Hello again

Lisams
Lisams Member Posts: 4
in Head and Neck Cancer #1

Hi 

it has been some time since I last checked in and it is nice to see the same names and faces of the people I read about when I was going through my cancer treatment.

I am still recovering from my rad treatment, which ended May 1st of this year. I was diagnosis last week with cancer..... Again.....same one! I am still in shock and am waiting for the ole tumor board appts, second opinions, ect..

I am curious if anyone out there has had back to back radiation treatments? My primary ca was an adenocarcinoma in my hard and soft palette. My second and now third is in my neck and lymph nodes.  

I guess i am I am trying to guess what the doctors plan of action will be....

any words or knowledge or opinions are welcome :)   The waiting and wondering is so hard, especially when you aren't going in blind!

 

Thanks,

Lisa

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #2
    Been there

    Take a deep breath.  You will get through it, I did.  I know the shock of hearing you have cancer again.  You will probably be heading for a neck dissection followed by radiation.  I didn't have chemo the first or second time, but I did have it with #3.  You might find out if your doctor will recommend chemo this time.  Seems it makes the radiation more effective.  Rads did not do as much damage to me the second time.  Did have taste problem and burn but I recovered quicker.  Chemo kicked me in the behind, that was another story.

    Very doable.  Get your team together.  Check out the Superthread.  Stay in touch.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    I've been through it three times

    What I can tell you is there are a lot of moving parts to your situation, and it would be unfair to second guesss what the tumor board will come up with.  It depends on so many things, like previous radiatio fields, curret distribution of tumor, etc.  I know firsthand how hard it is for you right now.  But you aren't alone, some of the rest of us have been pretty much where you are now.  You have to just put one foot in front of the other for a bit.

     

    best regards

     

    Pat

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #4
    Lisa

    Sorry you have to fight a second time. Guess I am  a lucky one (so far) and only had to perform the dance once so I can't be of any help. Keep in mind we are all here for you and will be glad to help you through anything thrown your way. Phrannie is well known for big pockets and tucking people in for tough rides. Keep us posted.

    Pulling for you

          Jeff

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    lisa, i'm so sorry u have to

    lisa, i'm so sorry u have to battle again!!  i had 2 battle twice and that was rough, i can't even imagine 3 times.  just know that we r here 4 u and we'll b cheering u on.  keep us posted on ur progress.  saying prayers for u.

    God bless u.

    dj

  • j4mie
    j4mie Member Posts: 218
    #6
    Hi Lisa

    Just wanted to say hello...we are relatively new here. My husband is going through rads now. He was diagnosed with tonsil cancer in July, and we are currently a little more than halfway through his radiation treatments. I don't have much advice to offer, but want you to know that we are sending lots of good thoughts and prayers your way as you go into your second fight. Stay strong...

    Jamie

  • Lisams
    Lisams Member Posts: 4
    #7
    Thank you everyone. So nice

    Smile

    Thank you everyone. So nice to not feel alone in my fight and having so many wonderful people supporting and praying for me.

    Meeting radiologist Tuesday and tumor board Thursday. Should know more by week end!

    Lisa

  • ValeIT
    ValeIT Member Posts: 23
    #8
    Lisams said:

    Thank you everyone. So nice

    Smile

    Thank you everyone. So nice to not feel alone in my fight and having so many wonderful people supporting and praying for me.

    Meeting radiologist Tuesday and tumor board Thursday. Should know more by week end!

    Lisa

    Hello!

    Hello, I am Italian .... sorry for my english. I use online translator.

    Your tumor is in the salivary glands?

    It is mucoepidermoid carcinoma or other type?

    You know the degree of malignancy?

  • katenorwood
    katenorwood Member Posts: 1,912
    #9
    hello Lisa !

    I too was dx'd with a form of adeno (mine is a subtype adenoid) and was in the right salivary gland.  On your pathology report it is very important to get this distiguished !  Adenoid has 3 specific tissue types (hard, tubular, cribform - they call this histology).  The reason I'm mentioning this is because this specific dx acts differently and not much is known.  Tx's would be similar, but not as effective.  If you do have this specific type of adeno....please check with these sites www.accrf and www.accoi.  Tons of information you will need to know !  And also if possible to have a specialist that has dealt with acc before is vital !  I wish you luck, and I'm sure everything will turn out positive !  Katie

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #10
    I'm so sorry

    that you're having to deal with this again!  You'll be in my prayers!!  There are some amazing warriors on this site who have fought and WON multiple times.  You can gain a wealth of knowledge from them.  I come here for ALL of my questions and concerns.  GREAT group of people :)

  • hwt
    hwt Member Posts: 2,328 Member
    #11
    TracyLynn72 said:

    I'm so sorry

    that you're having to deal with this again!  You'll be in my prayers!!  There are some amazing warriors on this site who have fought and WON multiple times.  You can gain a wealth of knowledge from them.  I come here for ALL of my questions and concerns.  GREAT group of people :)

    Lisa

    So sorry for your situation. After 15 months of NED, I found myself in the same boat. My brother was talking to his ONC at Mayo Clinic who told him "don't let anyone tell her that she can't be radiated twice". Doctors in St Louis were very negative because my tumor was wrapped around the carotid artery, so I did go to Mayo. They were postivie and gave me the hope that I needed. I had SBRT tx. Five very strong, very precise doses of radiation. Virtually no side effects. After 3 months (1st week of December) I will find out if tx was successful. To-date, I feel fine. I know the news is devastating for you, as it was for me. Pleased to see that you are getting all of your facts to make the most educated decisions. You can see from other posts that the battle can be won more than once. Stay stong!

     

    God Bless,

     

    Candi

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