NancyBee's Journey with Head & Neck/Throat Cancer

Survivor: Head & Neck/Throat Cancer

Patient Info: Finished active treatment more than 5 years ago, Female, Age: 63

  1. 1
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    Diagnosed

    Oh No

    I was 51 yrs old when a metastasis squamous cell carcinoma was discovered by me in the right side of my throat. I was told it was a secondary source of cancer, the primary source has never been found. I could not believe what I was told and was in total denial of it. I consulted one ear nose and throat surgeon and based on the procedure he promised, scheduled surgery.

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  2. 2
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    I was told I was receiving a 'right neck dissection' and would be able to return to work in approx 2 weeks, but would be left with severe fatigue from the radiation treatments and the surgeon would approve medical leave for up to 8 weeks. What I actually received was a 'radical neck dissection' and was physically unable to return to work at all. The 11th cranial nerve was severed during this surgery as was a nerve in my right ear which caused me to go deaf in that ear. The cranial nerve feeds the scapula muscle on the right shoulder, so I was left with limited range of motion there, my dominant side. I also suffered a stroke and was unable to talk properly or to do simple things such as brushing or washing my hair, taking care of myself after using the toilet, etc. I was also left with a pounding headache and nerve pain and numbness that I'm told will never get any better and I've had to learn to live with it.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    Other

    Drug or Chemo Therapy

    I was given Phenegrin for the constant nausea I had after the surgery caused by dizziness from the severed nerve in my ear. I was given Hydrocodone for pain but it had so many adverse effects that I was switched to Oxycodone which relieved the pain and did not leave me sick but medicated me to the point that all I could do was sleep or sit around. Physical caused the muscles in my neck to spasm horribly so I could not do it like it was scheduled

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    External radiation

    Radiation

    It was recommended I receive 35 radiation treatments, I actually only received about 27 of them. Radiation directly to my right throat left me with blisters, unable to swallow and in fact a small crumb of bread about the size of small wart stuck in my throat and for 4 days all I was able to do was sit straight up and sip water through a straw. Over half of my salivary glands was destroyed with radiation and now I have to drink constantly or I will start to reflux gag because of the dryness in my mouth. I was told my hair would not fall out from the treatment, I now have about half the hair I had before and it continues to fall out. Radiation also destroyed my thyroid gland and I constantly need blood tests and adjustments to my thyroid meds. 7 1/2 yrs after the radiation I still have problems swallowing and most foods taste like sand in my mouth. I will say that the doctor who administered the radiation, Dr. Lisa Virostik, was a gift from God. She hung in with me for over 5 yrs after the surgery and performed ALL my post surgery oral exams. I could not have made it without Dr. Lisa and thank God for her all the time, No one knows what its like to have their throat scoped unless they personally have endured it.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    Other

    Side Effects

    I suffered with pain, dryness of the mouth, hair loss, low blood, had to self-inject Vit B12 shots for months after cancer, Plus I am left with numbness I was told would be a direct result of the surgery and radiation treatments. I also have trouble tasting any foods unless they are sweet, salty or sour like dill pickles. I still continue to have problems swallowing even 7+ years after the surgery. I was left with a horrible scar, running from the middle of the back of my left ear over half way across my throat and down into my shoulder bone in front. I've had to relearn to speak and still cannot pronounce words. I now suffer from PTSD because of the surgery and was declared 100% disabled so I can no longer work.

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  6. 6
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    body functions, job and my mind and self-confidence

