HELP PLEASE AND ADVICE !!

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kevincolangelo1
kevincolangelo1 Member Posts: 6
in Head and Neck Cancer #1

I had tonsil cancer and was treated 2 years ago and last november had neck disection as a lump reoccured - then just 9 weeks later after the swelling of the neck went down we find a new lump slightly lower down on the neck - so 2nd reoccurance - this time they are telling me if its spread to lungs i have 6-9 months left but if not theres a chance to shrink the tumor and posssibly remove it with surgery - anyone else had something like this and survived or whats the cure rate?

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  • MrsBD
    MrsBD Member Posts: 615 Member
    #2
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    New treatments

    New treatments are being discovered at an astounding rate. Check jcourtney's story. He is in a PD-1 trial for a similar situation. Have you gone to a large cancer center or teaching hospital for a second opinion? Don't throw in the towel. You will find support and many prayers here, so please keep checking for updates.

  • hwt
    hwt Member Posts: 2,328 Member
    #3
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    MrsBD said:

    New treatments

    New treatments are being discovered at an astounding rate. Check jcourtney's story. He is in a PD-1 trial for a similar situation. Have you gone to a large cancer center or teaching hospital for a second opinion? Don't throw in the towel. You will find support and many prayers here, so please keep checking for updates.

    Hope

    Cancer 2011 recurrances 2013 and 2014 soon to be NED 2 years since last incident. 

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #4
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    When will they

    Look at your lungs?

    Lots of new treatments out there.  Get to a teaching hospital.  Ask for a second opinion and a third.

    Don't forget the lung cancer site, too.

    Keep posting and let us know of your progress.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
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    Hi Kevin

    That is about the normal Protocol, I was told the same thing back in 2006, my caretaker wife and I decided no more treatment as I was already too sick, God blessed us and the tumor just stopped growing and went into remission.

     

    Tim

  • wmc
    wmc Member Posts: 1,804
    #6
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    Many questions..........

    Welcome and also sorry you need to be here. Do you know what stage you cancer was, or what the T_ N_ M_ numbers were/ Did you go local ro to a major teaching hospital? Have they done a PET/CT scan on you. 

    At this point they don't know much and it sounds like they are just gussing and that is scary, i'm sorry. I would sugest having a second opnion and from a national ranked hospital. http://health.usnews.com/best-hospitals/rankings/cancer

    You can also look up Head & Neck as well. The reason I ask is I went to a hospital that had a tumor board where all the doctors go over your file, and are all there to see and scope you. ENT, Surgen, Radiology, Chemo, Radioligest to read xrays, and they even had a nutritionist. Then they all meet and go over what the best treatment is for you. We have a very good hospital and the higest rateing for heart, and suposed to be good for cancer. There was no way I would let them touch me. I was seen 9 months before and told, you do not have any cancer, and he based this off just blood work. He was very wrong and my tumor had to be growing for at least 12-18 months. Now that makes me always wonder, could they have saved my voice?  Just as I was going into surgery I was T4; N1; M0 [T is tumor, N is nodes or lymph glands, M is metastasized or spread] That would be stage 4. My tumor 3cm x 2.5cm was SCC supraglottic, just above my voice cords and hitting the left one. I had breathing issues so the only optnion I had was to remove my larynx. They did a neck dissection on both sides as a precaution and had pathology check them right then. They did section called level 2-5 on both sides. Removed 48 on left and 38 on right and all were clean. I came out of surgery as T3; N0; M0, and stage 3. When they took my larynx the got the tumor and everything around it. I hace been cleae for 28 months now.  

    I would look into having a second opnion and if they agree you can decide then. I do wish you all the best.

    Bill

  • kevincolangelo1
    kevincolangelo1 Member Posts: 6
    #7
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    wmc said:

    Many questions..........

    Welcome and also sorry you need to be here. Do you know what stage you cancer was, or what the T_ N_ M_ numbers were/ Did you go local ro to a major teaching hospital? Have they done a PET/CT scan on you. 

