Looking for hope

Elizabeth 1978
Elizabeth 1978 Member Posts: 20
in Head and Neck Cancer #1
Today was a sad day for me, I had bad news after bad news. After six weeks after treatment my husband had a scan and it show it's has return, the drs for radiology and chemo told me that they were sorry but no more radiation can be given and the chemo told me they can give more. The ENT will see us tomorrow . I feel so devasted and I can only imagine how my love one feels. What do I do now and what's to expect ???? I feel my world has come down and a train has Arjun me over.
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Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I'd be looking at a second opinion on this one.....
    there are clinical trials out there, in many different phases....We heard just the other day of a physician who wouldn't operate on one of our memebers 80 something old mother....they went somewhere else, and found a Dr. who would...last heard mom is doing fine. Maybe contacting a Major Cancer Center close to you....

    Don't give up hope yet...

    p
  • ditto1
    ditto1 Member Posts: 660
    #3
    phrannie51 said:

    I'd be looking at a second opinion on this one.....
    there are clinical trials out there, in many different phases....We heard just the other day of a physician who wouldn't operate on one of our memebers 80 something old mother....they went somewhere else, and found a Dr. who would...last heard mom is doing fine. Maybe contacting a Major Cancer Center close to you....

    Don't give up hope yet...

    p

    Sad yes
    its tough enough to deal with this crap once let alone more than once. Its ok to feel like you have been run over and your spouse as well, but as P51 said do not give up hope, many folks have beaten cancer more than once, nothing technical here just a reality. So after the shock wears off talk to your doctors and get a plan to fight again. Please understand I know it hurts to hear its back and I in no way know that I would not feel the same as you both do, but I pray we all fight and as some have said on this blog they will not go easy and will kick cancers buttttt every time they need to, win lose or draw. You will be in our prayers.
  • hwt
    hwt Member Posts: 2,328 Member
    #4
    ditto1 said:

    Sad yes
    its tough enough to deal with this crap once let alone more than once. Its ok to feel like you have been run over and your spouse as well, but as P51 said do not give up hope, many folks have beaten cancer more than once, nothing technical here just a reality. So after the shock wears off talk to your doctors and get a plan to fight again. Please understand I know it hurts to hear its back and I in no way know that I would not feel the same as you both do, but I pray we all fight and as some have said on this blog they will not go easy and will kick cancers buttttt every time they need to, win lose or draw. You will be in our prayers.

    Elizabeth
    My heart goes out to you and your husband. My family has taught me to never give up. Phrannie spoke above about my Mother. She is 87 and was diagnosed with an early stage stomach cancer. Her hospital of choice said they would not consider surgery. We needed to hear it from Siteman Cancer Center where I had my treatment or Mayo where my brother had his. We contacted Siteman first because it is local and last Wednesday she had successful lapiscopic surgery. She is doing well and expected to leave the hospital tomorrow. My brother had two primary cancers, lung and kidney, both caught early, treated at Mayo and cancer free two years now. My cousin had melanoma mets and was told to get his affairs in order, he found a clinical trial and has been cancer free 8 years. I hope that you not only find optimism in the blessings my family has had but that it encourages you and your husband to seek out all of the options available to you. God bless!
    Candi
  • Elizabeth 1978
    Elizabeth 1978 Member Posts: 20
    #5
    hwt said:

    Elizabeth
    My heart goes out to you and your husband. My family has taught me to never give up. Phrannie spoke above about my Mother. She is 87 and was diagnosed with an early stage stomach cancer. Her hospital of choice said they would not consider surgery. We needed to hear it from Siteman Cancer Center where I had my treatment or Mayo where my brother had his. We contacted Siteman first because it is local and last Wednesday she had successful lapiscopic surgery. She is doing well and expected to leave the hospital tomorrow. My brother had two primary cancers, lung and kidney, both caught early, treated at Mayo and cancer free two years now. My cousin had melanoma mets and was told to get his affairs in order, he found a clinical trial and has been cancer free 8 years. I hope that you not only find optimism in the blessings my family has had but that it encourages you and your husband to seek out all of the options available to you. God bless!
    Candi

