Lung mets? Soooo afraid

KareGiver
KareGiver Member Posts: 301 Member
in Head and Neck Cancer #1
Hello everyone...this time last year my husband was in treatment for Stage 2 tonsil cancer (HPV+). He really has been doing well, keeping up with appts., etc. Went to regular doc for a couple of nagging symptoms last Monday (no big deal, we thought), and BOOM, we've gone from a chest x-ray and CT scan last week to the oncologist tomorrow. We are both very scared and in disbelief. The unknown is so difficult, but just wanted to reach out this evening to all of you who most likely know how we feel...
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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Soooo...
    Have you had a biopsy or just in fear that something showing up on the CT might me mets...?

    Hoping it's just the latter and your mind is running wild in fear... (well not hoping the fear part), but that nothing definitive has been Dx as of yet.

    If that's the case just realize there are a lot that have various things show up that turn out not to be a recurrence or new camcer.

    Thoughts an Prayers,
    John
  • KareGiver
    KareGiver Member Posts: 301 Member
    #3
    Skiffin16 said:

    Soooo...
    Have you had a biopsy or just in fear that something showing up on the CT might me mets...?

    Hoping it's just the latter and your mind is running wild in fear... (well not hoping the fear part), but that nothing definitive has been Dx as of yet.

    If that's the case just realize there are a lot that have various things show up that turn out not to be a recurrence or new camcer.

    Thoughts an Prayers,
    John

    Oh John, thank you for
    Oh John, thank you for responding. My mind IS running wild in fear at the moment. A biopsy has not been done but expect one to be ordered. I am rereading your words and doing my best to take them to heart.
    Much appreciation
    Lynda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    KareGiver said:

    Oh John, thank you for
    Oh John, thank you for responding. My mind IS running wild in fear at the moment. A biopsy has not been done but expect one to be ordered. I am rereading your words and doing my best to take them to heart.
    Much appreciation
    Lynda

    Lynda...
    I know it's much easier said than done.

    My first year post treatment I was always thinking the worse. It's hard not to go through what we have and not.

    Prior to Dx I would have never thought cancer. No history, never been a tobacco user, etc...., then wham, right in your face.

    So I would hold my breath each time between scans and results. Anything that was going on prior would eventually go away. If it got bad enough, then I'd go to the MD.

    First year an even still occasionally after three years. If I have something going on in the head, neck, chest for more than a few days...bad thoughts and a little panic try to creep in.

    Just realize that the majority on here...actually a rather high majority have been treated successfully with no recurrence...odds are in our favor.

    Best,
    John
  • Ingrid K
    Ingrid K Member Posts: 813
    #5
    Skiffin16 said:

    Lynda...
    I know it's much easier said than done.

    My first year post treatment I was always thinking the worse. It's hard not to go through what we have and not.

    Prior to Dx I would have never thought cancer. No history, never been a tobacco user, etc...., then wham, right in your face.

    So I would hold my breath each time between scans and results. Anything that was going on prior would eventually go away. If it got bad enough, then I'd go to the MD.

    First year an even still occasionally after three years. If I have something going on in the head, neck, chest for more than a few days...bad thoughts and a little panic try to creep in.

    Just realize that the majority on here...actually a rather high majority have been treated successfully with no recurrence...odds are in our favor.

    Best,
    John

    Lynda, John is correct...
    Lynda, John is correct... the odds are in your favor that it is just hot spots showing up on scans. nothing is for sure until there is a biopsy... and yes, it's easier said than to actually do. Hope you and hubby get good results. Will keep you in my prayers.
  • LeoS2323
    LeoS2323 Member Posts: 160
    #6
    Stats on your side
    Posted last week a stat which may reassure a little.

    My oncologist is a professor and heavily involved in research, and when I was worrying he said that in a recent study of HNC covering 1800 patients the rate of spread away from H & N area was only 4%.

    Also generally to spread it will usually have to have developed significantly in the lymph nodes in the neck area first.

    The chances are it is not what you fear - of course that won't stop you worrying, and there are no guarantees but try to believe the chances are good it will be something else. Good luck and let us know how you get on.,,

    All the best

    Leo
  • Laralyn
    Laralyn Member Posts: 532
    #7
    Hi, KareGiver!
    I'm a new gal
    Hi, KareGiver!

    I'm a new gal on the boards but I did a ton of research when I was diagnosed. I mean a TON-- three solid days, 12 hours per. I continued researching after (and still continue). Like the others have said, the odds are in your husband's favor. And I would rather have an overly cautious oncologist than the opposite!

