oral mets lung

We were hoping this mess was over until a ct showed cancer in both of my husbands lungs. We are praying for a miracle. Has anyone else had any experience with anything like this? He is 32 so the Drs have no answers because of how agressive this cancer has been. This is the 4th time in less than a year he has had it.

Comments

  • robinleigh
    robinleigh Member Posts: 297
    More info
    4th time of recurrences? Have you been posting here and have more details? I would love to help with what I have because my husband is battling a metastasis. He is doing well in a clinical trial but I don't know if we are in the "same boat".
  • ahamric
    ahamric Member Posts: 92
    mets
    Last Jan he found a lump in his tongue and we later found out it was scc. His Dr removed it and 36 lymph nodes and sent us on our way. 6 weeks later there was another lump..scc. Dr demoved it and did a reconstruction from his arm. The reconstruction failed the next day and had to be removed and a skin graft was taken from his leg. He did 33 rounds of radiation. He finished on Aug 18th. Fast foreward to this Jan another lump..scc. Dr was going to remove more lymph nodes but decided to do a full body ct scan at that time they found spots on both lungs...biopsy..scc. That was last Thurs and he started chemo today. : /
  • robinleigh
    robinleigh Member Posts: 297
    ahamric said:

    mets
    Last Jan he found a lump in his tongue and we later found out it was scc. His Dr removed it and 36 lymph nodes and sent us on our way. 6 weeks later there was another lump..scc. Dr demoved it and did a reconstruction from his arm. The reconstruction failed the next day and had to be removed and a skin graft was taken from his leg. He did 33 rounds of radiation. He finished on Aug 18th. Fast foreward to this Jan another lump..scc. Dr was going to remove more lymph nodes but decided to do a full body ct scan at that time they found spots on both lungs...biopsy..scc. That was last Thurs and he started chemo today. : /

    Gotcha
    Didn't know his story and I sympathize. I imagine chemo is in order before anything. My husband had chemo and radiation concurrently upon his initial diagnosis. His distant metastasis was later and now being treated with chemotherapy.

    I imagine you will finish his regimens of chemo, have a scan to assess his response, and continue the game plan from there? Takes lots of hope and patience...wishing you both a very positive response to treatment!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Thoughts & Prayers
    Sorry for that ordeal you guys are going through....

    Hopefully the chemo will help neutralize the persistant mets you guys have been going though...

    My Best,
    John
  • Ed_PortOrange
    Ed_PortOrange Member Posts: 110
    Also have Mets to lung
    Ahamric,

    Although my cancer (scc) took 21 months to return I'm in a similar position. PET/CT performed in 09/11 showed a possible cancer in my right lung lower node. In 12/11 I was operated on for a small intestine blockage which was caused by an SCC tumor. On 12/24/11 had a follow-up PET/CT which showed no sign of cancer in right lung but now the left side lung lite up along with a spot in my liver. (How reliable are these scans?) I've been on a chemo regiment of Carboplatin and Erbitux for the last 5 weeks and expect to be reevaluated in about a month. Many side effects at this time and suspicious lower back and abdominal pains. Hoping his chemo plan will do the trick, which drugs are they using? How often is he being treated?

    If I can be of any help answering questions, please don't hesitate to ask.

    Blessings,
    Ed
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    not sure
    A spot was just found on my lung 5mm but the doctors did a ct and said we will just keeping a check on it every 6 months. I really worry about b/c we know how fast it can grow if it is cancer.
    I will be praying for you and your family. And, yes, like you, I'll be praying for a miracle for you.
    Take care.
    Debbie
  • ALECIA1960
    ALECIA1960 Member Posts: 3

    not sure
    A spot was just found on my lung 5mm but the doctors did a ct and said we will just keeping a check on it every 6 months. I really worry about b/c we know how fast it can grow if it is cancer.
    I will be praying for you and your family. And, yes, like you, I'll be praying for a miracle for you.
    Take care.
    Debbie

