New with questions

Anaid2160
Anaid2160 Member Posts: 20
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I was diagnosed with aggressive b type lymphoma stage 2 July 28 2017. I had six Rchop treatments at 21 day increments. Halfway through I had ct scan. No cancer. Yipee!! I had 1st PET scan December 19. It showed 1 small hot spot. I went to lymphoma specialist in January. The spot is too small to biopsay so they repeated scan. Spot still same size. Wait 10 weeks and repeat. Now spot has doubled. I still feel good. They did biopsy today. It’s in my abdomen where it 1st presented. Will a false positive grow?

Comments

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #2
    Short answer

    Wait for the biopsy results. Don’t jump the gun.

  • Evarista
    Evarista Member Posts: 336 Member
    #3
    "False" positive

    Not everything that lights up is a tumor. Recall how PET scans work: 1) you starve your body of sugar for a day; 2) your body gets fed a radioactive sugar; 3) cells that are dividing rapidly take up the radioactive sugar faster and to a greater extent than normal surrounding tissue.  So you get a "signal".  Since many tumors divide rapidly, a signal can indicate a tumor.  But tumors are not the only cells that divide rapidly.  For example, my shoulder joints light up big time because I have severe bursitis (inflammation).  I have a lesion in my mouth that lights up...Not a tumor.

    You are just going to need to wait for the biopsy results to see whether or not this is a recurrence.  Hopefully not, but if it is, seeing a lymphoma specialist is definitely the way to go.  Good luck with it.

  • Anaid2160
    Anaid2160 Member Posts: 20
    #4
    Thank you for responses.

    Thank you for responses.

    I don’t see my Oncologist for over 2 weeks. I will try not to drive myself crazy while I wait.

  • po18guy
    po18guy Member Posts: 1,508 Member
    #5
    Lots of things light up a PET.

    PETs are not absolutely diagnostic of anytihng. They assist the radiologist and hematologist to assess what might be glowing - normally after a CT scan finds any masses. Your liver always glows a deep red and it is used as a control or baseline. Your brain also lights up. So, the PET finds your liver at work and your brain's cogitive activity. That is no indication of cancer at all - only normal metabolism. Does healing light up? Yes. Does simple inflamation? Yes. As well as other things. It can be many things and for that reason is no cause to panic.

  • Anaid2160
    Anaid2160 Member Posts: 20
    edited May 2018 #6
    Update. I had my appointment
    Update. I had my appointment and spot is not lymphoma. Thank you for encouragement. I go again in 10 weeks for ct with contrast. I hope to stay in remission. At what point do ports get removed?
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #7
    Anaid2160 said:

    Update. I had my appointment
    Update. I had my appointment and spot is not lymphoma. Thank you for encouragement. I go again in 10 weeks for ct with contrast. I hope to stay in remission. At what point do ports get removed?

    Port

    Anaid, port removal varies considerably depending on several variables.

    An oncologist will recommend that you keep it if there is liklihood of relapse soon. The oncologist bases this assessment in turn on several other variables, such as the strain of the cancer, and how well the cancer responded to therapy.  Various blood test results from the draws pulled before chemo is begun are also linked to liklihood of remission holding or failing, but these are just statistical indicators, and do not say for certain what will transpire with any given individual.

    Further, some doctors individually just have differing views of when to remove the port, and some cancer centers may also have guidelines. So there is no one, easy answer.   My doctor had my port removed as soon as my last PET was done, whereas the same group of doctors had my neighbor, who also had advanced lymphoma, keep his port in for two years after he entered full remission.

    And also, doctors to some extent will consider the wishes of the patient.

    In general, I would not rush the issue, and follow the doctor's guidance.  It is easier to keep a port than have one removed and then later have another installed.

    max

  • Anaid2160
    Anaid2160 Member Posts: 20
    #8
    Thank you Max. The port doesn

    Thank you Max. The port doesn’t bother me. I was curious. I agree I wouldn’t want to have it put back. I appreciate the feedback I get on this forum

  • po18guy
    po18guy Member Posts: 1,508 Member
    #9
    Great news!

    A lot less to worry about. As to the port, you can simply discuss that with your hematologist. Your call, but doctor can help you make an informed decision.

  • lindary
    lindary Member Posts: 711 Member
    #10
    port

    My cancer was found in a swollen lymph node in my abdomen. I had my port put in Jan 2015. My treatment for follicular non-hodgkins lymphoma consisted of 6 cycles of R-Chop followed by 3 cycles of RICE when the PET scan showed some activity in the abdomen. Last Chemo was in Oct 2016 and I started 2 years of Rituxan Maintenance. Through it all of this the port was my savior. The veins in my left arm gave out about the time the port was put in so the port has helped to keep the veins in my right arm healthy. The Rituxan was completed Oct of last year. When my onc asked about taking the port out I told her I'd like to keep it a little longer. I amI'll also see what my onc says.  thinking that if everything is ok near the end of this year I will have it taken out. But as Po says, 

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