SSC

Priyawins
Priyawins Member Posts: 12
in Head and Neck Cancer #1

Hi All,

I was diagnosed with SSC - Base of the tongue by july 2017.. successfully completed 33 rads & 6 chemos... After one month of treatments took PET Scan & the results say the tumor is not shrunken as expected, also never spread to any other organs. Tumor size is 20×50 mm ... Only 3 lymph nodes affected.. 

What can i expect next? Surgery or only chemos?

My oncologist has gone abroad & coming down by November 2nd week..

Keenly expecting your suggestions & comments..

 

Thanks 

Priyawins

 

Comments

  • Klingels
    Klingels Member Posts: 78
    #2
    possible surgery

    We were told if radiation and chemo doesn't work, then surgery would be the next option.

  • SuzJ
    SuzJ Member Posts: 446 Member
    #3
    Timing

    Seems a bit soon for a PET as the treatment keeps working for a while. I was told 12 weeks before a PET, then re evaluate. I think you may be a bit premature?

    Cancer isn't an overnight fix, its a lifetime of fixing.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    edited October 2017 #4
    Pet Scan

    My husband had a PET Scan a month after radiation and chemo was completed.  The PET scan said the large tumor was gone.  Guess what it wasn't and he ended up having trouble breathing within 2 months after radiation and chemo.  A second biopsy and trach and it was revealed that the tumor was back.  Once referred to a head and neck specialist we were told the tumor had never gone away and that the PET scan was done too soon after radiation and chemo.  That the swelling would be too bad to get a good reading that soon after radiation.  He ended up having surgery.  He was stage 3 due to the size of the tumor only and had no spread.  A year later a different story.

    Get a second opinion with a head and neck specialist.

  • RobLee
    RobLee Member Posts: 269 Member
    #5
    PET scan is not senstive enough to identify small tumors

    PET scan is used to locate growing tumors. It is not senstive enough to identify small tumors and does not differentiate various tissues adequately. A CT is more accurate for hard tumors but of course delivers a significant amout of radiation. MRI is most effective for soft tissues and without radiation but takes a long time and is very sensitive to small bodily movement and is contraindicated if metal implants are present.

  • Priyawins
    Priyawins Member Posts: 12
    edited October 2017 #6
    Klingels said:

    possible surgery

    We were told if radiation and chemo doesn't work, then surgery would be the next option.

    Oh... so the surgery done?

    Oh... so the surgery done?

  • Priyawins
    Priyawins Member Posts: 12
    edited October 2017 #7
    SuzJ said:

    Timing

    Seems a bit soon for a PET as the treatment keeps working for a while. I was told 12 weeks before a PET, then re evaluate. I think you may be a bit premature?

    Cancer isn't an overnight fix, its a lifetime of fixing.

    Hi

    Hi

    But our oncologist asked us to take PET after 30 days of treatment. . 

    Tats y we were hurried...

    Am worrying abt the surgery. .. 

    What may be the after effects?

  • armana
    armana Member Posts: 97 Member
    edited October 2017 #8
    My Journey

    1st pet scan 3 1/2 months post 6 1/2 weeks of radiation showed small residual tumoy may be present and recommended a follow up pet scan in 6 months.

    The follow up scan showed everything to be clear. Radiataion works for a long time after the treatment s completed and a month may be premature.

     

  • Klingels
    Klingels Member Posts: 78
    #9
    Priyawins said:

    Oh... so the surgery done?

    Oh... so the surgery done?

    Not yet

    We find out Thursday if he still has cancer or not.

  • Priyawins
    Priyawins Member Posts: 12
    #10
    Ear pain

    Also im experiencing a pain from jaw to ear,did anybody has the same??

  • OKCnative
    OKCnative Member Posts: 326 Member
    #11
    My oncologist at my cancer

    My oncologist at my cancer center says they will not perform a PET until at least 3 months out. She said the chemo and radiation are still working until then. I was trying to get mine done before the end of the year - due to insurance rolling over. Luckily, the end of December is exactly 3 months, so they got me in then.

    I can't imagine a 30 day PET being the way to go if the radiation and chemo are still actively working.

