PET not so good

carolp99
carolp99 Member Posts: 70
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Almost 1year in remission.  Had cat scans and PET.  The cat scans were good but the PET showed a hot spot at the base of my tongue .  Sent me next door to have bloodwork done (which came out fine) and set up an appt. wit an ENT on the 31st of this month.   Scared, depressed and mad.  Want to think everything is fine, but once you've had stage 4 cancer w/bone marrow involvement it's really hard to be positive.  Any one else have any knowledge about this?

Comments

  • Shoopy
    Shoopy Member Posts: 210
    #2
    So Sorry...

    Carolp99,

    I am so sorry about your recent PET scan.  While my situation is completely different I do understand the scared, depressed, and mad portion.  Trust in yourself.  Trust in your doctors.  Most of all, Trust in God.  He is good and he will provide.

    I've said a prayer for you!

    Karl 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    Pet Result

    Carol,

    I have no familiarity with what you are dealing with, but why see an ENT for what a PET shows is very possibly the lymphoma ? Personally, I think I would demand that an oncologist explain it. 

  • jimwins
    jimwins Member Posts: 2,107
    #4
    Hi Carol

    I'm sorry you didn't get such good news and I understand your feelings.  I tend to agree with Max as to an oncologist but I am not very knowledgeable as to ENT expertise other than the obvious. 

    Hang in there and know you are in my thoughts.  Please keep us updated and come here and talk anytime you like and know we are here for you.

    Big hugs,

    Jim

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #5
    jimwins said:

    Hi Carol

    I'm sorry you didn't get such good news and I understand your feelings.  I tend to agree with Max as to an oncologist but I am not very knowledgeable as to ENT expertise other than the obvious. 

    Hang in there and know you are in my thoughts.  Please keep us updated and come here and talk anytime you like and know we are here for you.

    Big hugs,

    Jim

    Carol

    I have been reading a lot about prostate cancer lately, since one friend is about to die after a 13 year struggle with it, and another died five years ago, after 12 years.  Both initially were sent to urologists for over a year, who hee-hawed around with antibiotics and other worthless, stupid therapies.  By the time they got to an oncologist who could treat their actural problem -- CANCER -- they were both stage 4.   Another friend went to a urologists for bleeding in the urine.  The doctor devised a bizarre "scraping" treatment, which shaved the inside of the bladder.  He died of bladder cancer not long afterward....

    Over the last year or so, I can recall a few people writing here who wasted time with ENTs.  Not ever their fault, just a fact.  I suspect that their cases are analogous to cancer patients who lose precious time with ENTS, who can treat an ear infection very well, but not NHL.

    Two things I am convinced of on a personal level:  Do not go to a non-oncologist for what may be cancer, and never agree to "watch and wait." If I have a problem, fix it now. I have no interest in "waiting" until it is at a fatal stage.

    I hope your "hot spot" is NOT cancer.

    Bless you,

    max

  • carolp99
    carolp99 Member Posts: 70
    #6
    Shoopy said:

    So Sorry...

    Carolp99,

    I am so sorry about your recent PET scan.  While my situation is completely different I do understand the scared, depressed, and mad portion.  Trust in yourself.  Trust in your doctors.  Most of all, Trust in God.  He is good and he will provide.

    I've said a prayer for you!

    Karl 

    PET

    It was my oncologist who set up the appt.  i would imagine to see if he needs to do a biopsy.  I trust my oncologist completely.  I don't think that he feels like it's the lymphoma.  I also had the orbital cancer when they discovered the stage 4 cancer.  I'm mad,sad and anxious all the time now.  The thoughts of doing treatments again scares me so, because I know what to expect now.  No one knows what you have to endure if they haven't gone through it.  That's why I always turn to everyone here,

  • carolp99
    carolp99 Member Posts: 70
    #7
    Max Former Hodgkins Stage 3 said:

    Carol

    I have been reading a lot about prostate cancer lately, since one friend is about to die after a 13 year struggle with it, and another died five years ago, after 12 years.  Both initially were sent to urologists for over a year, who hee-hawed around with antibiotics and other worthless, stupid therapies.  By the time they got to an oncologist who could treat their actural problem -- CANCER -- they were both stage 4.   Another friend went to a urologists for bleeding in the urine.  The doctor devised a bizarre "scraping" treatment, which shaved the inside of the bladder.  He died of bladder cancer not long afterward....

