PUBA's Journey with Squamous Cell Carcinoma, Oral Cavity ...

Survivor: Head & Neck/Throat Cancer > Oral Cavity and Oropharyngeal Cancer > Squamous Cell Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 6 years ago, Male, Age: 51, Stage IV

  1. 1
    • PUBA
    • Experience with Squamous Cell Carcinoma, ...
    over 4 years ago
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    Diagnosed

    Oh No

    After two inconclusive needle biopsies, my ENT doctor did surgical biopsies to locate and identify the cancer in the base of my tongue. I tested positive for HPV which they believed was the likely cause of the cancer. The up side was that tests had indicated that HPV+ patients responded nearly twice as well to treatment.

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  2. 2
    • PUBA
    • Experience with Squamous Cell Carcinoma, ...
    over 4 years ago
    PUBA's Avatar

    Choose treatment.

    Decision Point

    I met with the radiation doctor, the chemo doctor, and the ENT doctor. They then met and agreed to present me with 2 options. The chemo doctor brought to the table an alternative approach to the 'proven' method that was somewhat experimental but had the potential to improve the odds of preventing a recurrence. The proven method entailed simultaneous chemo and radiation treatment for about 7 weeks. The alternative approach required postponing the chemo/radiation treatment for a number of weeks, in order to complete a course of chemo with another drug. If I chose the alternative approach, I risked not being able to finish the chemo/radiation portion of the treatment that seemed essential. The chemo doctor held that both approaches were valid and it was up to me. The other two doctors wouldn't speak negatively of the alternative approach but I could tell they felt better about using the proven method. I'm a thin guy with not much weight to lose and my immune system seemed below average, which gave me reason to doubt that I would be able to endure the additional chemo. It was a gut wrenching decision. I like to think of myself as an 'alternative' or 'progressive' guy, but in this case I chickened out. I chose the proven method.

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  3. 3
    • PUBA
    • Experience with Squamous Cell Carcinoma, ...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Chemo sucks. By the end of my treatment I was thinner, weak, and perpetually nauseous. I had a feeding tube in my tummy which was my only source of nutrition in the later weeks of treatment. I was also given a wide range of other meds to treat nausea, appetite, anxiety, etc. Since completion of treatment those side effects have subsided. I eat regularly. I feel stronger and I've regained most of the weight. However, there are some long-term side effects that I am still adjusting to, such as hearing loss and trouble maintaining comfortable body temperature(it seems I'm always cold).

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • PUBA
    • Experience with Squamous Cell Carcinoma, ...
    over 4 years ago
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    External radiation

    Radiation

    My radiation was done concurrent with the chemo so it may be difficult to distinguish the side effects of each. The daily visits to the lab for treatment were relatively painless. The side effects during treatment were limited to burning of the skin around my neck and some additional trouble swallowing. After treatment effects include loss of function of my esophagus and one of my lymph nodes. I've also noticed some degree of perpetual dry mouth and that most of the facial hair below my jaw line has stopped growing.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
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  5. 5
    • PUBA
    • Experience with Squamous Cell Carcinoma, ...
    over 4 years ago
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    Remission

    Celebration

    Six months to the day after my diagnosis I received a call from my ENT doctor with results from the PET Scan following treatment. He said it was clean! I like to tell people I won the first round. I don't want to get cocky. Cosby said it best, 'Never challenge worse. Never say, 'it can't get worse', because worse will get you'. I thank the heavens every day for each new day.

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  6. 6
    • PUBA
    • Experience with Squamous Cell Carcinoma, ...
    over 4 years ago
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    weight loss, dry mouth, trouble swallowing, hearing loss, hair loss, voice change

    Side Effects

    By the end of my treatment I was thinner, weaker, lost hair, and perpetually nauseous. I also noticed food tasting different, not pleasant. I had a feeding tube in my tummy which was my only source of nutrition in the later weeks of treatment. I was also given a wide range of other meds to treat nausea, appetite, anxiety, etc. Since completion of treatment those side effects have subsided. I eat regularly. I feel stronger and I've regained most of the weight and hair. However, there are some long-term side effects that I am still adjusting to, such as hearing loss and trouble maintaining comfortable body temperature(it seems I'm always cold). My radiation was done concurrent with the chemo so it may be difficult to distinguish the side effects of each. The side effects during treatment were limited to burning of the skin around my neck and some additional trouble swallowing. After treatment effects include loss of function of my esophagus and one of my lymph nodes. I've also noticed some degree of perpetual dry mouth and that most of the facial hair below my jaw line has stopped growing. I should also note that I was constantly fatigued and no doubt depressed. Although these effects have largely subsided, I'm coming to terms with the fact that depression can be a long term problem that I was likely plagued with prior to the onset of this illness but I am now more capable of addressing it as such. BTW, did I mention that I now talk more like Barry White?

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  7. 7
    • PUBA
    • Experience with Squamous Cell Carcinoma, ...
    over 4 years ago
    PUBA's Avatar

    Home care

    Other Care

    My wife was my primary caregiver and I owe her my life. I doubt I could have survived it alone. It should also be said that I am fortunate to have an abundance of friends and family that would have stepped in if it had been necessary. I thank them all for their support. I was overwhelmed with well intended information and recommendations about various treatment options. Again I'm grateful for all of it but I must confess I went on blind faith in my doctors and my wife's independent research to make my decisions. I didn't change my diet or drink medicinal teas. I've tried to reduce my intake of alcoholic beverages and expect I'll never touch a cigarette again.

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