False positive PET

Sandy Ray
Sandy Ray Member Posts: 150 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

So in December I had a PET scan with Deauville score 5. One of the nodes where my original diagnosis in 2017 showed SUV uptake of 20. Local oncologist sent me to University Hospital in state. They looked at PET scan and begin talking about clinical trial CAR T. This was second relapse after RCHOP first line of treatment and Auto SCT in 2020. They did a needle biopsy no sign of cancer. Then an incision biopsy came back as Reactive follicular hyperplasia. I speak with the University Oncologist next week. In 2017 and 2020 my SUV was 40. I have NLPHL that transforms into Large B cell T cell rich NHL. I did have RSV the week of or before the PET scan.

So could that cause a false positive of SUV 20? I think my local oncologist is great but he cannot offer third line treatments like CAR-T or Bi-specifics that is why I was referred to the University Oncologist . Just not sure I feel comfortable with the team doing the biopsy or pathologist.

Not to look a gift horse in the mouth because no sign of cancer sounds great but supposedly the cancer was caught earlier and areas on PET scan were small.
Any advice or thoughts appreciated. Or questions to ask the Oncologist at next weeks meeting.

Comments

  • Sandy Ray
    Sandy Ray Member Posts: 150 Member
    #2

    Just another note I see where they said it is progressive transformation of germinal centers and fibrosis

  • Sandy Ray
    Sandy Ray Member Posts: 150 Member
    #3

    well I guess I will answer some of my questions by reading earlier response from Max.

    I will request my biopsy be sent off to some specialist to see what they say. Sounds like it could be the NLPHL that is back.

    Still open to anyone who wants to chime in.

  • po18guy
    po18guy CSN Member Posts: 1,529 Member
    #4

    I found that pathology is as much art as science. Therefore, it might be good to seek an artist as much as a scientist. My first pathology report came back as "abnormal B and T cells" and nothing more (Stage IV PTCL-NOS). The second relapse of the first lymphoma (and first relapse of the second lymphoma) took about two-to-three weeks to decide, even with regular prodding from my hematologist. The final result was a relapse of a lymphoma which I had never been diagnosed with.

    At some level, our cancer is our own, and ours only. Even relapses are not always identical, as the very nature of the illness is a mutation. Occasionally, mutations mutate and this is confusing to pathologists. Sandy Ray, I think that your hematologist can make an excellent case for insurance to pay for additional testing, due to the now known confusing state of NLPHL relapse - and their liability for failing to cover necessary diagnostics. On top of this, there is the lymphoma's recent W.H.O. re-classification to Nodular Lymphocyte Predominant B-Cell Lymphoma. A new look is being taken at it.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 CSN Member Posts: 3,829
    #5

    Sandy, I sent you a PM earlier today.

    Max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 CSN Member Posts: 3,829
    edited March 14 #6

    Sandy and Shady,

    I came across a discussion of this drug ( Copanlisib )at the NIH website. The doctor said it is a second- and third-line drug against refractory follicular lymphomas, of which NLPHL is one. I know nothing further about it.

    https://chemocare.com/druginfo/copanlisib

    https://www.fda.gov/news-events/press-announcements/fda-approves-new-treatment-adults-relapsed-follicular-lymphoma

  • ShadyGuy
    ShadyGuy CSN Member Posts: 943
    #7

    I agree with Po about art vs science. That is why I insist on second and third opinions. This is particularly true about scan results. I have a relative whose brother is a radiologist. I asked him about reading scans and he compared it to seeing patterns in the clouds. One person may see a sailing ship while another looking at the same clouds may see a dog. Add to that the chaotic way scans are read. There are pools of radiologists working from home computers of questionable resolution and in hurry to grab the next scan job. Much of the content of their reading is cut and paste. Some of these “radiologists” are working in India, Philippines, etc. so language is sometimes an issue. The cancer society recommends always having your scans read by the same radiologist. Good luck with that! I have found it impossible in the Northern Virginia area. Hopefully AI will help standardize the reading of scan results.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 CSN Member Posts: 3,829
    #8
    https://csn.cancer.org/discussion/comment/1721700#Comment_1721700

    Shady, Northern Virginnie has been crap since General Lee retired

  • ShadyGuy
    ShadyGuy CSN Member Posts: 943
    #9

    Your opinion is yours. But the stated situation is universal. It's true most everywhere and not just Virginia. It's true in multiple industries. I recently discovered my accountant has been processing our taxes in India. I am, by the way, related to Lee who did not retire but was thrown out. He lost. If you want to see crap look at South Carolina.

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