Recurrence

robinleigh
robinleigh Member Posts: 297
in Head and Neck Cancer #1
Husband just had first pet scan and two spots lit up. One In hip. One in femur. We are baffled because I have never seen anyone post in head and neck forum about metastasis to bone. His biopsy is Friday. Anybody have experience like this. Needless to say we are scared...
Robinleigh
«1

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Have they actually told you at this point that the hot spots are cancer.....

    Not all hot spots are cancer, just displays of high cellular activity. True these are the same look on the PET as cancer does, but the biopsy is the more definitive.

    At this point try to stay positive...

    I'm not an expert, but also if it is indeed cancer. I'd presume this to be a new instance more so than a recurrence. But I could be wrong on that.

    Out of curiosity, why were they doing a PET to that area...all of my PET scans have ended at the groin area Unless you are talking the very top, in that case seems they might do so investigating further down on the legs.

    Thoughts & Prayers,
    John
  • arndog64
    arndog64 Member Posts: 537
    #3
    What type of head and neck
    What type of head and neck cancer did he have?
  • robinleigh
    robinleigh Member Posts: 297
    #4
    Skiffin16 said:

    Have they actually told you at this point that the hot spots are cancer.....

    Not all hot spots are cancer, just displays of high cellular activity. True these are the same look on the PET as cancer does, but the biopsy is the more definitive.

    At this point try to stay positive...

    I'm not an expert, but also if it is indeed cancer. I'd presume this to be a new instance more so than a recurrence. But I could be wrong on that.

    Out of curiosity, why were they doing a PET to that area...all of my PET scans have ended at the groin area Unless you are talking the very top, in that case seems they might do so investigating further down on the legs.

    Thoughts & Prayers,
    John

    Thanks John. All three docs
    Thanks John. All three docs seem to think the hot spots are most likely metastasis to the bone. We will get biopsy report on Monday and have an appt. At a hospital closer to home because they say chemo will be the protocol. I don't know why they did pet of whole body but they did. Trying to find courage to start battle again. Not easy with news being so recent.
  • robinleigh
    robinleigh Member Posts: 297
    #5
    Skiffin16 said:

    Have they actually told you at this point that the hot spots are cancer.....

    Not all hot spots are cancer, just displays of high cellular activity. True these are the same look on the PET as cancer does, but the biopsy is the more definitive.

    At this point try to stay positive...

    I'm not an expert, but also if it is indeed cancer. I'd presume this to be a new instance more so than a recurrence. But I could be wrong on that.

    Out of curiosity, why were they doing a PET to that area...all of my PET scans have ended at the groin area Unless you are talking the very top, in that case seems they might do so investigating further down on the legs.

    Thoughts & Prayers,
    John

    Thanks John. All three docs
    Thanks John. All three docs seem to think the hot spots are most likely metastasis to the bone. We will get biopsy report on Monday and have an appt. At a hospital closer to home because they say chemo will be the protocol. I don't know why they did pet of whole body but they did. Trying to find courage to start battle again. Not easy with news being so recent.
  • robinleigh
    robinleigh Member Posts: 297
    #6
    Skiffin16 said:

    Have they actually told you at this point that the hot spots are cancer.....

    Not all hot spots are cancer, just displays of high cellular activity. True these are the same look on the PET as cancer does, but the biopsy is the more definitive.

    At this point try to stay positive...

    I'm not an expert, but also if it is indeed cancer. I'd presume this to be a new instance more so than a recurrence. But I could be wrong on that.

    Out of curiosity, why were they doing a PET to that area...all of my PET scans have ended at the groin area Unless you are talking the very top, in that case seems they might do so investigating further down on the legs.

    Thoughts & Prayers,
    John

    Thanks John. All three docs
    Thanks John. All three docs seem to think the hot spots are most likely metastasis to the bone. We will get biopsy report on Monday and have an appt. At a hospital closer to home because they say chemo will be the protocol. I don't know why they did pet of whole body but they did. Trying to find courage to start battle again. Not easy with news being so recent.
  • robinleigh
    robinleigh Member Posts: 297
    #7
    arndog64 said:

    What type of head and neck
    What type of head and neck cancer did he have?

