Hello

Hello, I have just registered with this group. Have recently found out that I have follicular lymphoma and am waiting for bone biopsy results for staging. Seems to be taking a long time as the piece of bone was taken from my pelvis on 11th. March. The lymphoma was identified from a lymph node in my neck (only found on high dose CT scan) but has come back as low grade. Because I have lytic lesions down my spine and in my pelvis, the specialists think it must be a higher grade. Anyone on here experienced this?

  • Hi Ardybyrne,

    Welcome to the forum. I have been on here a couple of weeks whilst awaiting diagnosis. Maybe if you edit the post title and add 'lymphoma' more people with this disgnosis will respond.

    Also there is a search option so you can search for follicular lymphona and it will bring previous threads on this subject.

    If I may ask, what where your initial symptoms that led doctors to do a CT scan? I was already screened for breast cancer and bowel cancer and now the doctors are looking into lymphoma. They are baffled as all my bloods are always normal. No CT scan so far though despite me asking for it.

    I have seen a few posts where people waited couple of weeks for biopsy results. Have you tried chasing?

    All the best to you and I hope the biopsy comes back negative. 

  • Hi Anita83,

    thanks for your reply, my initial symptoms were: sudden onset of very high temperature with shivering/shaking. These episodes brought on acute lumbar pain which made it difficult to stand. My daughter took me to our local hospital and my x-ray was abnormal, they thought spontaneous fracture of vertebrae and were suspecting myeloma which is cancer of the bone marrow. The bone marrow biopsy came back negative so they did a whole body CT which shows the lytic lesions in my spine and pelvis. Since then I have had  MRI scan, biopsy of neck lymph node and then the biopsy of one of the lesions in my pelvis. The doctors know that it is lymphoma but so far have only identifies low grade and they know that because of the damage the grade must be higher. At one point it was thought that I had bone metastasis from an unknown primary but this has now been ruled out thankfully. All my blood tests so far have been totally normal. Quite a puzzle!

    I hope you get a CT scan and perhaps a bone marrow biopsy soon.

    Best wishes.

  • Thank you for your reply.

    I hope your pain isn't too bad and you get to start the treatment soon.

    Do post an update once you've had your biopsy results. Fingers crossed you won't have to wait much longer.

    I have had abdominal pain (ultrasound didn't show anything) and swollen lymph nodes for 3 months now. As a bonus I then got an itchy scalp and a back pain. All the bloods are coming back normal so hoping CT scan is next but who knows. 

    All the best to you.

  • PET scans are the best. Even CT with contrast & MRI scans miss some things 

  • I have had a kidney removed as there was a tumor in the Ureta. 6 months on I have cancerous cells in my bladder. I am due to go in and have a bladder scrape and they will take a biopsy. However as this is not my first rodeo I asked for and was refused a PET scan. As you can imagine I am pretty *** at them.  I am certain those little buggers  have legged it elsewhere by now...