    Over the last year or so, I can recall a few people writing here who wasted time with ENTs.  Not ever their fault, just a fact.  I suspect that their cases are analogous to cancer patients who lose precious time with ENTS, who can treat an ear infection very well, but not NHL.

    Two things I am convinced of on a personal level:  Do not go to a non-oncologist for what may be cancer, and never agree to "watch and wait." If I have a problem, fix it now. I have no interest in "waiting" until it is at a fatal stage.

    I hope your "hot spot" is NOT cancer.

    Bless you,

    max

    PET

    Max,

    i would never ever do a wait and see.  I'll keep the appt. and go From there.  Hoping it's just an infection.

     

  • carolp99
    carolp99 Member Posts: 70
    #8
    Max Former Hodgkins Stage 3 said:

    Carol

    I have been reading a lot about prostate cancer lately, since one friend is about to die after a 13 year struggle with it, and another died five years ago, after 12 years.  Both initially were sent to urologists for over a year, who hee-hawed around with antibiotics and other worthless, stupid therapies.  By the time they got to an oncologist who could treat their actural problem -- CANCER -- they were both stage 4.   Another friend went to a urologists for bleeding in the urine.  The doctor devised a bizarre "scraping" treatment, which shaved the inside of the bladder.  He died of bladder cancer not long afterward....

    Over the last year or so, I can recall a few people writing here who wasted time with ENTs.  Not ever their fault, just a fact.  I suspect that their cases are analogous to cancer patients who lose precious time with ENTS, who can treat an ear infection very well, but not NHL.

    Two things I am convinced of on a personal level:  Do not go to a non-oncologist for what may be cancer, and never agree to "watch and wait." If I have a problem, fix it now. I have no interest in "waiting" until it is at a fatal stage.

    I hope your "hot spot" is NOT cancer.

    Bless you,

    max

    PET

    Max,

    i would never ever do a wait and see.  I'll keep the appt. and go From there.  Hoping it's just an infection.

     

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #9
    carolp99 said:

    PET

    Max,

    i would never ever do a wait and see.  I'll keep the appt. and go From there.  Hoping it's just an infection.

     

    Hot spot....

    Hi Carol,

    I'm so sorry your PET showed a hot spot. It's the one thing we hate to hear when we get scan results back. But...like you said, it may be an infection and nothing cancer related. I'll be keeping you in my prayers, you've been through enough already! Much love....Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 62) In remission

     

  • carolp99
    carolp99 Member Posts: 70
    #10
    allmost60 said:

    Hot spot....

    Hi Carol,

    I'm so sorry your PET showed a hot spot. It's the one thing we hate to hear when we get scan results back. But...like you said, it may be an infection and nothing cancer related. I'll be keeping you in my prayers, you've been through enough already! Much love....Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 62) In remission

     

    Sue

    Thank you and everyone else for their replies.

  • carolp99
    carolp99 Member Posts: 70
    #11
    allmost60 said:

    Hot spot....

    Hi Carol,

    I'm so sorry your PET showed a hot spot. It's the one thing we hate to hear when we get scan results back. But...like you said, it may be an infection and nothing cancer related. I'll be keeping you in my prayers, you've been through enough already! Much love....Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 62) In remission

     

    Sue

    Thank you and everyone else for their replies.

  • Rocquie
    Rocquie Member Posts: 869 Member
    #12
    Carol

    I am glad your CT scan and blood work were good but sorry about the hot spot on your PET. I will be interested in knowing what the ENT doctor thinks about it. I am sure he will confer with your oncologist. Perhaps it is some type of infection; you didn't mention if you have any other symptoms.

    You are understandably scared. I suppose after we've had cancer, we will always worry about our health (and so will the doctors who have cared for us).

    Prayers and (((hugs)))

    Rocquie

     

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