Pet scan

scrossan
scrossan Member Posts: 2
edited April 2019 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi all, I'm new here and am wondering if I should seek a second opinion out. I just got back my pet scan results and my dr said we need a biopsy done but when I went in for the biopsy the radiologist decidied to do a ultra sound instead and said you dont need a biopsy you are fine. My pet scan came back as the following: Impression= Consider low grade lynphoma vs non-specific inflammatory changes 

Pet Findings: Mildly FDG avid lesions noted within level 2 and 3 bilateral cervical lymph nodes with a SUV max of 2.5 

Mildly and diffusely increased FDG uptake within the marrow spaces.

 For the last 6 months I have felt off, night sweats, fatigue and itchy fingers. I have always been super active and healthy and now I barely make it to noon without a nap. I know my body and that something is off but now my Dr said he is just gonna treat me for aneamia and leave it alone. Considering getting second opinion. 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2
    New Doc

    scrossan,

    WHO ordered the PET scan ?   Your post is a little hard to make sense of.   What sort of doctor ordered the biopsy ?  It is very odd for a different doctor to countermand a proceedure like a biopsy, at least without consultation and agreement. 

    Night sweats, severe fatigue, and anemia are indicitive of lymphoma.   I would get a new doctor immediately, and request that the biopsy move forward.  In the scheme of oncology medical proceedures, most biopsies are relatively easy and inexpensive -- note that I said "relatively."   

  • scrossan
    scrossan Member Posts: 2
    edited April 2019 #3
    Max Former Hodgkins Stage 3 said:

    New Doc

    scrossan,

    WHO ordered the PET scan ?   Your post is a little hard to make sense of.   What sort of doctor ordered the biopsy ?  It is very odd for a different doctor to countermand a proceedure like a biopsy, at least without consultation and agreement. 

    Night sweats, severe fatigue, and anemia are indicitive of lymphoma.   I would get a new doctor immediately, and request that the biopsy move forward.  In the scheme of oncology medical proceedures, most biopsies are relatively easy and inexpensive -- note that I said "relatively."   

    New Doc

    I saw a oncologist/ hematologist at UCLA and he ordered the PET and Biopsy, the PET scan was done first which came back as Mildly FDG lesions within level 2 and 3 bilateral cervical lymph nodes with SUV max of 2.5 also noted in the abdomen/Pelvis was Mildly and diffusely increased FDG uptake within the marrow space. When my oncologist/hematologist called with Pet Scan he said looks like low grade lymphoma but we need the Biopsy done. A week later when I went in for the Biopsy the Radiologist came into the room and said you dont need the proceedure you are fine, I asked if he consulted my oncologist/hematologist Dr and he said no, he proceeded with I'll do a ultra sound if it makes you feel better but I think its a waste of time, after ultra sound he said theres nothing to biopsy go home and I'll be in touch with your Dr. I talked to my Dr that night and he said he the radiologist felt there was nothing there, so lets treat the anemia and see what happens, I asked if the lesions went away or shrunk and he said no but he was upholding the radiologist decision. I have continued to have drenching night sweats and fatigue and all my other blood test have shown NO INFECTION, or INFLAMATION, besides the SED rate that continues to climb as well as my monocytes and lymphocytes . I put a call into City of Hope and they are scheduling a appoiintment for me. Not sure what to think at this point. 

  • po18guy
    po18guy Member Posts: 1,505 Member
    #4
    Second opinions save lives

    It may or may not be cancer. Many other conditions mimic cancer, just as cancer mimics many other conditions. Surprising that a PET was done first. They are usually done after a CT/biopsy confirm the presence of a malignancy. PETs are not cancer detectors, although they are quite useful after cancer has been diagnosed. Many things cause PETs to light up, from simpe injury, to various types of healing, infection, chronic inflammation issues, autoimmune conditions etc .etc. etc.

    You are doing the right thing by getting a second opinion.

  • Evarista
    Evarista Member Posts: 336 Member
    #5
    It's frustrating

    I have been down this particular rabbit hole a couple of times in the last two years (post diagnosis and treatment for DLBCL):  something shows up on a PET scan; referred for biopsy; surgeon/radiologist/radiation oncologist cannot visulize anything to biopsy.  Signal is gone on repeat PET scan 2 - 3 months later. It happens and it can be incredibly anxiety provoking and frustrating.  But it's important to remember that FDG uptake on a PET scan does not measure (or diagnose) "cancer".  It measures cellular metabolic activity:  inflammation, wound healing, scarring, cancer.  Any of these can give a signal, which may or may not be suspicious of malignant activity.  

    That said, your concern is understandable, given your other symptoms. You need to get clear information from your oncologist.  Second opinion sounds like a good idea.  In the meantime, follow-up bloodwork might shed some light on causes for anemia.  Best of luck to you.

  • just4meonly47
    just4meonly47 Member Posts: 3
    edited June 2019 #6
    Ignored diagno

    My heart goes out to you & others on here who are still waitI gotta on an accurate diagnosis & treatment. I had unidentifiable syptoms for 2 years BEFORE my actual diagnosis of Diffuse Large B Cell Non Hodgkins Lympoma. I am NOT in any way suggesting this could be you. Because  I had had a heart attack 3 years ago  & received 3 stents.I kept thinking my fatigue and slow down to everything was due to my heart. My cardiologist scheduled a Heart catch in April of this year. Everything there was fine. Still the constant fatigue. Two years ago I became ill with the Noro Virus, losing fluids on both ends & unable to get it stopped. So my thinking, was here we go again. I became more & more tired, sleeping more, as in 20 hours straight thru. I normall thrive on 6-8. My daughters, bless them, insisted I go the local ER. That was March 17. They kept me in Observation & my PCP decided to admit for further testing. March 19 I was sent for an Upper GI & Colonoscopy & subsuequent diagnosis. What a mind and life altering dump trunk load of info to sort thru. I am a healthy 72 year old female with 4 daughter, two sons, 4 grandchildren & one great grandson. Obvious reasons, alone, to fight this in every way possible. 

    it concerns me that your doctor may be wasting valuable time, your time, on his Anemia diagnosis. ALL my symptoms pointed to that as well. Fortunatly, my PCP took it a step further, to be on the safe side and had me admitted that day. He made contacts with a very intelligent, caring, compassionate forward thinking oncologist. 

    This Thrusday I am going in for my 3rd round of Chemo. Within the very first round of chemo, the large tumor I had on my transverse colon was shrunk in half!!!! That, for me, was extremely encouraging. I urge you, because I care, tomget a different opinion. I didn’t Ned to because I have PCP I do. Not all patients, in your current situation, are as fortunate. If you have to travel to another town or city....do so. This is a very aggressive form of cancer. But, that also makes it far more responsible naive to treatment. 

    Please stay in contact as my prayers are with you & will interested in how things develop for you. 

    DO NOT GIVE UP, EVER!

  • just4meonly47
    just4meonly47 Member Posts: 3
    #7
    Typos

    please overlook the typos, my fingers don’t always keep up with my mind, lol

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