Floor of the mouth with lung metastasis

dmdRN83
dmdRN83 Member Posts: 5
in Head and Neck Cancer #1

Good Evening All,

I am new to this site. I've read through many of the discussion threads. But I don't see answers to my question. My husband was diagnosed with floor of the mouth SCC in 2011. He had surgery followed by radiation/chemo x 6 weeks. Shortly thereafter they found and followed several nodules in both lungs. After they reached >1cm size, they biopsied them and they were SCC mets. 10 days of radiation and they responded fairly well. A few months later, new nodules appeared. More radiation x 10 days. The next CT indicated no decrease in size, but not increase either. But now there are enlarged chest lymph nodes. All they said was "well, this is pretty good". Is there anyone here with similar course of events or does anyone know where this is headed. It doesn't sound good to me, and I'm bracing myself for the future. But not knowing is sometimes worse than the actual fate. Please, any comments would be appreciated.

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    Lungs

    My husband's SCC which started as laryngeal cancer (radiation, chemo and then surgery and as of last January was still NED), then a second primary (SCC) at the cervical of his esophagus in May 2012 (more radiation and chemo) then in January 2013 we found out that it had returned at second primary and there were nodules in his right lung that had been growing.  Needle biopsy proved to be cancer.  Only thing offered was chemo and we were told upfront it wouldn't cure only prolong and possible hasten.  He declined all further treatment (something he had already told me he would do before we found out of the return and spread).   Today he is still here albiet pain controlled by medication, low energy level, has been on hospice for 6 months.  He is still able to do small things in the yard without giving out and sleeps a good part of the day and doesn't need help with anything.  We have no idea how much his cancer has spread.  We asked about a CT scan in September before he went on hospice, but our oncologist declined to do one.  All we can think is that apparently these cancers are slow growing for which we are thankful.  I also know that at any time his condition can worsen but we feel that the only one who knows the future is the man upstairs and we take each day as it comes.

    Wishing you peace and comfort -- Sharon

  • dmdRN83
    dmdRN83 Member Posts: 5
    #3
    Ladylacy said:

    Lungs

    My husband's SCC which started as laryngeal cancer (radiation, chemo and then surgery and as of last January was still NED), then a second primary (SCC) at the cervical of his esophagus in May 2012 (more radiation and chemo) then in January 2013 we found out that it had returned at second primary and there were nodules in his right lung that had been growing.  Needle biopsy proved to be cancer.  Only thing offered was chemo and we were told upfront it wouldn't cure only prolong and possible hasten.  He declined all further treatment (something he had already told me he would do before we found out of the return and spread).   Today he is still here albiet pain controlled by medication, low energy level, has been on hospice for 6 months.  He is still able to do small things in the yard without giving out and sleeps a good part of the day and doesn't need help with anything.  We have no idea how much his cancer has spread.  We asked about a CT scan in September before he went on hospice, but our oncologist declined to do one.  All we can think is that apparently these cancers are slow growing for which we are thankful.  I also know that at any time his condition can worsen but we feel that the only one who knows the future is the man upstairs and we take each day as it comes.

    Wishing you peace and comfort -- Sharon

    I realize there is no medical

    I realize there is no medical reason to scan my husband more frequently than they do, but I would like to know what's going on (control issues?). That's one of the hardest things to deal with as a caregiver - the not knowing. I love my husband dearly, been married 30+ years. BUT, my life is on hold, has been for 3 years now, and watching this vital man deteriorate is devastating. OK, done whining. Thank you and good luck to you and your husband.

     

  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #4
    Lung METS

    My original H&N cancer also spread to my lungs and Mediasinal nodes. I went 20 months NED and thank god that I developed a cellulitis in my face neck and upper chest as that CT revealed 3 tumors in my lower left lobe and Mediastinal nodes. I am on my 2nd chemo regiment since Sept of 2012 and so far I have little to no visible disease in my lungs and nodes. since the cancer was found in my Mediastinal nodes, i am no longer considered as cureable, just treatable. Life for me is still pretty good, with the exception of the side effects of the Taxotere. i have had pneumonia 3 times, PE's in my lung that blood thinners have fixed and fluid in my pleural space that has been fixed with a pleural drain that allows me to "self tap" the fluid. One I dry out, the drain will come out. even with all of this, I continue to work out at the gym 5-6 days per week, and plan my activities around my bad week of chemo.

    In short, you definitely can get past a METS situation. I attribute trying to keep myself in the best possible physical shape essential to being able to keep fighting this beast for as long as I have.

    Stay strong, stay positive!!