    Looking for hope
    Bernard and I got married Iin 2010 n just before sept 25th 2011, I've learnt that he had cancer , we just celebrated 2 years of marriage this sep n he is only 39, I feel like he is been treated like just a number in the system, n we are just given up.
  • Elizabeth 1978
    Elizabeth 1978 Member Posts: 20
    #6
    hwt said:

    Elizabeth
    My heart goes out to you and your husband. My family has taught me to never give up. Phrannie spoke above about my Mother. She is 87 and was diagnosed with an early stage stomach cancer. Her hospital of choice said they would not consider surgery. We needed to hear it from Siteman Cancer Center where I had my treatment or Mayo where my brother had his. We contacted Siteman first because it is local and last Wednesday she had successful lapiscopic surgery. She is doing well and expected to leave the hospital tomorrow. My brother had two primary cancers, lung and kidney, both caught early, treated at Mayo and cancer free two years now. My cousin had melanoma mets and was told to get his affairs in order, he found a clinical trial and has been cancer free 8 years. I hope that you not only find optimism in the blessings my family has had but that it encourages you and your husband to seek out all of the options available to you. God bless!
    Candi

    Looking for hope
    Bernard and I got married Iin 2010 n just before sept 25th 2011, I've learnt that he had cancer , we just celebrated 2 years of marriage this sep n he is only 39, I feel like he is been treated like just a number in the system, n we are just given up.
  • hwt
    hwt Member Posts: 2,328 Member
    #7
    Elizabeth 1978 said:

    Looking for hope
    Bernard and I got married Iin 2010 n just before sept 25th 2011, I've learnt that he had cancer , we just celebrated 2 years of marriage this sep n he is only 39, I feel like he is been treated like just a number in the system, n we are just given up.

    Elizabeth
    What type of cancer does Bernard have? Has he had surgery or just chemo and radiation? I'm very sorry you don't feel you have received any compassion from the medical people treating your husband. Hope tomorrow will bring brighter news. Where do you live? Is your husband getting treated at a hospital that specializes in cancer treatment?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    hwt said:

    Elizabeth
    What type of cancer does Bernard have? Has he had surgery or just chemo and radiation? I'm very sorry you don't feel you have received any compassion from the medical people treating your husband. Hope tomorrow will bring brighter news. Where do you live? Is your husband getting treated at a hospital that specializes in cancer treatment?

    and
    where exactly is this recurrance, and how large?

    Pat
  • KareGiver
    KareGiver Member Posts: 301 Member
    #9
    longtermsurvivor said:

    and
    where exactly is this recurrance, and how large?

    Pat

    Elizabeth,
    When we were told my husband's cancer had metastasized (less than a year out of the initial treatment), our minds started spinning. It truly took a good month (or two) to grasp the reality of it all.
    My husband cannot have anymore radiation and was having chemo to keep the beast at bay. He IS hanging in there. As much as I hate for him to go through this again - and, honestly, it's not easy - being proactive with treatment is "comforting."
    Give yourself a few days to get through the initial shock. PM me if you need to vent. It can help.
    Thoughts and prayers to you and your family.
    Lynda
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #10
    The Long Road:
    2010: Radiation.
    2011: Cancer back. Almost completely compromised airway. "Urgent" trachostomy followed by total laryngectomy (removal of vocal cords)
    Jan 2012: Still cancer remained: more radiation and chemo
    Oct 2012: Hot Spots in Lungs: very likely lung cancer.

    Through most of this I've been actually happy for some part of most days. In fact, I've been happier now, then when I was "healthy". Why? Because, I focus on only what is important. No more wasted energy on career advancement or impressing people. No arguments to win. I just live every day and try to find something to be thankful for, something to enjoy.

    Not to say things don't get me down. I am finding it a little harder to fall asleep. Can keep my mind occupied thru most of the day, but the worries creep in when I try to still my mind.

    Aside from the pep talk: you need to figure out whether your husband's tumor is in one location (more or less) or whether it is all over the place. There are different treatment options depending upon the situation. Rick.
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    prayers for you
    Elizabeth,

    I am sorry to hear your news, but there is always hope. I hope what ever choice you make helps to guide you to many more healthy years together.