    hi im new here. read your story
    i am new here but found your story very close to mine as of now they found a spot 4 mm in oct 11, i had to wait 4 months being last week for another cat scan. it showed it has not grown so now i have to wait 6 months to have another cat scan. a little history 5 years ago i had lung cancer and had my left lower lobe removed.scans have been fine till my 5th year scan. i dont understand how come there not doing a pet scan to see if its any place else my lungs my back and hip is in pain all the time for one thing. but for this pulmanoligist to just have me sit back and wait is not making me happy (by the way 5 years ago a diffrent pulmanoligist said nope its not cancer bla bla bla so i got a 2nd and with in 2 weeks i was in the hospital)i have never had a cancer doctor. i am scared to death. have been for 5 years but thought i was going to made a little better as i made the 5 year mark....not can anyone tell me what i should do.....by the way my father and all of his brothers and a sister had cancer most lung and a 1/2 brother. i feel doomed


    SORRY FOR MISS SPELLED WORDS
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member

    hi im new here. read your story
    i am new here but found your story very close to mine as of now they found a spot 4 mm in oct 11, i had to wait 4 months being last week for another cat scan. it showed it has not grown so now i have to wait 6 months to have another cat scan. a little history 5 years ago i had lung cancer and had my left lower lobe removed.scans have been fine till my 5th year scan. i dont understand how come there not doing a pet scan to see if its any place else my lungs my back and hip is in pain all the time for one thing. but for this pulmanoligist to just have me sit back and wait is not making me happy (by the way 5 years ago a diffrent pulmanoligist said nope its not cancer bla bla bla so i got a 2nd and with in 2 weeks i was in the hospital)i have never had a cancer doctor. i am scared to death. have been for 5 years but thought i was going to made a little better as i made the 5 year mark....not can anyone tell me what i should do.....by the way my father and all of his brothers and a sister had cancer most lung and a 1/2 brother. i feel doomed


    SORRY FOR MISS SPELLED WORDS

    Hi Alecia
    I've read your post a couple of times, but can't tell for sure if you're a previous lung cancer patient, or if you've actually had throat cancer in the past. Looks like lung was your primary, and quite a while ago????

    Lots of us have talked about having findings of these smaller lung lesions on CT. I have a couple myself. They are unrelated, at least in me, to my cancers, which have all been throat cancers. But as you know, a spot on a lung could actually be a lung cancer, so these are never to be taken lightly.

    In my case, a couple of spots showed on the lungs a year ago. They were very small, and when followed over the course of 3 CT scans, they never changed. They were completely benign lumps, not cancer of any sort. Another poster here was talking about having something similar, but it grew slightly on a follow up scan, and a fine needle bx showed cancer, so they are having a lobectomy for treatment.

    It sounds like you are having some other symptoms thatyour doctors need to address. The hip pain is one, for instance. I'd make sure they understood that this was a problem you needed sorted out and treated, then work with them on how they work it up.

    To address the PET scan issue, the PEt scan is actually not the miracle work up we all wish it were. It has false positives as well as false negatives, and may just not be the test of choice for you right now. Have you ask your doctors about this?

    Welcome to the board. There's time for you to sort all this out. Just got to get organized and figure out how to present your case.

    best to you

    Pat
  • ALECIA1960
    ALECIA1960 Member Posts: 3

    Hi Alecia
    I've read your post a couple of times, but can't tell for sure if you're a previous lung cancer patient, or if you've actually had throat cancer in the past. Looks like lung was your primary, and quite a while ago????

    Lots of us have talked about having findings of these smaller lung lesions on CT. I have a couple myself. They are unrelated, at least in me, to my cancers, which have all been throat cancers. But as you know, a spot on a lung could actually be a lung cancer, so these are never to be taken lightly.

    In my case, a couple of spots showed on the lungs a year ago. They were very small, and when followed over the course of 3 CT scans, they never changed. They were completely benign lumps, not cancer of any sort. Another poster here was talking about having something similar, but it grew slightly on a follow up scan, and a fine needle bx showed cancer, so they are having a lobectomy for treatment.

    It sounds like you are having some other symptoms thatyour doctors need to address. The hip pain is one, for instance. I'd make sure they understood that this was a problem you needed sorted out and treated, then work with them on how they work it up.

    To address the PET scan issue, the PEt scan is actually not the miracle work up we all wish it were. It has false positives as well as false negatives, and may just not be the test of choice for you right now. Have you ask your doctors about this?

