My story

Shellysa
Shellysa Member Posts: 12
edited March 2014 in Head and Neck Cancer #1
I had a "rough" spot on the inside of my cheek which didn't go away. I showed it to my dentist who said it probably wasn't anything other than "cheek-biters" cheek but suggested a biopsy. The oral surgeon saw no urgency...oral cancer is rarely in the cheek and this looked like "cheek-biters" cheek. I delayed the biopsy for several weeks to accomodate some social things. Imagine everyone's shock when the biopsy came back as carcinoma of the buccal mucosa (cheek). Apparently, this is very rare and is usually seen in third world countries where peasants sit around and chew berries, weeds, seeds, etc. and store them in the cheek pouch. I was referred to Loma Linda University where there was a Dr. who specializes in this...however, he hadn't seen a case in almost 1 year.

I had the entire inside of my right cheek removed...all of the mucosa....and replaced with a skin graft from my thigh. I also had 30 lymph nodes removed....all negative. Clear margins were achieved except one margin was minimal (1.2mm) so they suggested radiation. I had no problems recovering from the surgery. I was supposed to have had 25 treatments of radiaiton (only did 24)..and that is when the trouble began. After 3 weeks, I had sores on my tongue and on my lips....areas outside the treatment area that were clipped with the exit of the radiation beam. My Dr. had me take a week off (I also had thrush) and my mouth almost completely healed with the 'vacation.' I couldn't eat...mostly Ensure and soups....and used Oral Gel and lidocaine for the pain. The last two weeks weren't as bad except that in addition to the mouth sores, I developed trimus (inability to open mouth very far) because of the burning of the maseter (Chewing) muscle. I was completely healed from mouth sores within 10 days of completing radiation but am still battling the trismus. I lost about 25% of my saliva so consider myself lucky. I am able to eat everything now but have lost some desire for red meats, etc. I feel like I have had a much easier time than many of you out there and I feel all of your pain. Shelly

Comments

  • Kimba1505
    Kimba1505 Member Posts: 557
    #2
    Even "easier" is hard.
    Welcome Shelly. Sorry you have needed to search for this site; but happy to have you aboard. I am the partner and caretaker of Mark who is 3 months post treatment for SCC of his left tonsil. He too faired fairly well compared to some, but it was still quite a nightmare of an ordeal. I am happy to report he is doing well...awaiting first PET.

    We are quite a club, family, network of folks here. I could not have traversed the past 7 months without the wonderful people here.

    Again, Welcome.
    Kim
  • Glenna M
    Glenna M Member Posts: 1,576
    #3
    Easier time
    Shelly, all of us who have received treatment have had a rough road, some just rougher than others. Even if you feel you had an easier time you still have much to offer everyone here.

    Your experience may help others who are just starting their treatment and other times you may just be the shoulder someone needs to lean on. Sometimes we just need someone to listen to us vent and encourage us.

    Hope you continue to do well,
    Glenna
  • pascotty
    pascotty Member Posts: 174 Member
    #4
    Welcome
    Hi Shelly, welcome to your new family, we all understand each other very clearly here, sorry that you had to join, but, nonetheless, it's fantastic that it is here for us all. I am 6 months post treatment for tonsil cancer 34 rads, 3 chemo, doing really well. First PET showed no c all other appointments have gone well also. I have so much hope now, and it is all due to finding and chatting to all the wonderful people on this site, I hope you find comfort also. Love to you and your family. xxxx Jen
  • JUDYV5
    JUDYV5 Member Posts: 392
    #5
    Nothing is easy about this
    Some people seem to handle symptoms better then others, but there is nothing easy about what you went through. This a great site. Things are easier to handle when you can talk to people who went through the same things that you did. Welcome.
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    #6
    JUDYV5 said:

    Nothing is easy about this
    Some people seem to handle symptoms better then others, but there is nothing easy about what you went through. This a great site. Things are easier to handle when you can talk to people who went through the same things that you did. Welcome.

    Isnt it funny
    Isnt it funny how sometimes us survivors have what I like to call "survivors remorse". I always felt kinda guilty when I would tell my story, which to me seemed just awful. Then I would read or hear about another surivivor story and realize they hard a rougher road when compared to my journey. Then Id feel guilty for whining about my circumstance.

    I used to always say I had "baby" cancer, because that way I felt justified in complaining when talking to someone who had a harder road to travel. I think we all have had it rough. Cancer is no picnic and we all have had our battle. The good thing is.. we all won!
  • hawk711
    hawk711 Member Posts: 566
    #7
    SIRENAF42 said:

    Isnt it funny
    Isnt it funny how sometimes us survivors have what I like to call "survivors remorse". I always felt kinda guilty when I would tell my story, which to me seemed just awful. Then I would read or hear about another surivivor story and realize they hard a rougher road when compared to my journey. Then Id feel guilty for whining about my circumstance.

    I used to always say I had "baby" cancer, because that way I felt justified in complaining when talking to someone who had a harder road to travel. I think we all have had it rough. Cancer is no picnic and we all have had our battle. The good thing is.. we all won!

    shelly, mouth stretchers
    Hi Shelley and thanks for sharing your story. My mouth wouldn't open very far either after rads. My dr said there is a tool that will help you stretch your mouth open and it is useful. I just practiced opening my mouth 10-20 times a day and really stretch it with each opening as far as I could. It helped, my dentist says I 'm now only off about 10% from normal.
    As far as the cheek cancer, wow. I think you're the first here so maybe you can help others who have that issue in the future.
    I wish you all the best, enjoy the ability to eat what you want, many of us are PEG people and need to find some saliva in the future to help us with eating. So Eat up and enjoy beating cancer.
    All the best,,
    Steve
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Shelly
    Thanks for sharing your story. Sometimes I think about Job and all the misery that man when through, but what I think about the most was his finial out come, just being home with my savior at the end of the day
  • rozaroo
    rozaroo Member Posts: 665
    #9
    Hondo said:

    Shelly
    Thanks for sharing your story. Sometimes I think about Job and all the misery that man when through, but what I think about the most was his finial out come, just being home with my savior at the end of the day

    Wellcome Shelly
    I am happy to hear you are doing well. As far as having it easier then most of us, that is a good thing! I did not have too rough of a time of it either,however my family thought differently as I was never ill or one to lie about in bed for day's. They had a hard time watching me go through it. Everone on CSN is so kind & helpfull. I would have been lost if not for all of the wonderfull people on here. I wish you continued success as you go through your journey & remember we are all here for you!
    Hugg's Roz

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