    Best

    Mike

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    dmd, I don't know about the

    dmd, I don't know about the mets but wanted to say welcome to our family and i'm sorry you need to be here.  there are several people here who have had recurrences or mets that may be able to shead some light for you.  i agree with you, as most here will, the "not knowing" is the hard part.  the waiting to know can really send your mind racing.  try not to let your mind run to far or too fast.  enjoy today and let tomorrow's worries happen tomorrow.  saying a prayer for you and your husband.  i hope you will continue to post and also let us know how he's doing.

    God bless you,

    dj

     

  • dmdRN83
    dmdRN83 Member Posts: 5
    #6
    luv4lacrosse said:

    Lung METS

    My original H&N cancer also spread to my lungs and Mediasinal nodes. I went 20 months NED and thank god that I developed a cellulitis in my face neck and upper chest as that CT revealed 3 tumors in my lower left lobe and Mediastinal nodes. I am on my 2nd chemo regiment since Sept of 2012 and so far I have little to no visible disease in my lungs and nodes. since the cancer was found in my Mediastinal nodes, i am no longer considered as cureable, just treatable. Life for me is still pretty good, with the exception of the side effects of the Taxotere. i have had pneumonia 3 times, PE's in my lung that blood thinners have fixed and fluid in my pleural space that has been fixed with a pleural drain that allows me to "self tap" the fluid. One I dry out, the drain will come out. even with all of this, I continue to work out at the gym 5-6 days per week, and plan my activities around my bad week of chemo.

    In short, you definitely can get past a METS situation. I attribute trying to keep myself in the best possible physical shape essential to being able to keep fighting this beast for as long as I have.

    Stay strong, stay positive!!

    Best

    Mike

    Wow - inspiring - I'm not

    Wow - inspiring - I'm not sure my husband would go through all that. When he was diagnosed, he told me he wouldn't fight it. I cried and he did. But how much do I ask of him and expect of him? One day at a time - I supposed - thank you for the encouragement.

     

  • dmdRN83
    dmdRN83 Member Posts: 5
    #7
    debbiejeanne said:

    dmd, I don't know about the

    dmd, I don't know about the mets but wanted to say welcome to our family and i'm sorry you need to be here.  there are several people here who have had recurrences or mets that may be able to shead some light for you.  i agree with you, as most here will, the "not knowing" is the hard part.  the waiting to know can really send your mind racing.  try not to let your mind run to far or too fast.  enjoy today and let tomorrow's worries happen tomorrow.  saying a prayer for you and your husband.  i hope you will continue to post and also let us know how he's doing.

    God bless you,

    dj

     

    Thanks, DJ. I just need to

    Thanks, DJ. I just need to reach out to someone who's been there!

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    dmdRN83 said:

    Thanks, DJ. I just need to

    Thanks, DJ. I just need to reach out to someone who's been there!

     

    dmd, there are several here

    dmd, there are several here who have SURVIVED.  yes, it is a hard road to travel but your husband can do it.  you must believe.  i hope your husband never gives up but should he decide no more tx, you will have to respect his decision as hard as that may be.  there are a couple people here (different cancer) who have refused tx and take it one day at a time.  their caregivers respect their decision altho its very hard on them.  you and your husband will be in my prayers.  please remember, we are survivors here and several here have walked the same path as your husband and are still here to help others through their journey.   we will be here to help you thru yours also.  come here as often as you like.  no question is off limits.  we are here to help you with any questions, pick you up when you're down, make you smile when you're sad, give you a cyber hug when you feel alone, and any other reason you need us.  you are not alone on this journey.

    God bless you and your husband,

    dj

  • jim and i
    jim and i Member Posts: 1,788 Member
    #9
    dmdRN83 My husband was

    dmdRN83 My husband was originally diagnosed with stage IV base of tongue. He was treated with 40 rads and 2 Chemo. After treatment the scan showed one small node in upper right lung. We were told to wait and watch for three months. That scan showed numerous nodes in both lungs and the original had grown. They biopsied the original and it was cancer but couldn't tell if it was original cancer or new primary. Husband refused more treatment and was unable to do anymore chemo because the first two damaged his kidneys. We were told to enjoy life and he might have less than a year to live. One year later we moved and found a local oncologist. Scan showed a little change in nodes but not much. He gave Jim less than a year. Jim refused more scans after that and over a year later the doctor talked him into a scan to see where at since Jim was doing fine. Pet came back this past December. News was not good. Cancer was back in tongue on left side, left mandable, two ribs and both sides of the sternum. Two weeks ago Jim took a turn for the worse. He is going down fast. He is now in hospice and bed ridden. When I asked the nurse if I should prepare the children (all grown) she said he could have a few days, weeks or a month or two, it is hard to say. I understand the not knowing. Some days Jim is so bad I am afraid to leave his side and others he is ok, considering. So I wait, pray and believe that God is in control. I pray for your husbands comfort and healing as well as for you. This is a great group of people. Someone is always here to help.

