made so I can have a permanent plate put in. If you are going in for head and neck cancer, ask your doctor about having all your teeth taken out before the treatment. Vanderbilt suggests this now, due to the large number of people that are like me and have to have them taken out, after treatment. The problem is Osteoradionecrosis. A condition where the jaw bone will not heal after having a tooth pulled. If this happens, necrosis sets in and the jaw bone can have to be replaced. Not what I wanted to hear.

    Painless Experience: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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