Brain Tumour related, Or Secondary problem?

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I was diagnosed with a grade 3 right temporal lobe Oligodendroglioma on June 4th 2021. I had surgery, which removed 70% of the tumour. I then had a full treatment of radiotherapy I couldn't receive chemo as I had a elevated ALT levels from my liver. So since December 2021, I haven't received any cancer treatment. All of my MRIs as of June, have come back positive, so far - "stable with no signs of progression."

For the past few months I've had a pain in my back and neck, from a google search it says the muscle is the "Rhomboid muscle", Its in the upper back between the shoulder bade and spine. I had a similar pain when I had my Liver problem the first time - which was confirmed that I had fatty liver spots by ultrasound. It eventually went away, and still not sure how. So since the pain has came back, i've now lost my appetite - not completely, but struggling with dinner. The food is going straight through me and my urine is quite dark, and i'm starting to notice weight loss. 

They have now performed stool and urine samples which have come back fine. They then took my bloods, checking for kidney function, liver, vitamin d, B vitamin levels, etc. I got the results today, which came back all fine "no action needed"

During this time I've noticed my breathing has become an issue as well. Very shallow, particularly when in bed. I also get out of breathe from just talking. Its like I can take oxygen in, but I can't exhale for vey long, It's like I run out of breathe. And I just generally feel fatigued and tired. Also, very bad insomnia for the last few months. i'm feeling very cold a lot recently, particularly in my hands. Some of the breathing issues I think looking back, I may have had before I was diagnosed.

Meds - Keppra 1500mg a day

            Lansoprazole 30mg a day


I'm at a bit of a loss. Could this be a sign the cancer has spread?

Sorry for the ramble, and I hope it makes a bit of sense?

Any help or advise would be most welcome,

Thank you,


  • HI

    sorry to hear you have so much going on.  I've always gone on the premise "if its worrying you, ask the doctor". I am no expert here but if it was me I'd speak to the oncologist and explain everything to them. The human body is a complex thing and your own medical team are the ones best placed to give you the right answer. Talking to them also takes away the fear of the unknown. Not knowing all the facts is a thousand times scarier than facing the actual facts.

    This is a safe and supportive space so no doubt someone else will be along with their words of wisdom shortly. Please reach out here anytime as there is always someone about to listen who gets it. You're not alone. We're here for you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    for now I'm sending you a huge virtual hug and lots of positive energy. Stay strong. One step at a time here.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • I've been complaining about back pain too strangely, I have the same tumour (they think it's the one you state or a diffuse Astrocytoma, stage 2.

    My back pain started off just after I was discharged from hospital back in April when I was first diagnose with a brain tumour, started off in my lower back but because I had been led in a hospital bed for 4 days I just put it down to gravity taking it's toll on my organs.

    Since then the pain has gotten worse and seems to have moved up my spine and the area you state you have yours in.

    I'm in that much pain it's just taken me 15 mins to climb out of bed this morning.

    I'm on 500mg Keppra twice daily.

    Hope you get sorted.