Adenoid Cystic Carcinoma

rkliveson
rkliveson Member Posts: 15
in Head and Neck Cancer #1

Just started my journey of survival. Head is spinning, so many things being said, and what do you mean I am the topic.  Feeling lost and uncertain.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    you are the topic

    rkliveson,

    Welcome to the H&N forum, sorry you find the need to be here.

    First off, spinning head is the norm, you just got dealt a whopper, but it is not all bad.  They caught it, they will treat it and you will get better.

    Now is the time to gather information.  Read the superthread, read posts, ask questions, take notes, take someone with you to appts., get a second opinion.

    Soon you will have a plan, then treatment will begin, then it will be over.

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Hello RK....and welcome to this

    wonderful forum.....you'll find the folks here very supportive, kind.....and knowledgable.  There are a couple people here who have ACC....another new person, just like yourself posted the other night.

    We all felt lost, and gawd knows "uncertain" when we first heard the news.....but you will get your feet back under you, and you'll get ready to fight.....Are they talking radiation for you?

    p

  • KB56
    KB56 Member Posts: 318 Member
    #4
    ACC

    when you first find out it is definitely overwhelming And  feeling lost and uncertain is normal.    As your treatment plan firms up and you will have had a chance to absorb everything that's probably been thrown at you the last few days/ weeks, it will get a little easier.  

    try and keep a positive attitude because everyone on this site is a cancer survivor, caregiver or currently getting treatment and most are doing well.  The initial steps of the journey are in many ways the toughest.  Pretty soon you will focus your energy on beating this thing and getting it behind you.  My 1 year anniversary of DX is 4/1 so I am about a year ahead of you. It will be a tough few months but I feel great now and in some ways it feels like a distant memory.   The folks on this site csn help a lot so don't hesitate to reach out.   They can definitely help with clarity on what to expect which helps with the uncertainty.   

     

    Best of luck and stay positive. 

    Keith

  • rkliveson
    rkliveson Member Posts: 15
    #5
    KB56 said:

    ACC

    when you first find out it is definitely overwhelming And  feeling lost and uncertain is normal.    As your treatment plan firms up and you will have had a chance to absorb everything that's probably been thrown at you the last few days/ weeks, it will get a little easier.  

    try and keep a positive attitude because everyone on this site is a cancer survivor, caregiver or currently getting treatment and most are doing well.  The initial steps of the journey are in many ways the toughest.  Pretty soon you will focus your energy on beating this thing and getting it behind you.  My 1 year anniversary of DX is 4/1 so I am about a year ahead of you. It will be a tough few months but I feel great now and in some ways it feels like a distant memory.   The folks on this site csn help a lot so don't hesitate to reach out.   They can definitely help with clarity on what to expect which helps with the uncertainty.   

     

    Best of luck and stay positive. 

    Keith

    ACC

    first off congratulations on 1 year, keep up the great progress.  I am positive for the most part.  Radiation starts next wed . March 26  for 6.5 weeks 5 days a week. not sure yet on chemo, will get that schedule on monday. 

    I will raise a toast to you on april 1.

     

    RK

  • rkliveson
    rkliveson Member Posts: 15
    #6
    radiation mask

    was fitted this week with radiation mask.  being strapped to a table with that mask skin tight to my face was a bit creepy. had to wear it througout petscan.. felt like forever. start radiation next wed march 26th.  6.5 weeks 5 days a week.

    Should be in New York enjoying spring break with my son at NYU not being fitted for radiation mask.. 

    RK

  • donfoo
    donfoo Member Posts: 1,773 Member
    #7
    rkliveson said:

    radiation mask

    was fitted this week with radiation mask.  being strapped to a table with that mask skin tight to my face was a bit creepy. had to wear it througout petscan.. felt like forever. start radiation next wed march 26th.  6.5 weeks 5 days a week.

    Should be in New York enjoying spring break with my son at NYU not being fitted for radiation mask.. 

    RK

    Welcome RK

    Welcom to CSN! Great bunch of folks with a ton of experience and practical tips to get through tx and post recovery. Read lots and ask questions when you need as there is surely someone who has a good response. Hang in there, journey starting but it will pass and you will be recovering in no time.

  • katenorwood
    katenorwood Member Posts: 1,912
    #8
    Hello !

    I'm going to ask where your ACC was dx'd ?  Mine was the right submandiblar saliva gland back in 2011.  I had a radical neck dissection (both sides) to remove the gland and a few lymph nodes.  also a course of radiation.  Is your doctor one that has dealt with ACC before ?  Our site here is very knowledgable about tx's, and just a wonderful group of folks in general.  But I'm going to give you a link to another that is specific to adenoid cystic carcinoma.

    www.accrf.org and also www.accoi.org  there you will find everything from A to Z that you may find helpful through your journey with your dx.  I post on this board quite a bit also.  But come here because H/N dx's are very similar and our experiences can be shared for others that follow us. 

    You can private message me here anytime if there is anything I can help you with.  Best of luck !  Katie 

  • rkliveson
    rkliveson Member Posts: 15
    #9
    katenorwood said:

    Hello !

    I'm going to ask where your ACC was dx'd ?  Mine was the right submandiblar saliva gland back in 2011.  I had a radical neck dissection (both sides) to remove the gland and a few lymph nodes.  also a course of radiation.  Is your doctor one that has dealt with ACC before ?  Our site here is very knowledgable about tx's, and just a wonderful group of folks in general.  But I'm going to give you a link to another that is specific to adenoid cystic carcinoma.

    www.accrf.org and also www.accoi.org  there you will find everything from A to Z that you may find helpful through your journey with your dx.  I post on this board quite a bit also.  But come here because H/N dx's are very similar and our experiences can be shared for others that follow us. 

    You can private message me here anytime if there is anything I can help you with.  Best of luck !  Katie 

    acc

    hi katie,

    mine was in left nasal passage. 7.5 hrs of surgery they where unable to remove it all because it had spread to base of skull near brain and very close to optic nerve etc.

    hoping the radiation will knock it our or at least slow it down.. they removed nerves and muscle from left side of face now there is not much feeling and cannot open mouth very wide.  the good news is no scars or noticable disfigurment.

    yes I have seen accrf.org

    hope you are feeling better and look forward to helping each support each others journey.

    RK

  • rkliveson
    rkliveson Member Posts: 15
    #10
    thank you

    What a good feeling to know you are surrounded by peers of the same experience.  Thank you for a comforting welcome to an amazing group.  To see so many that have walked before me that now can look back and reflect, gives such hope to such a confusing time in my life.

    I understand the journey will not be pleasant, but I will beat it. Continue the fight and know I am now a part of it.

     

    RK

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #11
    rk, i just want to welcome

    rk, i just want to welcome you to our family and let you know we will take this trip with you.  it will not be an easy trip but one you will make and come out of with a few scars...lol.  i'm sorry you need to be here but very glad you found us.  know what to expect will be such a tremendous help for you.  i didn't find this group until i was do with tx so i had no idea what to expect.  this is a great group of people and i'm sure you will feel the same once you get to know us.  the info you get here should help your head to stop spinning so fast....lol.  wishing you the best and praying all goes well.  please keep us posted on your progress.  we will be here for you.  welcome!

    God bless you,

    dj

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