What happens when the post treatment PET is not clean

buzz99
buzz99 Member Posts: 404
in Head and Neck Cancer #1
Buzz will be having an MRI on Tuesday to get a better picture of the metabolically active areas on his tongue and right neck. The right neck area was negative before treatment so this is a new development which has grown in size and brightness between scans. A new spot has appeared on his tongue since the last scan. What happens when the cancer comes back so soon? Is a different chemo tried or just surgery? We have so many questions going through our heads and keep thinking "what if?" Anyone have their cancer come back (or maybe it never went away)6 months after the end of treatment? Very scared. Karen

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Karen
    Yes it is scary not knowing for sure but try to hang in till you get the results of the MRI and hear what the doctor has to say. When my NPC came back a second time I had to do a full Radiation and Chemo all over again. I hope and pray that Buzz will not have to go through that.

    Wishing you both the best
    Hondo
  • Pam M
    Pam M Member Posts: 2,196
    #3
    Depends
    Karen,

    Sorry to hear about the test results. I think different docs have different approaches they recommend, depending on patient and cancer, when post-treatment folks have dirty scans. Hondo got poisoned and burned again; I got surgery. One of my affected lymph nodes showed what docs called "incomplete response to treatment" - in my case, surgery took care of that - clean scans afterward. I had the surgery nine months after what I thought was the end of treatment. Hope you two and your docs come up with a plan of attack soon.
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    Pam M said:

    Depends
    Karen,

    Sorry to hear about the test results. I think different docs have different approaches they recommend, depending on patient and cancer, when post-treatment folks have dirty scans. Hondo got poisoned and burned again; I got surgery. One of my affected lymph nodes showed what docs called "incomplete response to treatment" - in my case, surgery took care of that - clean scans afterward. I had the surgery nine months after what I thought was the end of treatment. Hope you two and your docs come up with a plan of attack soon.

    Different treatments
    is probably the key word. I remember a mutual family fellow who was diagnosed about the same time as me. I believe his never went completely away the first time around and was in a similar situation as your husband. He had Brachy thearapy done which is the insertion of the radioactive seeds. This may be an option as I vaguely remember you saying this may be your husband's second radiation regimen? A chemo which attacks cancer opposite his previous chemo can also be utilized, i.e. "targeted therapy" vs. "kill all chemos." Thirdly new surgey capabilities with the "Davinci Robot" are now widely available which may make previous unacessible sites acessible. Lot's of options to explore yet, see what the experts advise.
  • buzz99
    buzz99 Member Posts: 404
    #5
    Thanks for the response
    Thank you ratface, Pam, and Hondo for the responses. I really needed to hear that. The oncologist wants us to see the head/neck surgeon. We are hoping to get the doc who did Buzz's neck dissection 9 1/2 years ago but she is so busy that her office wants us to send all the reports for her to study before we can make an appt. I hate having any delays and want to deal with this pronto. Karen
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #6
    STAY STRONG AND BELIEVE
    Hi Karen, I cannot begin to understand what you and Buzz are going through, but want you to know your family is in my family's prayers.

    Remember there are allot of members here who have successfully battled the beast more that once and are doing fine.

    Best!!

    Mike
  • Glenna M
    Glenna M Member Posts: 1,576
    #7
    Understand your fears...
    Hearing that anything lights up on a scan is as scary as hearing the original diagnosis...cancer.

    I will be thinking of you and Buzz today as he goes for his MRI and praying that you get all the answers to help you through whatever may lie ahead.

    Stay strong,
    Glenna
  • Jan Trinks
    Jan Trinks Member Posts: 477
    #8
    Good Luck
    Karen:

    Sorry to hear that news but praying that everything will work out for you and Buzz.

    God Bless!

    Jan (Basketcase)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Jan Trinks said:

    Good Luck
    Karen:

    Sorry to hear that news but praying that everything will work out for you and Buzz.

    God Bless!

    Jan (Basketcase)

    Photo
    Nice photo Jan....

    I think you have that picture posting thing down....