    Welcome to the board. There's time for you to sort all this out. Just got to get organized and figure out how to present your case.

    best to you

    Pat

    thank you
    thank you Pat.there were other things on the scan but they are pin pointing to this one. i do not know why. yes lung cancer 2005. took the lobe out no other treatment.i do know this was not on my scan last year. its something new they said. i thank you for answering, its hard no one seems to understand i had a Aunt and a Sister in law with cancer so we always talked i lost both in the last 3 months sat with both of them till the very end. and a best friend a couple years ago and my mother a year before that but those to were not cancer. i am just freaked out about everything i guess. i dont know if its my depression or something else but i dont have any engery to do anything any more and i am NOT losing weight. guess i need to go see my gp.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member

    thank you
    thank you Pat.there were other things on the scan but they are pin pointing to this one. i do not know why. yes lung cancer 2005. took the lobe out no other treatment.i do know this was not on my scan last year. its something new they said. i thank you for answering, its hard no one seems to understand i had a Aunt and a Sister in law with cancer so we always talked i lost both in the last 3 months sat with both of them till the very end. and a best friend a couple years ago and my mother a year before that but those to were not cancer. i am just freaked out about everything i guess. i dont know if its my depression or something else but i dont have any engery to do anything any more and i am NOT losing weight. guess i need to go see my gp.

    Don't sell yourself short
    You deserve careful consideration and management of all of your problems. I certainly understand the emotional environment you are working out of. OTOH, the lung finding is important, just convince yourself the right things are truly being done for you. The other symptoms need evaluated. Heck, your GP is probably as good a place to start as any. That's probably where I'd start (I finish treatment here this week, and I've already got an appointment with my GP for some problems that are related, adn some that arent' related, to my cancer).

    No energy, depression? Imagine that:)

    Best to you.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    hi im new here. read your story
    i am new here but found your story very close to mine as of now they found a spot 4 mm in oct 11, i had to wait 4 months being last week for another cat scan. it showed it has not grown so now i have to wait 6 months to have another cat scan. a little history 5 years ago i had lung cancer and had my left lower lobe removed.scans have been fine till my 5th year scan. i dont understand how come there not doing a pet scan to see if its any place else my lungs my back and hip is in pain all the time for one thing. but for this pulmanoligist to just have me sit back and wait is not making me happy (by the way 5 years ago a diffrent pulmanoligist said nope its not cancer bla bla bla so i got a 2nd and with in 2 weeks i was in the hospital)i have never had a cancer doctor. i am scared to death. have been for 5 years but thought i was going to made a little better as i made the 5 year mark....not can anyone tell me what i should do.....by the way my father and all of his brothers and a sister had cancer most lung and a 1/2 brother. i feel doomed


    SORRY FOR MISS SPELLED WORDS

    PET & Another Opinion...
    I know that Pat has more of a medical background than myself, but for me the PET is pretty darn good in the right hands.

    Again, it is a tool, the experience come with the MD's reading it along with the handson MD, in my case that is my ENT.

    With all of the other things going on, if you don't have confidense in your MD's decisions maybe you should think of getting another opinion.

    At least that will give you some confidense in your existing MD, or empower you to make a more informed decision.

    Thoughts & Prayers,
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Skiffin16 said:

    PET & Another Opinion...
    I know that Pat has more of a medical background than myself, but for me the PET is pretty darn good in the right hands.

    Again, it is a tool, the experience come with the MD's reading it along with the handson MD, in my case that is my ENT.

    With all of the other things going on, if you don't have confidense in your MD's decisions maybe you should think of getting another opinion.

    At least that will give you some confidense in your existing MD, or empower you to make a more informed decision.

    Thoughts & Prayers,
    John

    Here Kitty, kitty....
    There are some significant limitations to the discernment of the PET scan. At dimensions of less than 1cm, the PET scan will fail to diagnose over a third of cancers. The poster's lung lesion is only 4mm, which generates a probability far below the quoted percentage.

    Also, fine needle aspiration at this size is like hitting the bullseye on a dartboard. Not easy to do, requiring luck more than skill on the part of the physician. It's a situation begging for a better answer than expectant observation, but it is the reason why this is mostly done.