  • Andy13460
    Andy13460 Member Posts: 115
    #12
    Scans

    I had a CT scan Head & Neck and chest at dead on 11 weeks my ENT wanted it as a base line. I see her every 8 weeks for the first year next appointment is this Thursday. I assume she will call for more scans again this time. Not heard anything from the first scan so I assume she is happy.

  • Priyawins
    Priyawins Member Posts: 12
    edited October 2017 #13
    SuzJ said:

    Timing

    Seems a bit soon for a PET as the treatment keeps working for a while. I was told 12 weeks before a PET, then re evaluate. I think you may be a bit premature?

    Cancer isn't an overnight fix, its a lifetime of fixing.

    Hi

    Hi

    But our oncologist asked us to take PET after 30 days of treatment. . 

    Tats y we were hurried...

    Am worrying abt the surgery. .. 

    What may be the after effects?

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited October 2017 #14
    I expect some good answers, but November 2nd sucks

    Priyawns,

    I say, you have to wait and see. Your doctor should know all about PET scans and timelines.  I assume there is something he wants to know or see at 1 month, hence the scan.  If your doctor is out, who told you the tumor has not shrunken as expected?

    You have been treated, treatments usually help the situation and you may be fine.

    Matt

  • Priyawins
    Priyawins Member Posts: 12
    #15
    Ladylacy said:

    Pet Scan

    My husband had a PET Scan a month after radiation and chemo was completed.  The PET scan said the large tumor was gone.  Guess what it wasn't and he ended up having trouble breathing within 2 months after radiation and chemo.  A second biopsy and trach and it was revealed that the tumor was back.  Once referred to a head and neck specialist we were told the tumor had never gone away and that the PET scan was done too soon after radiation and chemo.  That the swelling would be too bad to get a good reading that soon after radiation.  He ended up having surgery.  He was stage 3 due to the size of the tumor only and had no spread.  A year later a different story.

    Get a second opinion with a head and neck specialist.

    Hi

    Hi

    So how about after surgery effects,?

    How's swallowing, speech?

  • Priyawins
    Priyawins Member Posts: 12
    #16
    RobLee said:

    PET scan is not senstive enough to identify small tumors

    PET scan is used to locate growing tumors. It is not senstive enough to identify small tumors and does not differentiate various tissues adequately. A CT is more accurate for hard tumors but of course delivers a significant amout of radiation. MRI is most effective for soft tissues and without radiation but takes a long time and is very sensitive to small bodily movement and is contraindicated if metal implants are present.

    Hi

    Hi

    If so why all Oncologists suggest to take PET rather than MRI or CT after treatments?

     

  • Priyawins
    Priyawins Member Posts: 12
    #17
    armana said:

    My Journey

    1st pet scan 3 1/2 months post 6 1/2 weeks of radiation showed small residual tumoy may be present and recommended a follow up pet scan in 6 months.

    The follow up scan showed everything to be clear. Radiataion works for a long time after the treatment s completed and a month may be premature.

     

    Hi

    Hi

    So now no more cancer ah

    Congrats:))

    Pls let me know how many chemos & radios u undergone & wat was the size of tumor,?

  • Priyawins
    Priyawins Member Posts: 12
    #18
    Andy13460 said:

    Scans

    I had a CT scan Head & Neck and chest at dead on 11 weeks my ENT wanted it as a base line. I see her every 8 weeks for the first year next appointment is this Thursday. I assume she will call for more scans again this time. Not heard anything from the first scan so I assume she is happy.

    Good..
    Congrats

    Good..

    Congrats

  • Priyawins
    Priyawins Member Posts: 12
    #19
    CivilMatt said:

    I expect some good answers, but November 2nd sucks

    Priyawns,

    I say, you have to wait and see. Your doctor should know all about PET scans and timelines.  I assume there is something he wants to know or see at 1 month, hence the scan.  If your doctor is out, who told you the tumor has not shrunken as expected?

    You have been treated, treatments usually help the situation and you may be fine.

    Matt

    Hi

    Hi

    In the impression they have quoted there is not much significant difference compared to previous MRI.. That's how we be decided 

    Still waiting for my Oncologist. 

    Tnx

  • Klingels
    Klingels Member Posts: 78
    edited November 2017 #20
    Klingels said:

    Not yet

    We find out Thursday if he still has cancer or not.

    CT scan

    My husband‘s CT scan was clear, so he won’t need surgery.

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