    Faith and prayers,

    Matt
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #12
    2nd opinion-
    That's the route I would take, Elizabeth. Nearest major C center is where I'd go. Sorry to hear your news, but hope and Pray it'll all work out. Rads are the best option for elimination of the C, and one possible I heard of a couple years ago was very small doses of rads to a targeted C site twice a day. Place in LA put that on the table for someone who had it come back, and you might wanna mention it to your C team. Keep it in the Positive with your husband- the fight is still happening, and so long as it is-

    Believe

    kcass
  • katenorwood
    katenorwood Member Posts: 1,912
    #13
    Always hope
    Hey there !
    I'm assuming you're hubby had rads before. So with reoccurrance I'm not surprised that they couldn't use this again. But you mentioned chemo...between your ENT and Medical onc., they will come up with a plan of attack for him. If they aren't doing this absolutely get a second opinion ! Keep us updated....will be sending warm thoughts your direction ! Katie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #14
    Hi Elizabeth
    Whatever you do don’t give-up hope, there are a lot of survivors out there who were told “sorry there is nothing more we can do” and they are still alive today, I am one of them. You need time to think, and review all your options, get another opinion, look at other types of cancer treatment. Chemo & Radiation are the most used Cancer treatments but not the only types of Cancer treatments. Most of all pray for guidance and I will also be praying for you both.

    God Bless
    Tim Hondo
  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #15
    Hondo said:

    Hi Elizabeth
    Whatever you do don’t give-up hope, there are a lot of survivors out there who were told “sorry there is nothing more we can do” and they are still alive today, I am one of them. You need time to think, and review all your options, get another opinion, look at other types of cancer treatment. Chemo & Radiation are the most used Cancer treatments but not the only types of Cancer treatments. Most of all pray for guidance and I will also be praying for you both.

    God Bless
    Tim Hondo

    Hi Elizabeth
    My husband has had 2 rounds of radiation. First in starting in August 2010 with chemo for laryngeal cancer. Then in March 2011 he had a total laryngectomy. Everything was going well until April 2012 when he decided to have a puncture for a TEP. Doctor found a tumor at the cervical of the esophagus. Surgery not really an option due to location and previous surgery. He was told he needed radiation and chemo. We were told the first time that he could have no more radiation. This time we were at Emory Winship Cancer Center in Atlanta, GA and they said that he could have more radiation and they would pinpoint the radiation. He underwent another 35 radiation and 7 chemo treatments. We were told that the side effects to the second round of radiation could be serious. He had no problems other than the throat just about closing off. He had a PET/CT scan in September and some hot spots were showing up. Our surgeon decided to go down and look around and open his throat up. We got great news that everything was clear and he went all the way down into this stomach and he was able to open my husband's throat with little problem.

    So don't ever give up. Get a second opinion and be sure you are using doctors that specialize in the field.

    Best wishes
    Sharon
  • Elizabeth 1978
    Elizabeth 1978 Member Posts: 20
    #16
    Ladylacy said:

    Hi Elizabeth
    My husband has had 2 rounds of radiation. First in starting in August 2010 with chemo for laryngeal cancer. Then in March 2011 he had a total laryngectomy. Everything was going well until April 2012 when he decided to have a puncture for a TEP. Doctor found a tumor at the cervical of the esophagus. Surgery not really an option due to location and previous surgery. He was told he needed radiation and chemo. We were told the first time that he could have no more radiation. This time we were at Emory Winship Cancer Center in Atlanta, GA and they said that he could have more radiation and they would pinpoint the radiation. He underwent another 35 radiation and 7 chemo treatments. We were told that the side effects to the second round of radiation could be serious. He had no problems other than the throat just about closing off. He had a PET/CT scan in September and some hot spots were showing up. Our surgeon decided to go down and look around and open his throat up. We got great news that everything was clear and he went all the way down into this stomach and he was able to open my husband's throat with little problem.

    So don't ever give up. Get a second opinion and be sure you are using doctors that specialize in the field.

    Best wishes
    Sharon

    Looking for hope
    Our appointment got cancel, it's schedule for Monday next week, apparently all the team will get together and discuss, the radiology dr just told us that the scan show no good results. He did not say exactly where or how it has spread all he said was that he could not offer more radiation. The chemo dr said they could offer more chemo but we had to discuss with ENT. To answer all your questions , it's a public hospital, I live in Perth, Australia and I don't know where a special cancer centre is. He is having his tube peg change today.