    That being said, there are AWESOME new treatments for lung cancer so even if he needs a biopsy, don't panic or lose hope. They can do special radiology treatments that track moving organs (like lungs when you breathe) or brachiatherapy (radioactive implants that treat the tumor with no effect on other organs). I'm on my phone right now but if you'd like some links, I'd be glad to post them tomorrow. :-)
  • Pam M
    Pam M Member Posts: 2,196
    #8
    Very Scary
    It is reassuring to hear that chances are low. And I have heard a few folks here who have something "interesting" show up on a scan or MRI that turned out to be nothing, or scar tissue from old illness. Hope all goes well.
  • ratface
    ratface Member Posts: 1,337 Member
    #9
    Pam M said:

    Very Scary
    It is reassuring to hear that chances are low. And I have heard a few folks here who have something "interesting" show up on a scan or MRI that turned out to be nothing, or scar tissue from old illness. Hope all goes well.

    I've got four lung spots
    and a thyroid spot, and probably spots on my, "you know what". You don't elaborate as to number, size, and location but mine are scattered, in the 4mm range, and always show up on my CT scans. As far as everyone can tell they were there prior to my cancer, caused by some other anomaly, "NOT CANCER". I have lived the terror you are in, but as everyone has stated, there are endless possibilities and there is nothing definitive yet. Do you live in the Midwest? if so goggle Histoplasmosis, and begin to discover all the other reasons for possible lung spots. Personally, I think it's the leopard in me. Hoping he is part leopard also.
  • KareGiver
    KareGiver Member Posts: 301 Member
    #10
    ratface said:

    I've got four lung spots
    and a thyroid spot, and probably spots on my, "you know what". You don't elaborate as to number, size, and location but mine are scattered, in the 4mm range, and always show up on my CT scans. As far as everyone can tell they were there prior to my cancer, caused by some other anomaly, "NOT CANCER". I have lived the terror you are in, but as everyone has stated, there are endless possibilities and there is nothing definitive yet. Do you live in the Midwest? if so goggle Histoplasmosis, and begin to discover all the other reasons for possible lung spots. Personally, I think it's the leopard in me. Hoping he is part leopard also.

    Thanks
    For all your comments and prayers. They have "calmed me down" Hopefully we will be more reassured after the appointment this evening. Truly, the people on this board are the best! And Ratface, we do live in the Midwest, so I will google Histoplasmosis! ( I've been googling a lot lately...)
  • ditto1
    ditto1 Member Posts: 660
    #11
    UNKNOWN
    The one theme I have picked up since finding this site, me included, is the UNKNOWN until it turns in to the KNOWN. I will be having a CT(chest) and PET scan this Friday so all the results from my multiple test should be available for the TEAM of Docs I will see next Monday.. So just when I say ok I have thoart cancer, lets go, they want to look elsewhere. Emotions say don't just leave it alone, and the other part that says find out once and for all so we can either relax or add some Armor for the fight. Praying for YA.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #12
    I CAN RELATE
    Lynda, last June I had a routine Neck and Chest CT w/ Contrast and a spot was discovered in my Left Upper Lobe of my Lung. They said it resembled scar tissue and or some type of unknown inflamation and it had a "ground glass" appearance which is not indicative of Cancer. I had a follow up CT in December and the spot was completely gone.

    I just had another Neck and Chest CT with Contrast and another simillar spot showed up in my Right Lobe and my Thoracic Surgeon is not at all worried about it as it resembles the one I had.

    In short, it can be allot of things other than Cancer.

    Hope this helps.

    Best!!

    Mike
  • RogerRN43
    RogerRN43 Member Posts: 185
    #13
    KareGiver
    Stage 2 at diagnosis and I'm assuming your husband had scans the past year, it would be unusual for him to develop a second primary in the lungs if this whole time he had no lymphatic involvement. The exemption may be if he was a heavy smoker. It is just not characteristic of HPV oral cancer.

    Unlike other forums, I don't know how to look back at all your previous posts to get more information. I did see an older post where you mention blood clots in the lungs. If you were referring to your husband, perhaps these spots seen on the CXR and CT are related to the healing of those spots?

    Take a deep breath.
    Until you get a definitive diagnosis via biopsy, deal with it then.

    Best hope for good news
  • KareGiver
    KareGiver Member Posts: 301 Member
    #14
    RogerRN43 said:

    KareGiver
    Stage 2 at diagnosis and I'm assuming your husband had scans the past year, it would be unusual for him to develop a second primary in the lungs if this whole time he had no lymphatic involvement. The exemption may be if he was a heavy smoker. It is just not characteristic of HPV oral cancer.

    Unlike other forums, I don't know how to look back at all your previous posts to get more information. I did see an older post where you mention blood clots in the lungs. If you were referring to your husband, perhaps these spots seen on the CXR and CT are related to the healing of those spots?

    Take a deep breath.
    Until you get a definitive diagnosis via biopsy, deal with it then.

    Best hope for good news

    Roger, my husband was not a
    Roger, my husband was not a smoker (except for those occasional ones 30 years ago!) and yes, he did have saddle PEs...very scary. That is what we "hope" these spots are from but as I keep saying, all of these posts are calming us down. We are off to the doctor in a couple of hours. That you for the positive thoughts!
  • KareGiver
    KareGiver Member Posts: 301 Member
    #15
    KareGiver said:

    Roger, my husband was not a
    Roger, my husband was not a smoker (except for those occasional ones 30 years ago!) and yes, he did have saddle PEs...very scary. That is what we "hope" these spots are from but as I keep saying, all of these posts are calming us down. We are off to the doctor in a couple of hours. That you for the positive thoughts!