    Loss

    The surgeon drew a line on my throat when I went for my initial consultation, stating I would have a 3" T-scar from the surgery. A T-scar that was 1 1/2 inch across and 1 1/2 inch up and down my throat. What I actually received was a radical neck dissection that started just behind the right ear and ran all the way across over half of my throat and down to my collar bone. The nerves cut during this surgery caused numbness and tingling from the top of my head to half way down my chest. I was told it would just continue to spread after surgery and it has. I am no longer able to put on makeup or style my hair. The stroke damaged the part of my mind that controls short term memory so I was not able to function at my profession, computer networking and repair. I see myself as a horribly scarred person now and am very shy around strangers when before I never met a stranger and could talk to anyone. I've had terrible dreams about what happened and how the surgeon was able to lie to me about the surgery I was going to have and get away with it. When my husband and I went for the 2 week post exam he stated to me "I didn't tell you what surgery I was going to do because I could tell you would not have it." When I asked if he didn't feel it was my right to know, he stated "what right did you have, to die with cancer?" I said that was certainly one option, the other would have been to leave his office and find another surgeon, get a 2nd opinion. He then stated "its the doctors choice not the patients choice as to the type of surgery that is done!" I now suffer from panic attacks and anxiety attacks and for a time was unable to leave my home because of the trauma resulting from the type of surgery done and the resulting pain and suffering.

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  7. 7
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    I was initially told survivalr ate for my type of cancer was 1 to 3 yrs

    Decision Point

    With a diagnosis of 1 to 3 yr survival, I lived those three yrs with the idea, 'no matter what I do or don't do I am going to die.' After I reached the 3 yr point I started to educate myself on the type of cancer I had, something I should have done before getting surgery and treatment. I found out that due to my primary source never being found, I had a greater chance of survival than a person whose primary source was discovered! I started to consider myself a survivor and started taking better care of myself. Initially I was having MRI or CT scans every 3 mos but I found out by research that MRI's can damage organs and the dye used in CT scans can kill the kidneys and cause additional cancer, as could the radiation treatments I received after the surgery. I also was given 2 PET scans, and I can't even begin to describe how bad they were. I have refused ALL future tests unless something is found during an exam. I also decided at my 5 yr survival I was no longer going to have my throat 'scoped', because for days after I was unable to swallow and had horrible nose bleeds. I think before agreeing to any surgery or treatments, a person should educated themselves on all aspects of their type of cancer and be informed. I failed to do this and I have suffered for it.

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  8. 8
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    God and my grandson

    Other Care

    I would not be here today if I did not have a deep faith in God and my grandson Dakota. My grandson (5 yrs old at the time) stayed with me through every step of the way, encouraging me and taking care of me. Day after day when he should have been out playing and having fun with friends, he came home and 'took care of Nini.' I remember he would say, 'don't worry Nini I can take care of you.' He told me if something happened to me and he couldn't help, he would call 911 and say 'my Nini has cancer and I need help with her, I can't take care of her.' No one but God knows how I wanted to give up, but I would look at my sweet grandson and know that no matter how bad I suffered, I couldn't give up because of him. I feel we're all here for a reason, God has a plan for all of us. I don't think prior to having cancer I was living God's plan for me, I was too involved in my career and myself. Having cancer helped me focus on the things that matter, living for God and spending time with my family, especially my grandson Dakota. In 2007, God blessed me with someone I have prayed for all my life, a granddaughter with the most beautiful brown eyes and curly dark hair I've ever seen. She tells me 'I'm not your granddaughter, I'm your little daughter and my mom is your big daughter' and I now know my life is perfect and couldn't get any better. I spend my days in service to God and taking care of my beautiful, special grandchildren and I thank God for every extra day he allows me to live.

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  9. 9
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  10. 10
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
    NancyBee's Avatar

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  11. 11
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
    NancyBee's Avatar

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  12. 12
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    Phenegran, Hydrocodone, Oxycodone and Physical Therapy

    Drug or Chemo Therapy

    was given Phenegrin for the constant nausea I had after the surgery caused by dizziness from the severed nerve in my ear. I was given Hydrocodone for pain but it had so many adverse effects that I was switched to Oxycodone which relieved the pain and did not leave me sick but medicated me to the point that all I could do was sleep or sit around. Physical therapy caused the muscles in my neck to spasm horribly so I could not do it like it was scheduled

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  13. 13
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  14. 14
    • NancyBee
    • Experience with Head & Neck/Throat Ca...
    almost 5 years ago
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    Other Care

    This person has yet to add any details about this experience.

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