Newly diagnosed Cystic Adenoid carcinoma

cmai
cmai Member Posts: 21
in Head and Neck Cancer #1

Hi All,

 

My husband is recently diagnosed with cystic adenoid carcinoma believed to start from the salivary gland on left side.  He's stage 4, spread to 1 lymph node, undetermine mets (T4N1Mx).  He was told that surgery is not an option due to the extensive spread of the tumor.  He will start proton therapy at Procure in NJ and cisplatin in 1 week. I'm so nervous... not sure what to expect out of this ... 

 

His radiation oncolgist is Dr. Nancy Lee, a physician at Memorial Sloan Kettering in NJ and medical oncologist is Dr. Xiao (also at Sloan).

 

Wish someone has any advice or experience to share ... truly appreciate....

 

 

Thank You,

 

Kathy

 

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    Welcome Kathy

    Welcome and also sorry you need to be here. Sloan Kettering is one of the top places you can go to. As hard as this will be on your husband he will get the best treatment. Mine was SCC just above my larnyx and removed 86 lymph glands and my larynx. I never had radiation or chemo just surgery. Be fore surgery I was T4; N2; M0, and after it was reduced to T3; N0; M0. So the outhers will help you with the radiation and chemo questions. This will be a rough road he is going down and you will also go for the ride as caregiver. It it really rough on the loved ones. The good news is you both can get through this and will get lots of support from us. On bad days just come here and write it down. It does help just being able to get it out where people do know how you feel and going through. It is like, You walk a mile in my shoes then you can understand. We have. Just take one day at a time, and today is the one that matters, and you will both get through it. I'll add you to the prayer list as well. Best of luck to you both, let your husband know we are pulling for him.

    Bill

  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Kathy

    Bill is right Sloan Kettering is the place to be if you have cancer. None of us liking having this stuff but it is good to know we are in the hands of some of the best in the field on medicine in dealing with this stuff. Keep us up on how he is doing and ask all the questions you want, this is the place for help

    Welcome to CSN H&N

    Tim Hondo

  • MrsBD
    MrsBD Member Posts: 617 Member
    #4
    Welcome to the CSN family.

    Welcome to the CSN family. The people here will do their best to give you support and answer your questions. My cancer was also Stage 4 and the doctors did not want to do surgery. They decided on chemo (Erbitux) and radiation  (IMRT) with acupuncture to protect my salivary glands. It's been almost 8 months since the treatment ended. I'm cancer free and feeling great. It was a tough treatment,  but there is so much hope. You are in many prayers.

  • cmai
    cmai Member Posts: 21
    #5
    Thank YOu

    Thank you ...

     

    I'm so nervous ...we are ready for treatment. Everytime my husband tell me, he has a sore throat or his head hurt...I felt so helpless.....

     

    We are excited about the proton therapy...  but the battle of dealing with insurance seems to be insame..  Yes we have BCBS .. because proton is a new technology, only 14 centers or so in the US.... no clinical data for head & neck cancer..  BCBS denied our treatment...

     

    that means it's $10k out of pocket...  At this time, I am too worry about my husband's treatment status and outcome...  another stress of this is so un-necessary... 

     

    Have you all had issues with insurance and did you all just let go and pay as you go?

     

    Thanks

     

    Kat

  • cmai
    cmai Member Posts: 21
    #6
    MrsBD said:

    Welcome to the CSN family.

    Welcome to the CSN family. The people here will do their best to give you support and answer your questions. My cancer was also Stage 4 and the doctors did not want to do surgery. They decided on chemo (Erbitux) and radiation  (IMRT) with acupuncture to protect my salivary glands. It's been almost 8 months since the treatment ended. I'm cancer free and feeling great. It was a tough treatment,  but there is so much hope. You are in many prayers.

    Congrat

    So great to hear!!  Words of encouragement .. thank you.. it gives the energy boost to go through this process... THANK YOU!

