Sorry for this long-winded post, but it’s my first.
I’m 37 years old with 2 young children (7 & 3) and had a 25mm malignant tumour diagnosed on 5th February 2026. The tumour is located on my left frontal lobe, on the outside of the brain above my left eye.
Everything moved so fast - my first symptom was a mild headache on the evening of 1st Feb, that progressively got worse over the following 36 hours, until it was excruciating. I went to my GP on 3rd Feb, who believed it may be a cluster migraine (which I agreed with, even though I don’t suffer with migraines, it of course made the most sense!) Thankfully, he also booked me in for some bloods on 4th Feb, just to rule anything else out. I had my bloods taken at around 11:30 on the Wednesday morning, & a doctor from the surgery called me shortly before 6pm to advise me to go into AMU at my local hospital, as my CRP (inflammatory marker) was 124 (normal is <5). My sister took me in, & at this stage I’m thinking they must be worried about meningitis or some other severe infection. I got admitted at about 2am on 5th Feb, & had an urgent CT done at around 4am. The doctor informed me in the morning that there was an abnormality on the scan, & they would need to do an MRI for a more accurate diagnosis. I had the MRI at around 6pm, & they let my Mum come in for me to receive the results that night…. It appears to be a malignant tumour.
They started me on dexamethasone that night, which had relieved the pain by the morning, thankfully. I then had a CT of my abdomen, chest & pelvis on the Friday (6th) morning to check for any other masses, but that was clear, so they discharged me & referred me to be followed up with the neurosurgeons at a bigger hospital. After they discussed my case they said they believe the tumour is a type of lymphoma due to the characteristics, & the instant response to the steroids. A plan was made to do a biopsy on 24th February, but they needed to do another CT scan first as steroids can shrink lymphomas drastically, and there may not have been enough left to biopsy. Thankfully, despite the tumour shrinking by about a third, there was enough to go ahead with the surgery on 24th. I am now recovering at home, and waiting for the biopsy results, which I should get w/c 9th March.
Has anyone else had a primary lymphoma in the brain? What was your treatment plan? I know it will likely be chemotherapy, & possibly radiotherapy too, but until the biopsy results are back I don’t know for definite that it is a lymphoma. I’m in limbo at the moment, & struggling with the idea of my children seeing me poorly, & possibly having to grow up without me. My 3-year-old son has been struggling to see me with a dressing on my eyebrow & a black eye, & I just can’t prepare him for anything because he’s too young to understand. My 7-year-old daughter knows I have a poorly head that I had to have an operation on, & that I will need to have some strong medicine to make it better & that I may look different because of it. She understands as much as a 7-year-old can, but it’s so difficult that I can’t protect her from any of it.
I was in such shock when I got diagnosed that I just had the mindset of ‘oh well, they’ll remove it & I’ll have treatment, then I’ll be fine.’ But of course, it’s now been 3 weeks since diagnosis so things are starting to sink in, & I’m now aware that treatment isn’t always successful, & I may not recover, & that terrifies me.
Hi Jen24 and a warm welcome to this little corner of the Community and sorry to hear about your ongoing diagnosis
I am Mike and I help out around our various Lymphoma groups……. I don’t normally post in this group but I do keep an eye open for anyone diagnosed with CNS Lymphoma……. Central Nervous System (CNS) Lymphoma is one of the 60 types and sub-types of Lymphoma
I don’t have CNS Lymphoma but I have been on my Lymphoma journey for over 25 years first diagnosed way back in 1999 at 44…… with 2 rare, hard to treat T-Cell NHLs so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Over the past 8 years volunteering on this Community but also with Lymphoma Action I have talked with many people with CNS Lymphoma who have been successfully treated.
There have been a few over the past year posted in this group but also in our dedicated General Non Hodgkin's Lymphoma group.
Always around to chat over in the General Non Hodgkin's Lymphoma group.
Mike (Thehighlander)
It always seems impossible until its done - Nelson Mandela
Hi Jen my journey is rather complicated but you can See my story ……. but make a strong cup of Coffee ;)
My first type of Lymphoma is a rare, slow growing, incurable Low-Grade Skin NHL (CTCL)….. it looked like I had very bad Psoriasis….. at one point my body was 70% covered in tumours….
People kept asking me if I had skin cancer but this was far from the reality…… Lymphoma is a mystery at times….. and like you ended up in this group CNS Lymphoma is very different in how it’s treated….. you basically can’t cut out Lymphoma.
Lymphoma cells are formed in the bone marrow/immune system and travel around the body…… a few get together and decide to have a party….. then big gun treatments - mostly chemo and other drugs are sent in to break up the party and chase the cells out of the body…… a very simple description ;)
Back in 1999 the then median survival for my CTCL was set at 3-5 years but the developments were treatment turned that on its head.
As a family we treated it as a chronic health condition that could be treated when required…… my consultant said that unlike say diabetes you will get treatment when needed….. diabetes is a life long condition, you are on treatment every day and you have to monitor yourself every day…… and if things go wrong they can go seriously wrong.
Then in late 2013 a second, also rare, very aggressive type PTCL appeared triggering 2 years full on treatment (800hrs chemo, 45 radiotherapy zaps and 2 Allo SCTs)…….
Our 2 daughters were 14 and 18 back in 1999……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters 
But I am over 10 years out from my last treatment, I turned 70 last Nov and I doing great.
((hugs))
Mike (Thehighlander)
It always seems impossible until its done - Nelson Mandela
Just to give you some final information.
Getting clear, up to date information is very important so you may want to check out the Lymphoma Action website.
Lymphoma Action is the UKs main Lymphoma charity with their website having lots of good reliable, accurate information, videos..... basically all things Lymphoma....... pre, during and post treatment.
All the links I use are taken directly from their website and I have volunteered with them about as long as I have with Macmillan……
They run various Support Platforms…
Their Closed FB group alone has over 6300 members and unfortunately you would most likely bump into me on there also ;)…….. and there are a good number of people who have had and been through treatment for CNS
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……
They also have a great Buddy Service where you can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
((hugs))
Mike (Thehighlander)
It always seems impossible until its done - Nelson Mandela