    Pat
  • ALECIA1960
    ALECIA1960 Member Posts: 3
    Skiffin16 said:

    PET & Another Opinion...
    I know that Pat has more of a medical background than myself, but for me the PET is pretty darn good in the right hands.

    Again, it is a tool, the experience come with the MD's reading it along with the handson MD, in my case that is my ENT.

    With all of the other things going on, if you don't have confidense in your MD's decisions maybe you should think of getting another opinion.

    At least that will give you some confidense in your existing MD, or empower you to make a more informed decision.

    Thoughts & Prayers,
    John

    thanks
    thank you John. and Pat just knowing your not alone is a good feeling
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Here Kitty, kitty....
    There are some significant limitations to the discernment of the PET scan. At dimensions of less than 1cm, the PET scan will fail to diagnose over a third of cancers. The poster's lung lesion is only 4mm, which generates a probability far below the quoted percentage.

    Also, fine needle aspiration at this size is like hitting the bullseye on a dartboard. Not easy to do, requiring luck more than skill on the part of the physician. It's a situation begging for a better answer than expectant observation, but it is the reason why this is mostly done.

    Pat

    Darts....
    I'm pretty good at darts also, multi-talented...that's why I'm good at targeting those fish several feet under the water in the cheese (washed out limestone holes) as they call some of the bottom here in Florida, LOL....

    JG
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    thanks
    thank you John. and Pat just knowing your not alone is a good feeling

    One is the loneliest number....
    You are definitely not alone here....

    I've found that no matter what time you post, there's is usually someone willing to share comments with you.

    Best,
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Skiffin16 said:

    Darts....
    I'm pretty good at darts also, multi-talented...that's why I'm good at targeting those fish several feet under the water in the cheese (washed out limestone holes) as they call some of the bottom here in Florida, LOL....

    JG

    Darts, sight-fishing
    require similar skill sets. I expect you are darn good at both. I'm more of a random luck sort of a guy.
  • rcav8er
    rcav8er Member Posts: 2

    Also have Mets to lung
    Ahamric,

    Although my cancer (scc) took 21 months to return I'm in a similar position. PET/CT performed in 09/11 showed a possible cancer in my right lung lower node. In 12/11 I was operated on for a small intestine blockage which was caused by an SCC tumor. On 12/24/11 had a follow-up PET/CT which showed no sign of cancer in right lung but now the left side lung lite up along with a spot in my liver. (How reliable are these scans?) I've been on a chemo regiment of Carboplatin and Erbitux for the last 5 weeks and expect to be reevaluated in about a month. Many side effects at this time and suspicious lower back and abdominal pains. Hoping his chemo plan will do the trick, which drugs are they using? How often is he being treated?

    If I can be of any help answering questions, please don't hesitate to ask.

    Blessings,
    Ed

    Same Boat - Third Time with great success.
    I to started out with SCC at the base of my tongue.
    This transitioned to Lung after about 2 years.
    We have treated with Carboplatin, Taxol & Erbitux with very good results.
    We continued Ebitux after scans were clear for about 6 months with no
    further issues. Decision was made to stop Erbitux and basically see what
    happened. Well after about 12 months the cancer returned to the left lung.
    We have just finished the Carbo. & Taxol treatments and the scans are again
    clear. Looks like we will be continuing weekly Erbitux treatments for the
    forseeable future. Looks like the Erbitux is keeping things in check.
    Hopefully for the long term.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    rcav8er said:

    Same Boat - Third Time with great success.
    I to started out with SCC at the base of my tongue.
    This transitioned to Lung after about 2 years.
    We have treated with Carboplatin, Taxol & Erbitux with very good results.
    We continued Ebitux after scans were clear for about 6 months with no
    further issues. Decision was made to stop Erbitux and basically see what
    happened. Well after about 12 months the cancer returned to the left lung.
    We have just finished the Carbo. & Taxol treatments and the scans are again
    clear. Looks like we will be continuing weekly Erbitux treatments for the
    forseeable future. Looks like the Erbitux is keeping things in check.
    Hopefully for the long term.

    Wow
    Welcome to the group. Yours is a very significant story of success! Thank you for posting it, I hope you will keep coming back.

    Besgt to you.

    Pat