    At this point they don't know much and it sounds like they are just gussing and that is scary, i'm sorry. I would sugest having a second opnion and from a national ranked hospital. http://health.usnews.com/best-hospitals/rankings/cancer

    You can also look up Head & Neck as well. The reason I ask is I went to a hospital that had a tumor board where all the doctors go over your file, and are all there to see and scope you. ENT, Surgen, Radiology, Chemo, Radioligest to read xrays, and they even had a nutritionist. Then they all meet and go over what the best treatment is for you. We have a very good hospital and the higest rateing for heart, and suposed to be good for cancer. There was no way I would let them touch me. I was seen 9 months before and told, you do not have any cancer, and he based this off just blood work. He was very wrong and my tumor had to be growing for at least 12-18 months. Now that makes me always wonder, could they have saved my voice?  Just as I was going into surgery I was T4; N1; M0 [T is tumor, N is nodes or lymph glands, M is metastasized or spread] That would be stage 4. My tumor 3cm x 2.5cm was SCC supraglottic, just above my voice cords and hitting the left one. I had breathing issues so the only optnion I had was to remove my larynx. They did a neck dissection on both sides as a precaution and had pathology check them right then. They did section called level 2-5 on both sides. Removed 48 on left and 38 on right and all were clean. I came out of surgery as T3; N0; M0, and stage 3. When they took my larynx the got the tumor and everything around it. I hace been cleae for 28 months now.  

    I would look into having a second opnion and if they agree you can decide then. I do wish you all the best.

    Bill

    no one has told me the numbers or what stage

  • kevincolangelo1
    kevincolangelo1 Member Posts: 6
    #8
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    Hondo said:

    Hi Kevin

    That is about the normal Protocol, I was told the same thing back in 2006, my caretaker wife and I decided no more treatment as I was already too sick, God blessed us and the tumor just stopped growing and went into remission.

     

    Tim

    were

    were you diagnosed with cancer then and you had no treatment and it just stopped?

  • kevincolangelo1
    kevincolangelo1 Member Posts: 6
    #9
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    Noellesmom said:

    When will they

    Look at your lungs?

    Lots of new treatments out there.  Get to a teaching hospital.  Ask for a second opinion and a third.

    Don't forget the lung cancer site, too.

    Keep posting and let us know of your progress.

    monday

    I get pet scan monday

  • kevincolangelo1
    kevincolangelo1 Member Posts: 6
    #10
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    hwt said:

    Hope

    Cancer 2011 recurrances 2013 and 2014 soon to be NED 2 years since last incident. 

    what

    what does NED mean

  • kevincolangelo1
    kevincolangelo1 Member Posts: 6
    #11
    Options
    MrsBD said:

    New treatments

    New treatments are being discovered at an astounding rate. Check jcourtney's story. He is in a PD-1 trial for a similar situation. Have you gone to a large cancer center or teaching hospital for a second opinion? Don't throw in the towel. You will find support and many prayers here, so please keep checking for updates.

    where

    where the link to his story?

  • the_wife
    the_wife Member Posts: 184
    #12
    Options
    kevincolangelo1 said:

    no one has told me the numbers or what stage

    Just wondering - did you have

    Just wondering - did you have regular scans and follow ups after your first cancer and recurrence? Some people have CT scans every 3 months following their treatment, although some (like my husband) do not get scanned that often.

    I agree a second opinion is in order. Personally, I would want to go to a major cancer center that specializes in the latest treatments for your cancer, and one that offers clinical trials and the newest treatments. I would want a solid team behind me in this fight. Hopefully this week you can gather your records and after your PET scan you will have more information to bring to another clinic. Do you have a caregiver or someone who is good at navigating the medical system to come with you during appointments? You're going to need a lot of support.

    I wish you all the best. Keep us posted!

  • MrsBD
    MrsBD Member Posts: 615 Member
    #13
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    kevincolangelo1 said:

    no one has told me the numbers or what stage

    Staging

    Your PET scan will allow the cancer team to see where you have been affected by the cancer. They'll use the information to stage your cancer and determine what type of treatment will work best. I had Stage 4a squamous cell carcinoma at the base of my tongue. Head and neck cancers are staged a little differently, so don't compare it to what you've heard about other cancers. Much of what you find online is old too. Each person is uniquely created  so remember that you are not a statistic. 

  • MrsBD
    MrsBD Member Posts: 615 Member
    #14
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    kevincolangelo1 said:

    what

    what does NED mean

    No Evidence of Disease.  We

    No Evidence of Disease.  We call him NED and we love him!

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