    Blessings,

    Debbie

  • dmdRN83
    dmdRN83 Member Posts: 5
    #10
    jim and i said:

    dmdRN83 My husband was

    dmdRN83 My husband was originally diagnosed with stage IV base of tongue. He was treated with 40 rads and 2 Chemo. After treatment the scan showed one small node in upper right lung. We were told to wait and watch for three months. That scan showed numerous nodes in both lungs and the original had grown. They biopsied the original and it was cancer but couldn't tell if it was original cancer or new primary. Husband refused more treatment and was unable to do anymore chemo because the first two damaged his kidneys. We were told to enjoy life and he might have less than a year to live. One year later we moved and found a local oncologist. Scan showed a little change in nodes but not much. He gave Jim less than a year. Jim refused more scans after that and over a year later the doctor talked him into a scan to see where at since Jim was doing fine. Pet came back this past December. News was not good. Cancer was back in tongue on left side, left mandable, two ribs and both sides of the sternum. Two weeks ago Jim took a turn for the worse. He is going down fast. He is now in hospice and bed ridden. When I asked the nurse if I should prepare the children (all grown) she said he could have a few days, weeks or a month or two, it is hard to say. I understand the not knowing. Some days Jim is so bad I am afraid to leave his side and others he is ok, considering. So I wait, pray and believe that God is in control. I pray for your husbands comfort and healing as well as for you. This is a great group of people. Someone is always here to help.

    Blessings,

    Debbie

    Debbie,
    OMG - I am so sorry.

    Debbie,

    OMG - I am so sorry. How do YOU deal with it all? Our lives are on hold; we grieve; we watch as our loved ones fade away. I always thought I was a strong person, but I dunno about this!

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #11
    jim and i said:

    dmdRN83 My husband was

    dmdRN83 My husband was originally diagnosed with stage IV base of tongue. He was treated with 40 rads and 2 Chemo. After treatment the scan showed one small node in upper right lung. We were told to wait and watch for three months. That scan showed numerous nodes in both lungs and the original had grown. They biopsied the original and it was cancer but couldn't tell if it was original cancer or new primary. Husband refused more treatment and was unable to do anymore chemo because the first two damaged his kidneys. We were told to enjoy life and he might have less than a year to live. One year later we moved and found a local oncologist. Scan showed a little change in nodes but not much. He gave Jim less than a year. Jim refused more scans after that and over a year later the doctor talked him into a scan to see where at since Jim was doing fine. Pet came back this past December. News was not good. Cancer was back in tongue on left side, left mandable, two ribs and both sides of the sternum. Two weeks ago Jim took a turn for the worse. He is going down fast. He is now in hospice and bed ridden. When I asked the nurse if I should prepare the children (all grown) she said he could have a few days, weeks or a month or two, it is hard to say. I understand the not knowing. Some days Jim is so bad I am afraid to leave his side and others he is ok, considering. So I wait, pray and believe that God is in control. I pray for your husbands comfort and healing as well as for you. This is a great group of people. Someone is always here to help.

    Blessings,

    Debbie

    debbie, i'm so sorry jim is

    debbie, i'm so sorry jim is doing worse.  I didn't know he was bedridden, that has to be very hard on both of you.  its a shame that you and jim are going thru this.  you and your family are in my prayers for comfort and strength.

    God bless you,

    dj

  • hwt
    hwt Member Posts: 2,328 Member
    #12
    debbiejeanne said:

    debbie, i'm so sorry jim is

    debbie, i'm so sorry jim is doing worse.  I didn't know he was bedridden, that has to be very hard on both of you.  its a shame that you and jim are going thru this.  you and your family are in my prayers for comfort and strength.

    God bless you,

    dj

    Debbie & dmd

    Debbie, so sorry to hear, my prayers for Jim continue. Dmd, don't give up hope. You can see that Mike's clinical trial has served him well. I am also dealing w/recurrence. Originally around carotid artery w/o much hope in STL, I went to Mayo and had 5 days rads and it was gone. Now another node on opposite side and undergoing tx which last week's scan said was working. 

    God bless,

    Candi

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