Mollymum's Journey with Head & Neck/Throat Cancer

Spouse/Partner: Head & Neck/Throat Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 6 years ago, Male, Age: 69, Stage IVA

  1. 1
    • Mollymum
    • Experience with Head & Neck/Throat Ca...
    about 4 years ago
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    Misdiagnosed

    Oh No

    Misdiagnosed for 14 months by local ENT. Kept saying it was a chronic sinus infection causing throat & ear pain & difficulty swallowing. He even went as far to say "it is NOT cancer". Boy was he wrong! When he suggested surgery to repair a deviated septum and that it would be a "bonus" if it got rid of the throat & ear pain, we knew we had to seek other medical care. The next time we heard from this Dr. was when he received the test results from new ENT that confirmed cancer. All apologetic. I wanted to punch him for his incompetence!

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  2. 2
    • Mollymum
    • Experience with Head & Neck/Throat Ca...
    about 4 years ago
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    Diagnosed

    Oh No

    Traveled nearly 4 hours to a well known medical clinic in Santa Barbara, CA for appointment with new ENT to hopefully find the cause of ear & throat pain. After describing systems, the Dr immediately suspected cancer. He scoped the throat through the nose and saw things of suspicion. (The 1st Dr never did this) He felt around on the neck really well and found a small lump. Needle biopsy was then done and the next day the Dr called with the devastating news. Cancer. The first question husband asked was how long do I have to live? Dr answered, depends on the treatment you choose. Now the journey begins..... More testing was ordered, CT scan, blood work, chest x-ray & PET scan. The CT & PET scan confirmed throat cancer, primary was located on the epiglottis with lymph node involvement. After being misdiagnosed for so long we knew one thing for sure, husband would NOT be treated locally! We decided that we would seek treatment options from Stanford Hospital Cancer Center in Palo Alto, CA. A short 3 1/2 hour drive but well worth it. Our first appointment we meet with the Oncologist. He got right to it, putting the wheel in motion. The next day we met with the whole cancer board. Two days later, after the cancer board met, treatment options were explained & all our questions at the time answered. The boards unanimous decision was that surgery would be the best course of action. If all margins came out clean, he'd escape radiation & chemo.

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  3. 3
    • Mollymum
    • Experience with Head & Neck/Throat Ca...
    about 4 years ago
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    Surgery

    Procedure or Surgery

    June 1, 2011 husband underwent a 7 hour surgery to remove the tumor located on his epiglottis. Surgeon had to remove the entire epiglottis to get all of the cancer. At the same time a PEG feeding tube was placed.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    • Mollymum
    • Experience with Head & Neck/Throat Ca...
    about 4 years ago
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    Surgery

    Procedure or Surgery

    June 5, 2011 husband underwent second 7 hour surgery. Bilateral selected neck dissection was performed.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    • Mollymum
    • Experience with Head & Neck/Throat Ca...
    about 4 years ago
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    External radiation

    Radiation

    6 weeks (30 treatments) of radiation began July 11, 2011

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • Mollymum
    • Experience with Head & Neck/Throat Ca...
    about 4 years ago
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    Fatigue (tiredness)

    Side Effects

    Side effects from radiation were/are horrific! Was instructed to use baby shampoo to wash hair and a mild bath soap like dove. For the sun burn we used remedy lotion & aquaphor lotion. Skin started to break down in week 5 and had to apply domeboro soaks. Sore throat, horse voice to no voice, dry mouth,which I gave him salt & baking soda rinses & a rx the doc prescribed. The rope mucus was so bad he'd cough & cough & cough so bad he'd gag on it! Neck & shoulder stiffness & pain, diarrhea, dehydration, dizziness, hair loss on his neck, face and the back of his head, not to mention the worst of all, FATIGUE! To this day, fatigue is still a major issue. On a good day he is only good for half a day.

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  7. 7
    • Mollymum
    • Experience with Head & Neck/Throat Ca...
    about 4 years ago
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    Finished treatment

    Celebration

    August 19, 2011 last day of treatment!!!!

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  8. 8
    • Mollymum
    • Experience with Head & Neck/Throat Ca...
    about 4 years ago
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    Home care

    Other Care

    PEG tube. Adjusting to a feeding tube has probably been the easiest adjustment even if it does come with a lot of issues. Once the number of calories required are established, you have to figure out how often and how much to feed through the tube. Making sure the feedings are not to close together so that you're not up until 1:00 am doing them, then having to start over at 5:00am! Free water is very important for hydration. It's all about balance. You have to learn to crush meds & put through the tube praying it won't clog it! (I've only clogged it 3 times in 19 months). He's had 2 site infections in spite of the constant cleaning of the site, keeping it dry and using pre-split gauze to prevent skin ulcers on the stomach. Sometimes the tube will leak from the hole in his stomach and makes a huge mess which is nothing compared to if he coughs while doing a feeding! It shoots up & out everywhere! I've had to modify his undershirts by cutting a hole near the center and sewing a pocket on the outside for him to place the tube in so he doesn't have to tape it to his stomach. He says that's one of the best things I've ever done for him :-) Then there's always the psychological side....fear of getting to close (hug or snuggling) causing the tube to get smashed or worse, pulled out. It sucks for your sex life! The emotional attachment one develops with the tube is real as real can be. It's much easier for him to put 6-8 ounces of water down the tube vs struggling for 30 +/- minutes to swallow it by mouth. Tube has developed a pin size hole which I've had to tape up until it gets replaced on 1/18/13.

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