    An update, with thanks
    My friends, it is with a heavy heart that I inform you that my husband is in the "4 percent" whose H&N cancer has decided to move on. He will be seeing another doctor, get a pet scan and a biopsy with these tests moving quickly. He is sixty years old and feels good. We are in shock. Although we have never met physically, your thoughts and prayers would be greatly appreciated if you don't mind me asking. Thank you, thank you, for being on this board.
    Lynda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    KareGiver said:

    An update, with thanks
    My friends, it is with a heavy heart that I inform you that my husband is in the "4 percent" whose H&N cancer has decided to move on. He will be seeing another doctor, get a pet scan and a biopsy with these tests moving quickly. He is sixty years old and feels good. We are in shock. Although we have never met physically, your thoughts and prayers would be greatly appreciated if you don't mind me asking. Thank you, thank you, for being on this board.
    Lynda

    WOW.....
    So very sorry to hear that news Lynda...

    You guys have been through this battle before and are warriors. Stay positive and fight, fight, fight....

    You and the hubby definitely have my thoughts and prayers,
    John
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #17
    Skiffin16 said:

    WOW.....
    So very sorry to hear that news Lynda...

    You guys have been through this battle before and are warriors. Stay positive and fight, fight, fight....

    You and the hubby definitely have my thoughts and prayers,
    John

    So Sorry for your news!!
    Many Hugs and Prayers for Roger and you!!!


    The words sorry can't explain the sadness I feel every time I hear this news. It effects us all!! I hate cancer!!!!!!!!!!!!!! :(
    Charles
  • salemsue
    salemsue Member Posts: 5
    #18
    mets
    about a year ago we got the same news. My husband had stage 4 head/neck cancer and did chemo and radiation and for 7 months after treatment ended he was doing great. Then an chest x-ray showed mets and it all started again. He did 2 rounds of chemo and then went to MD Anderson in Houston for clinical trial. August of 2011 he was wore out from fighting and stopped all chemo/clinical trials and is taking Paw Paw and drinking Willard Water 3 times a day and is doing well. Last few CT scans have showed no change. His Dr told him nothing can cure his cancer, all he could offer was different chemo's and clinical trials and hope something helped. We often wish he never had that chest x-ray. He never felt bad and for the past year the only time he was sick was when he was getting the chemo.
    Betty Sue
  • salemsue
    salemsue Member Posts: 5
    #19
    mets
    about a year ago we got the same news. My husband had stage 4 head/neck cancer and did chemo and radiation and for 7 months after treatment ended he was doing great. Then an chest x-ray showed mets and it all started again. He did 2 rounds of chemo and then went to MD Anderson in Houston for clinical trial. August of 2011 he was wore out from fighting and stopped all chemo/clinical trials and is taking Paw Paw and drinking Willard Water 3 times a day and is doing well. Last few CT scans have showed no change. His Dr told him nothing can cure his cancer, all he could offer was different chemo's and clinical trials and hope something helped. We often wish he never had that chest x-ray. He never felt bad and for the past year the only time he was sick was when he was getting the chemo.
    Betty Sue
  • KareGiver
    KareGiver Member Posts: 301 Member
    #20
    salemsue said:

    mets
    about a year ago we got the same news. My husband had stage 4 head/neck cancer and did chemo and radiation and for 7 months after treatment ended he was doing great. Then an chest x-ray showed mets and it all started again. He did 2 rounds of chemo and then went to MD Anderson in Houston for clinical trial. August of 2011 he was wore out from fighting and stopped all chemo/clinical trials and is taking Paw Paw and drinking Willard Water 3 times a day and is doing well. Last few CT scans have showed no change. His Dr told him nothing can cure his cancer, all he could offer was different chemo's and clinical trials and hope something helped. We often wish he never had that chest x-ray. He never felt bad and for the past year the only time he was sick was when he was getting the chemo.
    Betty Sue

    Wow
    Betty Sue, it is just amazing what this beast can - and cannot - do. I tend to go to the "dark side" and need to move from that. Of course, we know this is serious. I appreciate your response and encouragement and wish both of you well. Thank you.
  • Ingrid K
    Ingrid K Member Posts: 813
    #21
    KareGiver said:

    Wow
    Betty Sue, it is just amazing what this beast can - and cannot - do. I tend to go to the "dark side" and need to move from that. Of course, we know this is serious. I appreciate your response and encouragement and wish both of you well. Thank you.

    it sucks, but don't give up
    Karegiver, sorry for the news you got. But you are both fighters and like others above have said... keep fighting. Don't give up, everyone is different and you can't give up. We all know cancer sucks, but you've fought the battle before, you can fight some more.
    All prayers coming your way.

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