    He had tonsil bot stage 4.
    He had tonsil bot stage 4. Surgery, cisplatin, radiation. Finished treatment April 18th. Early pet scan because had a follow up for a lymph duct problem. Spoo overwhelmed right now.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    robinleigh said:

    Thanks John. All three docs
    Thanks John. All three docs seem to think the hot spots are most likely metastasis to the bone. We will get biopsy report on Monday and have an appt. At a hospital closer to home because they say chemo will be the protocol. I don't know why they did pet of whole body but they did. Trying to find courage to start battle again. Not easy with news being so recent.

    Try To Stay Calm
    I know it's very hard, and more than likely I'd be losing it myself. But so far, nothing definitive has been determined.

    Thoughts and prayers that it's not cancer. But if it is, you guys will make it through and kill it this go around.

    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    robinleigh said:

    He had tonsil bot stage 4.
    He had tonsil bot stage 4. Surgery, cisplatin, radiation. Finished treatment April 18th. Early pet scan because had a follow up for a lymph duct problem. Spoo overwhelmed right now.

    Hi Robin

    Sometimes the hot spots are just areas that are inflamed from the treatment nothing more. And remember that the PET scan is only a tool the doctor’s use and is not always correct. Like John said just try to stay calm until the biopsy, I will be putting you both in my prayers if you do mind.

    Wishing you the best
    Hondo
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    Hondo said:

    Hi Robin

    Sometimes the hot spots are just areas that are inflamed from the treatment nothing more. And remember that the PET scan is only a tool the doctor’s use and is not always correct. Like John said just try to stay calm until the biopsy, I will be putting you both in my prayers if you do mind.

    Wishing you the best
    Hondo

    Robin
    As Hondo said- nothing is conclusive until you get the biopsy results.

    Also, John- my PETs are from "mid-thigh to base of skull", though as NPC I know they go to just below my eyes. As a tall man of 6'7", I mean 5'9", perhaps the actual amount of territory covered with the range of each position is a factor. Perhaps Wilt Chamberlain's PEG would be from his lower-rib cage to his skull?!

    Lotta avenues for them to take, now, Robin. Try to stay in the Positive.

    Believe

    kcass
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    Kent Cass said:

    Robin
    As Hondo said- nothing is conclusive until you get the biopsy results.

    Also, John- my PETs are from "mid-thigh to base of skull", though as NPC I know they go to just below my eyes. As a tall man of 6'7", I mean 5'9", perhaps the actual amount of territory covered with the range of each position is a factor. Perhaps Wilt Chamberlain's PEG would be from his lower-rib cage to his skull?!

    Lotta avenues for them to take, now, Robin. Try to stay in the Positive.

    Believe

    kcass

    Robin
    Prayers outbound for you guys. Hope everything will be ok and it's not a recurrence. Sending, strength, love, light and prayers-

    Sweets
  • KareGiver
    KareGiver Member Posts: 301 Member
    #12
    sweetblood22 said:

    Robin
    Prayers outbound for you guys. Hope everything will be ok and it's not a recurrence. Sending, strength, love, light and prayers-

    Sweets

    The unknown
    Is the scariest. Sending lots of positive vibes your way...
  • adventurebob
    adventurebob Member Posts: 691
    #13
    Bone mets
    Hi Robinleigh,
    I have no experience with recurrence but my PET prior to treatment showed multiple bone mets. I received chemo and radiation to the bone. After the 2nd chemo the bone mets were gone as were all the other tumors. Hopefully the ones the docs are seeing aren't mets or recurrence. If they were; treatment works. Radiation to the bone is nothing compared to radiation to the head though the method is more time consuming and involved. And chemo; well it's chemo. I'll be praying for both of you that the biopsy is all good news. Let us know when you can,

    Bob
  • tesa
    tesa Member Posts: 123
    #14
    adventurebob said:

    Bone mets
    Hi Robinleigh,
    I have no experience with recurrence but my PET prior to treatment showed multiple bone mets. I received chemo and radiation to the bone. After the 2nd chemo the bone mets were gone as were all the other tumors. Hopefully the ones the docs are seeing aren't mets or recurrence. If they were; treatment works. Radiation to the bone is nothing compared to radiation to the head though the method is more time consuming and involved. And chemo; well it's chemo. I'll be praying for both of you that the biopsy is all good news. Let us know when you can,

    Bob

    Hondo, Such a story!
    Why
    Hondo, Such a story!

