Roller Coaster and Questions

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Comments

  • buzz99
    buzz99 Member Posts: 404
    #22
    Roller Coaster
    Hi there! I am the caregiver of Buzz, my husband. In the fall of 2001, he was diagnosed with Squamous Cell Carcinoma of the right tonsil. He had a right tonsillectomy, right neck dissection in which 28 lympth nodes were removed as well as muscle. Then he had daily radiation for 6 weeks. Unbelieveably, the radiation caused no pain or swallowing difficulties and he sailed through it. I hope you do too! He received periodic exams afterward and after 9 years we thought he was cured. In August of 2010, he was diagnosed with Stage IV SCC of the BOT (base of tongue). I am not telling you this to scare you but to advise you to have follow-up exams by an ENT who treats oral cancer patients. Buzz's new cancer was missed by 2 ENT's despite one of them using a scope through the nose!
  • Ron49
    Ron49 Member Posts: 91
    #23
    buzz99 said:

    Roller Coaster
    Hi there! I am the caregiver of Buzz, my husband. In the fall of 2001, he was diagnosed with Squamous Cell Carcinoma of the right tonsil. He had a right tonsillectomy, right neck dissection in which 28 lympth nodes were removed as well as muscle. Then he had daily radiation for 6 weeks. Unbelieveably, the radiation caused no pain or swallowing difficulties and he sailed through it. I hope you do too! He received periodic exams afterward and after 9 years we thought he was cured. In August of 2010, he was diagnosed with Stage IV SCC of the BOT (base of tongue). I am not telling you this to scare you but to advise you to have follow-up exams by an ENT who treats oral cancer patients. Buzz's new cancer was missed by 2 ENT's despite one of them using a scope through the nose!

    Thanks
    Thanks so much for telling me your and Buzz's story. It is helpful for me to hear about others that have gone through the treatment. I am sorry to hear you are once again dealing with it but it sounds like you are both amazing and strong.
    Ron
  • davidgskinner
    davidgskinner Member Posts: 81
    #24
    Ron49 said:

    Thanks
    Thanks so much for telling me your and Buzz's story. It is helpful for me to hear about others that have gone through the treatment. I am sorry to hear you are once again dealing with it but it sounds like you are both amazing and strong.
    Ron

    Switch Doctors
    I can't believe that the doctor has not called you. The email system is great for many things, but this is not one of them. Maybe I just got lucky with Kaiser, but you both should have much more support than that. And I think that most drs there are not unresponsive like this one seems to be. I would call on Monday and ask to be given someone with a better sense of appropriate patient support.
    I hope you get good results, both from the staff and from your PET.
  • Ron49
    Ron49 Member Posts: 91
    #25
    davidgskinner said:

    Switch Doctors
    I can't believe that the doctor has not called you. The email system is great for many things, but this is not one of them. Maybe I just got lucky with Kaiser, but you both should have much more support than that. And I think that most drs there are not unresponsive like this one seems to be. I would call on Monday and ask to be given someone with a better sense of appropriate patient support.
    I hope you get good results, both from the staff and from your PET.

    Hi David
    Thank you so much for your recommendation. I talked to your treating Dr. today....so amazing he spent about 30-40 minutes on the phone with me. We will switch over to his care by the end of the week. I sent him a message and asked for a call back and he called in about 5 minutes of me sending the message. I know he is the right Dr. for us and the other is not. He did assure me I have been getting good care and he and the tumor board have been involved in the recommendations. They all agreed due to the poorly differentiated cells that the tumor had to come out. I just learned this today that the these type of cells are more of a concern. Since the tonsils were negative the PET is the next hope and it is scheduled for Friday at 6:45 am. We have been racking our brains trying to figure out where the cancer might have come from....The dr also told me there was an additional test being done on the tumor. He said that test might provide some info.

    Thanks for the positive thoughts and the recommendation, we truly appreciate it. Hope to meet you sometime in the future. Doc said when I join support group I should ask you to come so we can meet.
    Thanks again
    Ron & Robyn

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