    The day we saw radiology which was on Tuesday their computer was down and could not see the report. So he was just going on what he saw on the scan, apart from that. I come here to see your posting and in my quiet and lonely moments I do break down and cry and wonder why this is happening. I do wish I could take him somewhere else where they can tell me not all hope is lost, I am trying to understand,the type of cancer he has, I don't even know my self the name of it but it's one that I've seen on the board here, I would do anything even give my life for his, I just want him happy and be him again.
  • hwt
    hwt Member Posts: 2,328 Member
    #17
    Elizabeth 1978 said:

    Looking for hope
    Our appointment got cancel, it's schedule for Monday next week, apparently all the team will get together and discuss, the radiology dr just told us that the scan show no good results. He did not say exactly where or how it has spread all he said was that he could not offer more radiation. The chemo dr said they could offer more chemo but we had to discuss with ENT. To answer all your questions , it's a public hospital, I live in Perth, Australia and I don't know where a special cancer centre is. He is having his tube peg change today.

    The day we saw radiology which was on Tuesday their computer was down and could not see the report. So he was just going on what he saw on the scan, apart from that. I come here to see your posting and in my quiet and lonely moments I do break down and cry and wonder why this is happening. I do wish I could take him somewhere else where they can tell me not all hope is lost, I am trying to understand,the type of cancer he has, I don't even know my self the name of it but it's one that I've seen on the board here, I would do anything even give my life for his, I just want him happy and be him again.

    Elizabeth
    Please don't ever be intimidated or uncomfortable about asking the doctors questions. Tell them when you don't understand. Ask them to write down what type of cancer he has, where it is and what the plan is. It's not fair that you have to wait a full week for answers because their computer was down. Personally, I would call. It's always a good idea to take an "extra set of ears" to your appts. My sister always went with my husband and I and she took notes. We had questions written down when we went so we would not forget anything. You can fight this but you need to know what you are fighting.
  • Elizabeth 1978
    Elizabeth 1978 Member Posts: 20
    #18
    hwt said:

    Elizabeth
    Please don't ever be intimidated or uncomfortable about asking the doctors questions. Tell them when you don't understand. Ask them to write down what type of cancer he has, where it is and what the plan is. It's not fair that you have to wait a full week for answers because their computer was down. Personally, I would call. It's always a good idea to take an "extra set of ears" to your appts. My sister always went with my husband and I and she took notes. We had questions written down when we went so we would not forget anything. You can fight this but you need to know what you are fighting.

    Looking for hope
    Type of cancer is squamous cell carcinoma in the mouth and it's grade 2 cancer.
  • Elizabeth 1978
    Elizabeth 1978 Member Posts: 20
    #19
    hwt said:

    Elizabeth
    Please don't ever be intimidated or uncomfortable about asking the doctors questions. Tell them when you don't understand. Ask them to write down what type of cancer he has, where it is and what the plan is. It's not fair that you have to wait a full week for answers because their computer was down. Personally, I would call. It's always a good idea to take an "extra set of ears" to your appts. My sister always went with my husband and I and she took notes. We had questions written down when we went so we would not forget anything. You can fight this but you need to know what you are fighting.

    Looking for hope
    Type of cancer is squamous cell carcinoma in the mouth and it's grade 2 cancer.
  • Elizabeth 1978
    Elizabeth 1978 Member Posts: 20
    #20
    hwt said:

    Elizabeth
    Please don't ever be intimidated or uncomfortable about asking the doctors questions. Tell them when you don't understand. Ask them to write down what type of cancer he has, where it is and what the plan is. It's not fair that you have to wait a full week for answers because their computer was down. Personally, I would call. It's always a good idea to take an "extra set of ears" to your appts. My sister always went with my husband and I and she took notes. We had questions written down when we went so we would not forget anything. You can fight this but you need to know what you are fighting.

    Looking for hope
    Type of cancer is squamous cell carcinoma in the mouth and it's grade 2 cancer.
  • Pam M
    Pam M Member Posts: 2,196
    #21
    Elizabeth 1978 said:

    Looking for hope
    Type of cancer is squamous cell carcinoma in the mouth and it's grade 2 cancer.

    What a Blow
    I'm wondering if "grade 2" cancer is like our "stage 2". Did the docs not say anything about surgery? I've read of many people who have surgery for oral cancers, and for recurrances.

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