    Best,
    John
  • caroljean11
    caroljean11 Member Posts: 12
    #10
    buzz99 said:

    Thanks for the response
    Thank you ratface, Pam, and Hondo for the responses. I really needed to hear that. The oncologist wants us to see the head/neck surgeon. We are hoping to get the doc who did Buzz's neck dissection 9 1/2 years ago but she is so busy that her office wants us to send all the reports for her to study before we can make an appt. I hate having any delays and want to deal with this pronto. Karen

    Hi,
    I am new on this site
    Hi,

    I am new on this site and read your posts. Someone very close to me has the same situation going on. He gets a bronchoscopy tomorrow to see if the 3 lymph nodes are squamous cell positive.
    What came out of it for your husband?
    Carol
  • buzz99
    buzz99 Member Posts: 404
    #11
    Skiffin16 said:

    Photo
    Nice photo Jan....

    I think you have that picture posting thing down....

    Best,
    John

    A ray of hope
    Buzz saw the Radiation Oncologist on Thursday. The RO is not convinced that the spots which light up on the PET are indeed cancer. It is common to have areas light up especially after two series of radiation (recently and 9 years ago) and a neck dissection (9 1/2 years ago). I seem to remember that Hondo has had such an experience. The RO still advised biopsies but if they are negative, that could mean the doc missed getting the cancer cells. Positive is positive and we will go from there. We are still trying to get an appointment with the surgeon. If they don't call by next Wednesday, we will again call and bug them. We have already sent all the scan reports and our Oncologist has spoken with the surgeon. We hate all this waiting.
  • Glenna M
    Glenna M Member Posts: 1,576
    #12
    buzz99 said:

    A ray of hope
    Buzz saw the Radiation Oncologist on Thursday. The RO is not convinced that the spots which light up on the PET are indeed cancer. It is common to have areas light up especially after two series of radiation (recently and 9 years ago) and a neck dissection (9 1/2 years ago). I seem to remember that Hondo has had such an experience. The RO still advised biopsies but if they are negative, that could mean the doc missed getting the cancer cells. Positive is positive and we will go from there. We are still trying to get an appointment with the surgeon. If they don't call by next Wednesday, we will again call and bug them. We have already sent all the scan reports and our Oncologist has spoken with the surgeon. We hate all this waiting.

    Waiting...
    Yes, waiting is the hardest part and we all seem to spend a lot of our time waiting for results, call backs, appointments, etc.

    I just had a 2 year PET scan on June 14th with a spot in each lung lighting up along with lymph nodes in the center of my lungs. The surgeon told me that he would not be concerned if these same areas hadn't shown up on the CT scan also. I think a lot of doctors feel that there are a lot of false positives on the PET.

    I know that it's easy for someone else to say this to you but please think positive while you wait for the biopsy.

    Stay well and stay strong,
    Glenna
  • caroljean11
    caroljean11 Member Posts: 12
    #13
    Glenna M said:

    Waiting...
    Yes, waiting is the hardest part and we all seem to spend a lot of our time waiting for results, call backs, appointments, etc.

    I just had a 2 year PET scan on June 14th with a spot in each lung lighting up along with lymph nodes in the center of my lungs. The surgeon told me that he would not be concerned if these same areas hadn't shown up on the CT scan also. I think a lot of doctors feel that there are a lot of false positives on the PET.

    I know that it's easy for someone else to say this to you but please think positive while you wait for the biopsy.

    Stay well and stay strong,
    Glenna

    I will say a prayer for both
    I will say a prayer for both of you. The more I read on this, the more I find that their are several reasons lymph nodes can light up on a PET scan.

    Take care,
    Carol
  • Hondo
    Hondo Member Posts: 6,636 Member
    #14
    buzz99 said:

    A ray of hope
    Buzz saw the Radiation Oncologist on Thursday. The RO is not convinced that the spots which light up on the PET are indeed cancer. It is common to have areas light up especially after two series of radiation (recently and 9 years ago) and a neck dissection (9 1/2 years ago). I seem to remember that Hondo has had such an experience. The RO still advised biopsies but if they are negative, that could mean the doc missed getting the cancer cells. Positive is positive and we will go from there. We are still trying to get an appointment with the surgeon. If they don't call by next Wednesday, we will again call and bug them. We have already sent all the scan reports and our Oncologist has spoken with the surgeon. We hate all this waiting.

    Hi Buzz
    You are right I still light up the PET scans like a Christmas tree every time for the last 5 ½ years. I really don’t understand why they even bother taking them anymore, but it is a must do every 6 months.