  • avisemi
    avisemi Member Posts: 172
    #7
    Kathy,
    welcome to our group.

    Kathy,

    welcome to our group. My husband also had stage 4 cancer and surgery was not an option. The road was hard but we made it to the other side. The folks here helped along the way.  The entire experience is hard but we felt that the hardest part was the beginning: getting the exact diagnosis and understanding what it all meant. The waiting and not knowing the full details was the worse for us.  Know that it gets better.  

    It helped me a lot to read a lot of the posts here. I liked getting an idea of what to expect and I found a lot of gr suggestions to try. Some helped a lot. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    Hi Kat...and welcome

    to our little home on the net.  This is great forum, and the people here are smart, funny, and so so supportive. You will find much comfort here, and information that even the Drs. don't know here.....The Drs. kick butt on the disease, but it's us with the tips and tricks on how to get through this easier. 

    My cancer was also inorperable....due to location rather than size.  I had NCP, which is cancer right behind the nose in the throat.  There is no way to operate there.  Also, had two nodes in my neck that were infected.  I had 35 rads and 6 chemo treatments....and am now nearly 3 years out of treatment.

    Stick close to this group....they will make this journey so much easier.  Ask any and all questions, nothing is out of bounds. 

    Also...it is only BCBS that won't pay for Proton radiation....I've heard of people fighting this and winning, so don't give up....fight'em!!

    p

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #9
    Kat,

    Welcome to the H&N

    Kat,

    Welcome to the H&N form, where each of us had our dance card punched. Our treatments while different are also very similar. You may experience some challenging times, but nothing you cannot handle.  ‘

    As P51 said there are tricks to learn that will help you immensely.  For me, it was learning to drink lots and lots of water.   Look through the Superthread it can help answer questions.

    Good luck.

    Matt

     

  • katenorwood
    katenorwood Member Posts: 1,912
    #10
    Welcome to the group

    Kathy,

    I'm sorry I don't get on site much.  I was dx'd with adenoid cystic carcinoma  of the right sub. gland (neck) in 2011.  Mine was able to be operated on.  First know there IS information out there for you and your doctors !!!!  www.accrf.org and also www.accoi.org  these two sites have the BEST most FACTUAL information for this cancer.  I know you're  scared, I know you must deal with things immediately.  But PLEASE take the time and read what this dx is, and your options.  If you have access to facebook there is also a page there where other's can help answer more detailed questions with more specific answers.  We are a great source of information here, but with ACC there isn't a whole lot of good detailed information for us.  Tx's are a bit different....please once again check out the info I gave you, and if you need me for anything I'm here.  Again, welcome to the group...and know these folks are awesome !!!!   Katie 

  • cmai
    cmai Member Posts: 21
    #11
    katenorwood said:

    Welcome to the group

    Kathy,

    I'm sorry I don't get on site much.  I was dx'd with adenoid cystic carcinoma  of the right sub. gland (neck) in 2011.  Mine was able to be operated on.  First know there IS information out there for you and your doctors !!!!  www.accrf.org and also www.accoi.org  these two sites have the BEST most FACTUAL information for this cancer.  I know you're  scared, I know you must deal with things immediately.  But PLEASE take the time and read what this dx is, and your options.  If you have access to facebook there is also a page there where other's can help answer more detailed questions with more specific answers.  We are a great source of information here, but with ACC there isn't a whole lot of good detailed information for us.  Tx's are a bit different....please once again check out the info I gave you, and if you need me for anything I'm here.  Again, welcome to the group...and know these folks are awesome !!!!   Katie 

    So much support

    Thanks all.  I can't tell how excited I'm we are starting the treatment next week.  I know it's a tough rough for my husband and I.  He's a figher and believer...  AT first I'm a bit doubtful... but seeing all of your here.. make me feel there's hope !!

     

    Thanks again... and I will keep you all posted...

     

    WE got blender, frozen fruits, and whey protein ready to tackle this!

     

    Kathy

     

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