have you had a recurrence??

debbiejeanne
debbiejeanne Member Posts: 3,102 Member
edited February 2012 in Head and Neck Cancer #1
Hi all, and please forgive me for posting again but I'm extremely scared and can't quit thinking about this stuff again.
I orginally had SCC (voice box) and it was treated with 35 rad treatments (Sept/Oct 2009).
I'm still dealing with the side effects as I'm sure we are all. So now I have more to deal with.
I was told that it couldn't be treated with chemo b/c it can't get deep enough to kill the cancer.
I just can't stand the thot of not being able to talk (tho some my enjoy it..lol).
The hardest thing for me to come to grips with is I may have a trake.
I just cannot come to grips with that.
Were you told the same thing?
Are you able to talk using a medical aparatss?
What surgery did you go thru?
I will greatly appreicate your feedback. If there is another choise, I definitely want to know.
Thank you all very much and I hope you are doing better.
God Bless,
Debbie

Comments

  • ahamric
    ahamric Member Posts: 92
    #2
    Hi
    My best friends Dad (like a dad to me) had scc in his voice box back in 01. He had a trake for a little while,but it was eventually removed after all the swelling went down. He talks and you can understand him. He has a very soft raspy voice now but he has a voice. I wish you well and try to give you hope. Hang in there.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Second Opinions
    Have you guys spoke to any others as for second opinions, especially concerning chemo?

    JG
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    Skiffin16 said:

    Second Opinions
    Have you guys spoke to any others as for second opinions, especially concerning chemo?

    JG

    not yet
    I've not spoken to anyone about the second opinion but I plan to start that on Tuesday. I'm not even sure how to do that. Do i just check the phone book? I'm sure I will be able to figure it out. Thank you so much for your replies, I learn alot from them.
    deb
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    ahamric said:

    Hi
    My best friends Dad (like a dad to me) had scc in his voice box back in 01. He had a trake for a little while,but it was eventually removed after all the swelling went down. He talks and you can understand him. He has a very soft raspy voice now but he has a voice. I wish you well and try to give you hope. Hang in there.

    Ahamric, thank you so much.
    Ahamric, thank you so much. I get so much good feedback from this place. I just love it. That really sounds great. I'm so glad your dad is doing well. Does he still have a hole from the trake? Did he have a feeding tube at all?
    Thank you again for taking time to reply.
    deb
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    debbiejeanne said:

    not yet
    I've not spoken to anyone about the second opinion but I plan to start that on Tuesday. I'm not even sure how to do that. Do i just check the phone book? I'm sure I will be able to figure it out. Thank you so much for your replies, I learn alot from them.
    deb

    Not Sure...
    I'm not sure of the process in your instance...my facility is large with many specializing MD's. So it would just be a case of asking for a referral for a second opinion.

    I wouldn't think any MD would/should have a problem with that...after all, it's your life and your're trying to make the most informed decisions based on resources available.

    JG
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    debbiejeanne said:

    not yet
    I've not spoken to anyone about the second opinion but I plan to start that on Tuesday. I'm not even sure how to do that. Do i just check the phone book? I'm sure I will be able to figure it out. Thank you so much for your replies, I learn alot from them.
    deb

    take a deep breath....
    Do not just pick up the phone book. Debbiejeanne, I've been through this three times now in 13 years. Just finishing my radiation on the third go-around. It always feels like there is no time left, no way to figure out what has to be done. There is plenty of time.

    When I had my first cancer, I lived in a small area. The ENT who did my bx clearly wasn't on top of his game. He hedged at how to start my treatment, and where to refer me, so I took my time figuring out where I could reasonably go for another opinion or two. I actually made appointments in three major centers, and embarked on a road trip a few weeks later looking for my treatment team. The first two of those were in St Louis, 250 miles from where I lived. The third was in Houston.

    I found the guy I wanted at the first place, and have stuck with him ever since. Thank god because I've needed him, and needed his resources and referral system twice more. There are plenty of us scattered all over the country who are willing to advise, as well. Referral for opinion is easy. Just ask for what you need.

    Pat
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    longtermsurvivor said:

    take a deep breath....
    Do not just pick up the phone book. Debbiejeanne, I've been through this three times now in 13 years. Just finishing my radiation on the third go-around. It always feels like there is no time left, no way to figure out what has to be done. There is plenty of time.

    When I had my first cancer, I lived in a small area. The ENT who did my bx clearly wasn't on top of his game. He hedged at how to start my treatment, and where to refer me, so I took my time figuring out where I could reasonably go for another opinion or two. I actually made appointments in three major centers, and embarked on a road trip a few weeks later looking for my treatment team. The first two of those were in St Louis, 250 miles from where I lived. The third was in Houston.

    I found the guy I wanted at the first place, and have stuck with him ever since. Thank god because I've needed him, and needed his resources and referral system twice more. There are plenty of us scattered all over the country who are willing to advise, as well. Referral for opinion is easy. Just ask for what you need.

    Pat

    Pat, thank you for that
    Pat, thank you for that great advice. I am seeing a new surgeon on Thursday and I'm hoping he will have some good news. Either way, I fought this and won before and I'll surly do it again. I have too many people who need me so I have no choice but to hang around...lol.
    deb

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