    You are right about the hate to wait game; I too can’t understand why it takes so long for them to get back to us. Keeping you in prayer

    Hondo
  • caroljean11
    caroljean11 Member Posts: 12
    #15
    Hondo said:

    Hi Buzz
    You are right I still light up the PET scans like a Christmas tree every time for the last 5 ½ years. I really don’t understand why they even bother taking them anymore, but it is a must do every 6 months.

    You are right about the hate to wait game; I too can’t understand why it takes so long for them to get back to us. Keeping you in prayer

    Hondo

    Hondo,
    You just gave me a
    Hondo,

    You just gave me a ray of hope for John. Now, his first PET was clean but it was only 3 months post chemo/rad. I am hoping his bx comes back clean Tuesday and this is just a fluke like yours.

    Happy Fourth!
    Carol
  • caroljean11
    caroljean11 Member Posts: 12
    #16
    buzz99 said:

    A ray of hope
    Buzz saw the Radiation Oncologist on Thursday. The RO is not convinced that the spots which light up on the PET are indeed cancer. It is common to have areas light up especially after two series of radiation (recently and 9 years ago) and a neck dissection (9 1/2 years ago). I seem to remember that Hondo has had such an experience. The RO still advised biopsies but if they are negative, that could mean the doc missed getting the cancer cells. Positive is positive and we will go from there. We are still trying to get an appointment with the surgeon. If they don't call by next Wednesday, we will again call and bug them. We have already sent all the scan reports and our Oncologist has spoken with the surgeon. We hate all this waiting.

    Good thing you are not
    Good thing you are not waiting for the surgeon,,,keep calling them. I hate that about cancer. I used to work for an oncologist and those docs sometimes remove themselves completely when it comes to how the patient feels and the family also!
  • buzz99
    buzz99 Member Posts: 404
    #17
    Glenna M said:

    Waiting...
    Yes, waiting is the hardest part and we all seem to spend a lot of our time waiting for results, call backs, appointments, etc.

    I just had a 2 year PET scan on June 14th with a spot in each lung lighting up along with lymph nodes in the center of my lungs. The surgeon told me that he would not be concerned if these same areas hadn't shown up on the CT scan also. I think a lot of doctors feel that there are a lot of false positives on the PET.

    I know that it's easy for someone else to say this to you but please think positive while you wait for the biopsy.

    Stay well and stay strong,
    Glenna

    Glenna
    So sorry to hear you have positive nodes in your lungs. Is there any chemo for your situation? How are you feeling? Karen
  • Glenna M
    Glenna M Member Posts: 1,576
    #18
    buzz99 said:

    Glenna
    So sorry to hear you have positive nodes in your lungs. Is there any chemo for your situation? How are you feeling? Karen

    Karen
    I was supposed to have surgery today, VATS wedge resection on the right lung and a bronchoscopy for the nodes, but everything has been cancelled because of poor lung function. The surgeon wants me to see a pulmonologist first, then hopefully surgery will be rescheduled and then I meet with my Oncologist again to discuss what treatment plan is available.

    Right now I'm sitting here waiting for the doctor to call with my appointment. Waiting for the phone to ring is pure h*ll.

    Hope you and Buzz had a wonderful 4th of July weekend.

    Stay well,
    Glenna
  • buzz99
    buzz99 Member Posts: 404
    #19
    caroljean11 said:

    Good thing you are not
    Good thing you are not waiting for the surgeon,,,keep calling them. I hate that about cancer. I used to work for an oncologist and those docs sometimes remove themselves completely when it comes to how the patient feels and the family also!

    Post PET Scan with hot spots
    We finally saw the head/neck surgeon yesterday. After a month of worry, he told us he can't biopsy "hot spots" when the CT and MRI did not identify any kind of mass. So will wait for the next scan and go from there. We have been advised to keep the stomach tube for now in case we need it. So all of you with hot spots don't assume it is cancer but just "metabolically active" areas. Karen
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #20
    buzz99 said:

    Post PET Scan with hot spots
    We finally saw the head/neck surgeon yesterday. After a month of worry, he told us he can't biopsy "hot spots" when the CT and MRI did not identify any kind of mass. So will wait for the next scan and go from there. We have been advised to keep the stomach tube for now in case we need it. So all of you with hot spots don't assume it is cancer but just "metabolically active" areas. Karen

    Hoping for the Best
    Hi Karen, Just wanted to let you and Buzz know you are in our thoughts and prayers. Homer & Connie

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