New diagnosed

ruben1
ruben1 Member Posts: 14
in Head and Neck Cancer #1

Hello everyone,  I am new here.  I was diagnosed with squamous cell carcinoma of throat and tonsil officially june 29th 2017.  I am 48 years old,pretty healthy and had a sore throat for 2 months, ENT said was tumor right away. Had CT  scan then sx june 28th 2017  to remove tonsil....lets just say dr was surprised with what he seen. Simple tonsilectomy and biopsy turned into hour long sx with him trying to get all the bad stuff. Was unable.. now the hard part begins. I have been having a very rough time from this past week sx but now comes my journey... PET scan in a couple days...told our children ...mom..family...friends... getting an onocolgist now... I know its bad..the dr was pretty straight with me... my wife is trying to hold it together..  pray for us

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    welcome

    Hi Ruben,

    Welcome  to the  H&N forum, sorry that you are here.

    It was pretty bad for many of us, but treatments today are working successfully.  I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  My signal for attention was a lump on neck (no pain) and after a jugular vein dissection and lower tongue surgery I was off to the races.

    I will be straight with you and you will most likely be fine.  You will have to go through the paces, but many here can help you with the side effects to come.

    Learn all you can (we all did) and stay positive, you have a lot to live for.

    Good luck,

    Matt

  • soonermom
    soonermom Member Posts: 155
    #3
    Ugh

    I am so sorry for your family.  The PET will give you more information.  Keep up updated.  Tell your wife she can contact me through CSN email anytime if she has caregiver questions.  It is a different journey for the caregivers.  11 weeks post treatment, I am still trying to hold it together, some days better than others.  

  • ruben1
    ruben1 Member Posts: 14
    edited July 2017 #4
    CivilMatt said:

    welcome

    Hi Ruben,

    Welcome  to the  H&N forum, sorry that you are here.

    It was pretty bad for many of us, but treatments today are working successfully.  I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  My signal for attention was a lump on neck (no pain) and after a jugular vein dissection and lower tongue surgery I was off to the races.

    I will be straight with you and you will most likely be fine.  You will have to go through the paces, but many here can help you with the side effects to come.

    Learn all you can (we all did) and stay positive, you have a lot to live for.

    Good luck,

    Matt

    Thanks.. we will keep you

    Thanks.. we will keep you posted with PET  results... all of us are trying to keep positive...good news today was first day after sx i was able to eat and not just drink.... 

  • ruben1
    ruben1 Member Posts: 14
    #5
    soonermom said:

    Ugh

    I am so sorry for your family.  The PET will give you more information.  Keep up updated.  Tell your wife she can contact me through CSN email anytime if she has caregiver questions.  It is a different journey for the caregivers.  11 weeks post treatment, I am still trying to hold it together, some days better than others.  

    I know support wherever it

    I know support wherever it comes from is a good thing. Thank you..

  • Joel4
    Joel4 Member Posts: 263 Member
    #6
    PET Scan

    The Pet scan will give the treatment team a better idea of where else the cancer may have spread to such as nearby lymph nodes.  Once they know if the cancer is confined to the tonsil or not, they will be able to stage you, which will give them an idea on how to proceed.  Treatment could be surgery only but it usually means radiation or chemo or some combination thereof.  

     

  • ruben1
    ruben1 Member Posts: 14
    #7
    Joel4 said:

    PET Scan

    The Pet scan will give the treatment team a better idea of where else the cancer may have spread to such as nearby lymph nodes.  Once they know if the cancer is confined to the tonsil or not, they will be able to stage you, which will give them an idea on how to proceed.  Treatment could be surgery only but it usually means radiation or chemo or some combination thereof.  

     

    yea,  Had a kind of a heads

    yea,  Had a kind of a heads up from my ENT, he really has been a great Dr.  This has all happened within 3 weeks really, in a bit of a whirlwind still,  Thanks for kind words and will keep posting when I know more from PET scan

  • Joel4
    Joel4 Member Posts: 263 Member
    edited July 2017 #8
    Hi There

    This is definitely a scary place to find yourself, but the treaments are effective, and the prognosis is typically good.

    i am three months post treatment after finding a lump on my right collarbone two days before Christmas.  treatment was a bear, but this weekend I'll be enjoying time spent with family, some BBQ, and some holiday fun.  In some ways I'm healthier than I was before.  

    There are definitely some bumps in the road, but you got this.  Enjoy food, eating as much as you can before some of the temporary treatment effects take hold!

    Keep us updated.

    Joel

  • ruben1
    ruben1 Member Posts: 14
    #9
    PET

    Just had my PET... got tesults..good news is just in neck area. Bad news more cancer in neck than thought. But still reason to celebrate.. onocologist is next..  stage IVa-T4aN2bMO-SCC.... 

  • CajunEagle
    CajunEagle Member Posts: 408
    #10
    Gosh

    Sounds exactly like my tonsil cancer episodes 8 years ago.  Two years ago, one of my many medical persons told me that the folks on the Tumor Board never thought I'd make it through the treatment that was prescribed for me.  It was one hell of a journey, but I made it (duhh).  Now the fight is with Melanoma.

    Larry

  • Chicklette
    Chicklette Member Posts: 225
    #11
    ruben1 said:

    PET

    Just had my PET... got tesults..good news is just in neck area. Bad news more cancer in neck than thought. But still reason to celebrate.. onocologist is next..  stage IVa-T4aN2bMO-SCC.... 

    M0

    That is always good news!  My husband just finished treatment for SCC of unknown primary that spread to the left side of his neck.  His only symptom was a painless lump on his neck.  Treatment isn't fun, but he made it through relatively easily compared to many others.  Everyone's journey is different.  Good luck!

  • ruben1
    ruben1 Member Posts: 14
    #12

    Thanks guys...im ready for the fight...positive vibes

  • OKCnative
    OKCnative Member Posts: 326 Member
    #13
    Sounds a lot like my

    Sounds a lot like my situation and I'm just starting the process too.

    I hated my first ENT. He just ignored the situation until one day he said "It's most likley cancer, lets get you scheduled to have your nodes taken out (neck dissection)." I was like "Hold on" and took matters into my own hands and sought the advice of a private oncologist who said way more should be down before deciding to cut me. He sent me to another ENT, who I love. That ENT did a need biopsy and confirmed the cancer.

    The one piece of advice I really liked from my ENT was that, while he appreciated the referral from my private oncologist, he recommended that I not go back to him and instead go to a cancer center and seek a team approach to my treatment.

    I've really felt more confident with this plan and I've met several people who had my same 'cancer team' and made it through with little or no surgery.

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