    Why does the beast come back??? Tell us more about your alternative treatments.
    Did you have surgery for your cancer.
    I feel like you've kiled the beast and prayer is powerful.
    You are such a blessing to us here. I've only been part of this family for a short time, but I always look forward to your replies and encouragement.
    God bless you
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    tesa said:

    Hondo, Such a story!
    Why
    Hondo, Such a story!

    Why does the beast come back??? Tell us more about your alternative treatments.
    Did you have surgery for your cancer.
    I feel like you've kiled the beast and prayer is powerful.
    You are such a blessing to us here. I've only been part of this family for a short time, but I always look forward to your replies and encouragement.
    God bless you

    Hi teas
    I posted my Life story under Alternative Cancer Treatment does it work or is it a Myth hope it helps

    Take care
    Hondo
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #16
    robinleigh said:

    Thanks John. All three docs
    Thanks John. All three docs seem to think the hot spots are most likely metastasis to the bone. We will get biopsy report on Monday and have an appt. At a hospital closer to home because they say chemo will be the protocol. I don't know why they did pet of whole body but they did. Trying to find courage to start battle again. Not easy with news being so recent.

    Robin; what type of biopsy
    Robin; what type of biopsy did they do? Was it a core?

    My dad had Leukemia & knowing what I do about it; I suggest you find the best University Teaching Hospital that you can find to at least get an opinion to make sure the local treatment is what they would suggest also.

    There is a gal at another board who's dad was diagnosed with Leukemia; she finally listened to me & get her dad to Sloan Kettering & found out it was not the type they thought it was- SK has better sub testing & knows more about blood/bone cancer.
  • Jamie_Ann
    Jamie_Ann Member Posts: 35
    #17
    Sending lots of positive
    Sending lots of positive thoughts and prayers...
  • tesa
    tesa Member Posts: 123
    #18
    Jamie_Ann said:

    Sending lots of positive
    Sending lots of positive thoughts and prayers...

    Sorry hondo, I meant that
    Sorry hondo, I meant that post to go in your alternative treatment story. i read it this morning and meant to post to that.
    forgive me, so mixedup everyday.

    Robin, my prayers are with you. Pray and beleive good things.
  • robinleigh
    robinleigh Member Posts: 297
    #19
    Daddisgrl said:

    Robin; what type of biopsy
    Robin; what type of biopsy did they do? Was it a core?

    My dad had Leukemia & knowing what I do about it; I suggest you find the best University Teaching Hospital that you can find to at least get an opinion to make sure the local treatment is what they would suggest also.

    There is a gal at another board who's dad was diagnosed with Leukemia; she finally listened to me & get her dad to Sloan Kettering & found out it was not the type they thought it was- SK has better sub testing & knows more about blood/bone cancer.

    We were at mayo and we go to
    We were at mayo and we go to jab Monday and Montgomery cancer center which is in our hometown mayo says they will consult by phone which
    Ever place we go. They still consider this head neck cancer and not bone cancer because it is a metastasis. Thanks, robinleigh
  • robinleigh
    robinleigh Member Posts: 297
    #20
    Hondo said:

    Hi Robin

    Sometimes the hot spots are just areas that are inflamed from the treatment nothing more. And remember that the PET scan is only a tool the doctor’s use and is not always correct. Like John said just try to stay calm until the biopsy, I will be putting you both in my prayers if you do mind.

    Wishing you the best
    Hondo

    Yes. Happy to be in your
    Yes. Happy to be in your prayers. You have inspired me to check out alternative treatment. There's a medical doctor in Atlanta who uses traditional combined with alternative. Look forward to hearing his deal.
  • robinleigh
    robinleigh Member Posts: 297
    #21
    adventurebob said:

    Bone mets
    Hi Robinleigh,
    I have no experience with recurrence but my PET prior to treatment showed multiple bone mets. I received chemo and radiation to the bone. After the 2nd chemo the bone mets were gone as were all the other tumors. Hopefully the ones the docs are seeing aren't mets or recurrence. If they were; treatment works. Radiation to the bone is nothing compared to radiation to the head though the method is more time consuming and involved. And chemo; well it's chemo. I'll be praying for both of you that the biopsy is all good news. Let us know when you can,

    Bob

    What kind of chemo did you
    What kind of chemo did you have. My husband had three cycles of cisplatin so they will change for this go round. They are not talking about radiation but I want to pursue why not. Maybe because there are four spots but I would just as soon zap them with rads. Wouldn't you.

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