PET and CAT results came today

mswijiknyc
mswijiknyc Member Posts: 421
edited March 2014 in Caregivers #1
I posted this in the Head & Neck boards, so if you have seen this before, you aren't seeing things

Hubby Pat had his surgery Oct 1 - radical neck dissection and a complete laryngectomy. Right after his surgery, his doctor told me that if the surgery had been postponed by a week or two, he would have died. The tumor was growing very, very fast.

The doc took everything he could see and all the lymph nodes. He said he had to peel the tumor off of hubby's carotid artery. All that was left was microscopic cells.

That was a little over two months ago.

The doctor called with hubby's scan results today.

He has a tumor at the base of his skull. It is inoperable. The cancer has come back. You can feel it right behind his ear; it's about the size of a peach pit. And it's growing fast.

The doc had been talking about seeded radiation. Not anymore. And I don't know how he will make daily RTs when he can barely walk.

At least I know why his eye is so droopy all the time . . . .

Comments

  • 1Teresa
    1Teresa Member Posts: 67
    #2
    OMG
    How horrible :( Im sorry and I just dont know what to say
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #3
    There are no words. My
    There are no words. My thoughts and prayers are with you.
    Penny
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #4
    sad
    It is very sad and very hard to hear your news.

    Please know that many people are thinking about and praying for peace for you and your husband.

    Hugs.
  • karenbeth
    karenbeth Member Posts: 194
    #5
    So sorry
    I'm so sorry you and your husband got such terrible news. Stay strong.

    Karen
  • skipper85
    skipper85 Member Posts: 229
    #6
    This is hard to hear
    I'm so sorry to hear this devastating news. Is chemo an option? Surgery is not an option for my husband either. We will find out his last options tomorrow since he had an anaphylactic reaction to the Erbitux. I don't know if he'll go with chemo expecially after yesterday's experience. I don't know if it would be a quality of life issue at this point. I am just in agony and I know you must be too.

    I'm praying for you and your husband. I hate what cancer is doing to so many of my friends and family. Stay strong. We're always here if you need us. Meanwhile I know you'll make the most of every day and cherish every moment.

    I don't know why I have never read your profile before but I wasn't aware that this was a 9/11 cancer. I am from NY (Long Island) originally - now in NC but NY will always be my home. My heart went out to all the people of NY while we watched TV with horror as events unfolded. I couldn't stop crying and still have trouble watching any documentary about it. I love my country and the people of NY. Your husband is yet another victim. We are hearing more and more people who are developing all kinds of medical problems from 9/11. I hope your husband can get some kind of government help when he can no longer work.

    Wishing you the best. Don't forget to take care of you.

    (((BIG HUGS)))

    Skipper
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #7
    Thanks
    On top of all of this, went to the ER today to find out he has sciatica. At least he is taking pain meds for it.

    He has been adamant - no chemo. RT is the only option, but to travel there everyday is hard on him (1 1/2 hrs on public transit plus walking 7 blocks)

    His decision to make.
  • skipper85
    skipper85 Member Posts: 229
    #8
    mswijiknyc said:

    Thanks
    On top of all of this, went to the ER today to find out he has sciatica. At least he is taking pain meds for it.

    He has been adamant - no chemo. RT is the only option, but to travel there everyday is hard on him (1 1/2 hrs on public transit plus walking 7 blocks)

    His decision to make.

    Walking 7 blocks?

    He is going to need help to get to RT. At first he'll probably be able to do it himself and it might be good for his back to walk those 7 blocks but as time goes on the RT will wear him down.

    You're right it's his decision to make. Today my husband will be given his last option which is chemo (I already know from speaking with the doc). I really don't know if he'll go with it. I'm thinking no - especially if he has to lose his hair. Whatever his decision I'll support him. I would rather he have a good quality of life for a few months than be always feeling crappy for a year. Again, it's his decision. I just hope he can understand that his time is limited. He keeps talking about what he's going to do next summer and the summer after that. When he says stuff like that it upsets me because in all probability he won't be here come the summer.

    Keep us posted and try and be as strong and supportive as possible while still taking care of yourself.

    Skipper
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #9
    skipper85 said:

    Walking 7 blocks?

    He is going to need help to get to RT. At first he'll probably be able to do it himself and it might be good for his back to walk those 7 blocks but as time goes on the RT will wear him down.

    You're right it's his decision to make. Today my husband will be given his last option which is chemo (I already know from speaking with the doc). I really don't know if he'll go with it. I'm thinking no - especially if he has to lose his hair. Whatever his decision I'll support him. I would rather he have a good quality of life for a few months than be always feeling crappy for a year. Again, it's his decision. I just hope he can understand that his time is limited. He keeps talking about what he's going to do next summer and the summer after that. When he says stuff like that it upsets me because in all probability he won't be here come the summer.

    Keep us posted and try and be as strong and supportive as possible while still taking care of yourself.

    Skipper

    saw the other post
    saw that your husband chose chemo - thumbs up all the way! My husband made a similar comment - "save the ribbon for next Christmas." It's hard when I don't even know how much time I really have is.

    Taking things day by day. See what tomorrow brings. Put in a call to the RO for a phone appt. See if he calls back today. Getting a second opinion never really crossed my mind, but it's been brought up. I'm not sure if I want to put him through that.
  • luz del lago
    luz del lago Member Posts: 449
    #10
    Praying for strength and
    Praying for strength and courage for you and your husband. It can all be so overwhelming! Breathe, get a hug, from someone, anyone and take care of yourself.

    Lucy
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #11
    mswijiknyc said:

    Thanks
    On top of all of this, went to the ER today to find out he has sciatica. At least he is taking pain meds for it.

