New Member Sort Of

survivorfam
survivorfam Member Posts: 41
edited March 2014 in Head and Neck Cancer #1
I am new to the Head and Neck discussion board but not to the Survivors Network. My husband was diagnosed with esophageal cancer in July 2009. He was treated, had surgery, and things looked good in Dec.2009. Cancer reappeared in a lymph node in April 2010. More chemo and radiation. Had a clear PET/CT in Sept. I was diagnosed with SCC of tongue Oct.8. We had a very nice month where cancer wasn't the focus of our every thought.

My tumor was removed Oct. 1 and my doc referred me to MDAnderson. After a CT they did an ultra sound and needle biopsy that came back negative. I had more surgery to increase the margins and came home for radiation. I had a PET scan here and the same node + 1 lit up on the opposite side from my tumor. Tumor board looked at everything and decided the nodes were negative and we have proceeded with radiation. I completed my 15th treatment today and am officially halfway done.

Both the tumor board at MDA and here weren't worried about those nodes but prescribed aggressive radiation. I feel pretty comfortable since both facilities came up with the same treatment plan but you always wonder and second guess yourself.

My husband had a follow-up PET in Dec. and his node lit up again so we are a 2 cancer household. We are pretty rare as we were both diagnosed under the age of 50 and within 18 months of each other even though we have 2 different kinds of cancer. We will find out tomorrow what my husband's prognosis is.

Being in this situation has left us in limbo as I'm sure it has done with many of you. I have a great deal of faith but sometimes am lonely for others to talk to. Most people can't really hang in very long for a situation like ours. I guess I'm just looking for people who won't be horrified to talk about how I feel during this fight.

Thanks,
Jane

Comments

  • adventurebob
    adventurebob Member Posts: 691
    #2
    Welcome
    Hi Jane,

    Welcome to H&N. I'm saddened by how you ended up here and find it difficult to wrap my mind around your situation and what that would be like. I'd like to just say "that's not fair". I don't really say that about anything but I will for you. I just finished up treatment for npc with bone mets and understand the treatment issues you may be going through and I'm always here to talk and won't be horrified by how you feel. Welcome and condolences for the painful path that brought you here. Come on in and make yourself comfortable.

    Bob
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #3
    WELCOME
    Jane, welcome, the best people in the world reside here. Wow, just do not know what to say except I will pray for you and if you need to vent, then vent away!!

    Best to you and your husband.

    Mike
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi Jane

    Welcome to Head & Neck, please don’t give up hope, I had this nasty stuff 3 times before it decided to take a rest for a while or go on vacation. It is very hard when both of you have it as I know I lean on my wife caregiver so much that I would not know what to do with out her giving me 100% of her attention. I too go to MD Anderson and I really like them as I get there full attention when I am there. I am hoping and praying for you both, take care and please keep posting on how you are both doing.

    Hondo
  • ekdennie
    ekdennie Member Posts: 238 Member
    #5
    understanding
    I understand about being lonely even when surrounded by people and your faith (without someone who has been there it can be rough sometimes). sometimes it just helps having someone who has been there to talk to. this message board has been such a blessing for me, I hope it will be for you as well. good luck with the rest of your radiation treatments...I had 30 as well. It has to be hard to have you both going through cancer treatments an doctor appointments at the same time. wishing you both a speedy recovery, good prognosis's and great doctors!

    if you ever need to just rant, vent, scream, talk, etc...there are some great people on here who would love to "listen".
  • stevenl
    stevenl Member Posts: 587
    #6
    luv4lacrosse said:

    WELCOME
    Jane, welcome, the best people in the world reside here. Wow, just do not know what to say except I will pray for you and if you need to vent, then vent away!!

    Best to you and your husband.

    Mike

    Welcome
    Hi Jane,

    Hoping for the best to you and your husband and know that you will be in my prayers.

    Best,
    Steve
  • Hal61
    Hal61 Member Posts: 655
    #7
    Odds
    Hi Jane, sorry for what you and your husband are going through. I'm with Bob, I've never thought about fair or not fair, but your situation is not right. You're already outside the odds, so no reason not to hope for a recovery for both of you. I wish there was someone to punch, we would all like to punch someone for you.

    best, Hal
  • nifty
    nifty Member Posts: 12
    #8
    Seeing Double
    Hi Jane, so sorry to hear your news. I am relatively new to the forum, I am a care taker - but spend a lot of time in this discussion as my dad has head/neck cancer. You are showing amazing strength in dealing with your situation. A wonderful thing is that you are active in your situation and reaching out to get support. The best to you and your husband - vent anytime, that is what something like this online community is here for. Your situation is unique and scary, but no doubt will provide opportunities to strengthen your relationship and help you learn things about each other (and yourselves) you did not know. I will look for your updates and keep my fingers crossed that all goes well and turns out for the best. Positive thoughts and prayers your way!! I agree with the other posts in that this is NOT fair. I know you cannot dwell on that, but sometimes it feels good to say it out loud - with passion!!!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
    nifty said:

    Seeing Double
    Hi Jane, so sorry to hear your news. I am relatively new to the forum, I am a care taker - but spend a lot of time in this discussion as my dad has head/neck cancer. You are showing amazing strength in dealing with your situation. A wonderful thing is that you are active in your situation and reaching out to get support. The best to you and your husband - vent anytime, that is what something like this online community is here for. Your situation is unique and scary, but no doubt will provide opportunities to strengthen your relationship and help you learn things about each other (and yourselves) you did not know. I will look for your updates and keep my fingers crossed that all goes well and turns out for the best. Positive thoughts and prayers your way!! I agree with the other posts in that this is NOT fair. I know you cannot dwell on that, but sometimes it feels good to say it out loud - with passion!!!

    welcome
    Jane, so sorry that you found yourself here for both you and your husband. Wishing you both strength and health and wellness.

    sweet
  • Pam M
    Pam M Member Posts: 2,196
    #10
    Welcome
    Like the others, glad you found the site; sorry you have reason to be here. I know what you mean about folks being horrified to talk about what's going on (all of us here do). I think it's very often a matter of "if we don't talk about it, it's not so bad - I can pretend it'll be just fine".
    Even considering the company you're in here, you've got an awful lot on your plate. I hope it goes your way. Keep us up to date.
  • rozaroo
    rozaroo Member Posts: 665
    #11
    Pam M said:

    Welcome
    Like the others, glad you found the site; sorry you have reason to be here. I know what you mean about folks being horrified to talk about what's going on (all of us here do). I think it's very often a matter of "if we don't talk about it, it's not so bad - I can pretend it'll be just fine".
    Even considering the company you're in here, you've got an awful lot on your plate. I hope it goes your way. Keep us up to date.

    Jane
    Wellcome to the board. I am sorry that you & your hubby have both been hit with cancer. I understand how you feel about the lonliness. I just was not comfortable talking about my illness to anyone & they really did not wish to hear it. Now I am much better & the phone is
    ringing again. I would much rather be with real people & all the wonderfull people I have met on CSN. I wish you both my best& will keep you in my prayer's.
    God Bless
    Roz

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