False positive PET
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
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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.
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Sandy, I sent you a PM earlier today.
Max
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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.
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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.
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Shady, Northern Virginnie has been crap since General Lee retired
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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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ShadyGuy, hello.
Sorry to review this older thread but I'm curious about second and third opinions. Please forgive me because this is all new to me but when you want a second opinion do you go to a totally different place or are you asking a second doctor or radiologist at the same place? And, if a different place, do the different health care providers share the scans/images without too much trouble or is it kind of a complicated thing to arrange or ask for?
Would also be interested in anything in general you think would be important to know when asking for second opinions.
Thank you.
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mossback99
I had a scan December 2024 and PET said Deauville score 5 so Lymphoma present. I had a biopsy in February no sign of cancer. Another PET in March still the same Deauville score 5 so another biopsy in March. They found no cancer. Next scan is 6/29/2025. I feel great. This is my third scan in 9 months and different radiologist all seeing the same thing. I had a CT last week unrelated to the lymphoma and they noted the enlarged lymph nodes. My oncologist says the scans show no growth which is good. I am trying to be patient and positive but it does way on me. I am ready for a definite diagnosis. Then we can decide where to go from there.
Note I was first diagnosed in 2017. Relapsed in 2020 and now well who knows. I hope you find the answers you are looking for. My suggestion is find an oncologist who you trust and can talk with and if you are not comfortable get second opinions or even change doctors.
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Hi Sandy Ray,
First and foremost I hope you are indeed healthy and cancer free. And thank you for the advice.
It's kind of incredible that your different tests are showing such different results. Of the two, I'd say it's very encouraging that the biopsy shows no cancer since they are looking at real tissue. But I know nothing… Regarding your lymph nodes, did you or do have any visible lumps or a mass somewhere? Like what was your first clue or symptom that even prompted you to be checked?
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Mossback
the way I got my multiple opinions was by going to different places. I was diagnosed by my local onc/hematologist and started treatment. I was confused so I scheduled MD Anderson and went there for a week and later on also went to Duke. Their diagnoses were not all the same but they all agreed I had FNHL lymphoma. Mine was different than the common variety and a combination of nodal and extra nodal. There were no palpable nodes. I had a hard relapse and chemo again after 6 years. I figure I will either die with it or from it cause it will, barring some new treatment that renders it no longer incurable, always be there. It is still detectable but indolent for now. Enjoy life!
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Mossback,
Ok not sure if your question about what prompted me was in 2017 initial diagnosis or recent scans. So here is an answer for both.
Initial Diagnosis
In 2017 I had noticed some shortness of breath and a sudden loss of appetite. I dropped 35 pounds in a month. Upon further inspection I noticed a very large lump under my armpit. No pain and no other symptoms or so I thought. I made appointment with family Doctor. He did bloodwork. He also asked if I had night sweats. I did and they were soaking the bed. I did not put two and two together. He did! I saw oncologist had scans and biopsy and that started the initial finding.
In December of 2019 a CT scan and then PET showed it had returned. The first go round just Chemo in 2019/2020 I had a stem cell transplant.
In December of 2024 it showed again on PET scan. These were just standard follow up scans no other signs or symptoms. To date still no signs or symptoms other than PET scans. At first the doctor said false biopsy that they must be having a hard time finding the affected lymph nodes. After 2 biopsy’s and 8 lymph nodes removed he is wondering. He says cancer usually shows some change and mine for now has been unchanged. So the end of this month we have another PET and see where we go from there.
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ShadyGuy, understood and thank you. Enjoy life- you are absolutely correct.
Sandy Ray, thanks for the breakdown. In 2017, when this all first started for you, after the diagnosis, how long was it before you started treatments? And how long after that until the lump under your armpit went away?
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I found the lump I think in late January of 2017. The biopsy took a while for Pathologist to identify. Local pathologist sent to next largest city and then it got sent to National Institutes of Health where Elaine Jaffe gave diagnosis. Hodgkins NLPHL and Non-Hodgkins T cell rich Diffuse large B cel lymphoma. Many think the Hodgkins sometimes transforms to the Non Hodgkins. My local oncologist had never treated anyone with both types present so he sought advice from Vanderbilt University Hospital. I got a second opinion on course of treatment from local cancer center. I also flew to Houston and MD Anderson for a third opinion. The consensus was that RCHOP would be recommended course of action. I started RCHOP on 3/21/2017. 6 rounds of RCHOP. The large lump shrunk some but still some scar tissue from biopsy and loose skin so hard to say the lump is completely gone. I do not really notice it so much. My spleen was enlarged and has shrunk some but pretty much stayed enlarged. My doctor could feel where the lump was and after the first or second treatment he said it was melting away. The relapse in 2019 was caught early but my oncologist recommended I go to MD Anderson. There I received a stem cell transplant. They used my own stem cells. So that worked 4 1/2 years before a PET scan showed up.
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I know it is scary at first. I still let my mind run sometimes. All in all there have been some rough days. The days near the end of treatment like after treatment 4 as example I was weak. Not really hurting just felt terrible. Those days I just tried to put one foot in front of the other and do what I needed to do. After treatments end slowly got back to pretty close to my old self. The stem cell transplant was much the same. It was maybe a little more draining and I was much weaker at the end of it all. However I still slowly got back to my old self. They have lots of options to fight Large B cell with and have come up with a lot of new ones since I was first diagnosed. My Hodgkins is indolent and considered slow growing uncurable. That is based on their thoughts today. That could change. Many people have gone into remission for a decade or longer. Managing the symptoms from the chemo during treatments was my main objective. It was really the only thing I had control over. I couldn’t make a difference of whether the treatment would work or not. That was all in Gods hands. I tried to control what I could and wait and see on the other. I have never really had any health issues before so I was definitely blindsided when they said I had cancer. There are multitudes of people who have things far worse. Cancer is just a scary word. My life other than the few months I had treatment has been pretty much the same. I did retire early but I was blessed to be able to. Let me know if I can help as you navigate this new part of your life.
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I can answer the part about sharing images and scans. It's pretty universal that scans are shared if requested. You can either ask your present oncologists to forward them to the new group or the new group can request them. If the latter is the case, they will likely have you sign a short form authorizing their release. I have been through this myself, starting treatment in one state and finishing it in another. and with today's technology, they can be shared electronically, rather than by mail.
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Tom, that's all good to know and makes sense. Thank you.
Sandy Ray, I really appreciate you taking the time to share all that and offer your support. I am scared for sure- but also hopeful. Like you said, it's in God's hands. May I ask what your approximate age is?
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Understood, thank you.
So when will you have a definite diagnosis? After your PET scan coming up at the end of this month? And what kind of Deauville score do we want to see on these things? Zero?
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