    He has been adamant - no chemo. RT is the only option, but to travel there everyday is hard on him (1 1/2 hrs on public transit plus walking 7 blocks)

    His decision to make.

    sciatica and walking
    If it is sciatica, walking will be uncomfortable but not impossible.

    There are many agencies that assist people who have cancer in getting to their appointments. Please check with the doctor's office to see if they can give you referals for help. Very common where we are but this is a much smaller town we live in, probably. Also, I would check with the local branch of the American Cancer Society. They may have some insight into this kind of help.

    Sometimes the assistance comes in the form of money to pay for a cab to drive your husband to his appointment.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #12
    luz del lago said:

    Praying for strength and
    Praying for strength and courage for you and your husband. It can all be so overwhelming! Breathe, get a hug, from someone, anyone and take care of yourself.

    Lucy

    I'm so sorry; that really sucks.
    Just a hug.

    Please tell your husband that I've been on chemo almost continuusly for the past 2 years. Chemo is do-able. I don't regret getting chemo. I know it's keeping me alive and they've come a long way in managing chemo side affects with pre-chemo meds. Each new chemo they switch me to (3 different drugs so far), I think "I'll try it. If it's too awful I can always stop." & so far it's always been do-able. He could TRY chemo and just see. It may not be the nightmare he thinks it will be.

    anyway, (((((HUG))))).
  • debbieg5
    debbieg5 Member Posts: 167
    #13
    larys
    I saw your post on H/N board about sciatica but I didn't realize your husband was a lary.
    Mine had surgery on Sept 16. Removed larynx, lymph nodes and some tissue from tongue. Also had free flap built with tissue from his thigh. All this was done after Cyberknife radiation and chemo had been unsuccessful. This surgery was radical with life altering effects but we figured it would be worth it to get rid of the cancer once and for all. But he didn't seem to recuperate like he should and kept complaining of continued pain in his throat, ear and head. The ENT suggested an MRI which revealed something suspicious at base of tongue. Biopsy showed it was malignant. Subsequent PET know shows a spot in upper, right lung. ENT and Onc said this is obviously agressive and they can't cure it but perhaps hold it off for awhile with chemo.
    So you begin to feel that all the cutting done was a huge waste! On top of that, now he can't even talk to explain what he feels. We just started chemo this week so we will see where that leads.
    Be glad your husband talks in terms of the future. Even if he knows different deep down, it's a much better attitude to have. Mine just keeps saying he doesn't have much time left. With his attitude, he is probably right.
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #14
    debbieg5 said:

    larys
    I saw your post on H/N board about sciatica but I didn't realize your husband was a lary.
    Mine had surgery on Sept 16. Removed larynx, lymph nodes and some tissue from tongue. Also had free flap built with tissue from his thigh. All this was done after Cyberknife radiation and chemo had been unsuccessful. This surgery was radical with life altering effects but we figured it would be worth it to get rid of the cancer once and for all. But he didn't seem to recuperate like he should and kept complaining of continued pain in his throat, ear and head. The ENT suggested an MRI which revealed something suspicious at base of tongue. Biopsy showed it was malignant. Subsequent PET know shows a spot in upper, right lung. ENT and Onc said this is obviously agressive and they can't cure it but perhaps hold it off for awhile with chemo.
    So you begin to feel that all the cutting done was a huge waste! On top of that, now he can't even talk to explain what he feels. We just started chemo this week so we will see where that leads.
    Be glad your husband talks in terms of the future. Even if he knows different deep down, it's a much better attitude to have. Mine just keeps saying he doesn't have much time left. With his attitude, he is probably right.

    miss deb
    Think we met as fellow lary women on another topic. It's ok, if my head wasn't attached I'd forget where I put it.

    For me it's hard when he speaks of the future because it's so uncertain. Not only that the look on his face sometimes when he says it . . . . I know what he's thinking, because I'm thinking the same thing.

    Know how you feel. The first thing that made me fall in love with Pat was his voice. All I have now is his voicemail message.

    W#*&$^#$@#@)*&^@#$)(&@#$)(^@#!!!!!!!!!!!!!!!
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #15
    debbieg5 said:

    larys
    I saw your post on H/N board about sciatica but I didn't realize your husband was a lary.
    Mine had surgery on Sept 16. Removed larynx, lymph nodes and some tissue from tongue. Also had free flap built with tissue from his thigh. All this was done after Cyberknife radiation and chemo had been unsuccessful. This surgery was radical with life altering effects but we figured it would be worth it to get rid of the cancer once and for all. But he didn't seem to recuperate like he should and kept complaining of continued pain in his throat, ear and head. The ENT suggested an MRI which revealed something suspicious at base of tongue. Biopsy showed it was malignant. Subsequent PET know shows a spot in upper, right lung. ENT and Onc said this is obviously agressive and they can't cure it but perhaps hold it off for awhile with chemo.
    So you begin to feel that all the cutting done was a huge waste! On top of that, now he can't even talk to explain what he feels. We just started chemo this week so we will see where that leads.
    Be glad your husband talks in terms of the future. Even if he knows different deep down, it's a much better attitude to have. Mine just keeps saying he doesn't have much time left. With his attitude, he is probably right.

    miss deb
    Think we met as fellow lary women on another topic. It's ok, if my head wasn't attached I'd forget where I put it.

    For me it's hard when he speaks of the future because it's so uncertain. Not only that the look on his face sometimes when he says it . . . . I know what he's thinking, because I'm thinking the same thing.

    Know how you feel. The first thing that made me fall in love with Pat was his voice. All I have now is his voicemail message.

    W#*&$^#$@#@)*&^@#$)(&@#$)(^@#!!!!!!!!!!!!!!!

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