cutaneous follicle center cell lymphoma ct scan

samd
samd Member Posts: 8
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello All,

Thank you for all the information I have seen on this site and reading your discussions.

I have a Primary cutaneous follicle center cell lymphoma. They give me a very good

prognosis. However, I was bothered by the CT Scan which showed a non specific finding

of haziness in the mesentery lymph nodes as being stranded and small, but did not see

a mass. Am I being too paranoid, by requesting a pet scan? I have a 2 year old and a 10

year old, both of whom are adopted. I am 44 years old and I want to be extra positive

about these things.

Thank you in advance for your input.

Sam in Florence, KY

Comments

  • catwink22
    catwink22 Member Posts: 281
    #2
    Use the tools
    Hi Sam! Sorry you have to be posting here, but you've come to a good place! In my opinion I like to use every tool that is available to me out there. I think a PET is definitely ONE of the tools to use. There is only so much any test can tell, but with a range of them you can get a better picture of what is going on. If nothing else at least you can establish a base line of where things started and then monitor its pace and progression. Paranoia is part of this journey and it's a hard thing to get by, but listen to your instincts and your body and you'll make the right choices. Good Luck to you and let us know how your scan goes!
    Cat
  • samd
    samd Member Posts: 8
    #3
    catwink22 said:

    Use the tools
    Hi Sam! Sorry you have to be posting here, but you've come to a good place! In my opinion I like to use every tool that is available to me out there. I think a PET is definitely ONE of the tools to use. There is only so much any test can tell, but with a range of them you can get a better picture of what is going on. If nothing else at least you can establish a base line of where things started and then monitor its pace and progression. Paranoia is part of this journey and it's a hard thing to get by, but listen to your instincts and your body and you'll make the right choices. Good Luck to you and let us know how your scan goes!
    Cat

    PET SCAN
    Thanks for the reply, I go tomorrow for pet scan, I will let you know the results.

    Sam in Florence,KY
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
    NON SPECIFIC
    Sam,that word "non specific" always puzzled me too. What it means is there is something going on, but they do not know what it is. It may or may not be related to what they are looking for. I had that same wording when I had my pet scan for lymphoma. it said I had non specific activity in my colon. It really scared me. Come to find out it was a blip that sometimes happens with radioactive scans. I had a colonoscopy soon afterwards and the dr. said it was all clear in the colon. You are not being paranoid at all. It is your body and you want to know what is going on with it. I know they use all those big words when they dictate the report. It seems they could be more on our level when talking . They must know we are going to get those reports and want to know what those terms mean. I do have the thickening in the mesenteric sclera, but never got an explanation. It was never discussed and the onc. never mentioned it on the findings as important. I do have enlarged nodes in that area as well.
    You have come to a great site for information. I have found several people are a wealth of info. and are glad to share it with us. Thank God for those people on this site. John
  • samd
    samd Member Posts: 8
    #5
    COBRA666 said:

    NON SPECIFIC
    Sam,that word "non specific" always puzzled me too. What it means is there is something going on, but they do not know what it is. It may or may not be related to what they are looking for. I had that same wording when I had my pet scan for lymphoma. it said I had non specific activity in my colon. It really scared me. Come to find out it was a blip that sometimes happens with radioactive scans. I had a colonoscopy soon afterwards and the dr. said it was all clear in the colon. You are not being paranoid at all. It is your body and you want to know what is going on with it. I know they use all those big words when they dictate the report. It seems they could be more on our level when talking . They must know we are going to get those reports and want to know what those terms mean. I do have the thickening in the mesenteric sclera, but never got an explanation. It was never discussed and the onc. never mentioned it on the findings as important. I do have enlarged nodes in that area as well.
    You have come to a great site for information. I have found several people are a wealth of info. and are glad to share it with us. Thank God for those people on this site. John

    ct scan
    Thanks John,

    I hate to admit it but I find myself studying all this mess now. Knowledge is power.

    Thank you for sharing. I received word yesterday my gene study report came back negative,

    whatever that exactly means I am not sure either, however I was told this was a good thing.

    I hope you are doing well in your treatments.

    Sam in Florence, KY
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #6
    samd said:

    ct scan
    Thanks John,

    I hate to admit it but I find myself studying all this mess now. Knowledge is power.

    Thank you for sharing. I received word yesterday my gene study report came back negative,

    whatever that exactly means I am not sure either, however I was told this was a good thing.

    I hope you are doing well in your treatments.

    Sam in Florence, KY

    ct scan
    Sam, that sounds great. I am fairly new to the site myself but am constantly on the computer. the gene study is to determine which genes have crossed. Mine was the 14-18 gene. It is called a FISH STUDY. See if you can find out which of your genes crossed on that study. That is what determines exactly what the diagnosis is. john

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