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Hi, I hope this is the right place to post this but please point me in the right direction if not.
In early June this year I had a biopsy on a lesion in the visual pathway of my brain.
The results were inconclusive after 3 weeks, but the surgeon assured me that it was not cancerous or a tumour but they didn't know what it was. (Scarring was ruled out as I had a scan 9 months previous which was clear).
Had a follow up with a senior consultant at the end of July who said actually they hadn't ruled out a tumour but still didn't know what it was and advised a follow up MRI in November with a visual field test last Friday.
The visual field test was abnormal and I have to go back in 5 weeks to discuss.
I am aware of a vision problem and that it has got much worse over the last 4 weeks, along with the initial pain increasing.
I really am very level headed but at the moment feel completely lost as I feel like I have no info but at the same time want to trust my doctors.
Has anyone experienced anything at all similar to this? Do the time frames seem usual?
Thanks in advance to anyone who can reply x
Please get a second opinion from different hospital. The hospital where biopsy was done should do this if you ask.
Why are they not sending it for molecular markers or methylation tests?
UCLH in London is a good start.
Hi, thanks for replying. They did an initial biopsy in June and now I just dont know. I honestly dont know if I should push for the next MRI to be brought forward or whether i will be deemed a neurotic idiot!
I feel in my gut that i need to request more tests sooner, but just wanted to know anyones opinion who might have suffered something similar.
My family want me to request a second opinion also so I will look into this today.
I just edited my post. Please read again
My sons biopsy was inconclusive at first so they sent it for second opinion without us having to ask the second hospital also said inconclusive but they wanted further tests that weren't done at hospital that done the operation / biopsy.
They sent the biopsy slides to UCLH and it turned out to be GBM.
I think they said it was just transforming.
DON'T think you are being neurotic it's your life and if it turns out to be (LET'S HOPE NOT) high grade tumour you want hospital to get things moving now!
Thanks so much, I definitely feel less silly about questioning what is being done at the moment and I will be speaking to them later today.
Bethjade if you don't ask you don't get x
This must be a worrying time for you, which is certainly not going to be made any easier by being told that you have to wait another several weeks before they will discuss the results with you.
It might be that they want to wait another few weeks to see if there is any 'growth' or change on the lesion. If they do it sooner it might be just too soon for any changes to be apparent. If this is the case it would have been nice to have this properly explained, so you're not worrying unduly about what appears to be a delay.
I was initially misdiagnosed with a small blood clot which has turned out to be a low grade tumour. That was over 5 years ago but I was unhappy with how the first hospital originally dealt with the diagnosis and the lack of recommendations when I was eventually told it was a tumour.
I asked my GP how I could get a second opinion,. She said that if it was her she would go the National Hospital for Neurology and Neurosurgery at Queens Square, London. Its part of UCL which Madesap has also recommended. However, unless you are prepared to pay to go private then you don't normally get to choose your doctor - it will be referred to the one with the most appropriate skills for your particular symptoms.
Don't worry about what your original team think or that you are being 'over fussy'. All doctors accept that some patients want a second opinion and that its not a personal reflection on them. They give second opinions on other patients who are referred to them - its how the system works.
The area of my tumour effects my vision as its close to what my surgeon calls the 'optical pathways' . I appreciate that I'm further down the road in that I've had a diagnosis for several years but please get in touch if you think I can be of any help or have any questions.
Thank you so much, this is very helpful.
Initially, I was fine with waiting until November for the followup scan, as I realise that any earlier might not have been conclusive, but after experiencing a noticeable change in my vision and the visual field test confirming it, I just feel that I would benefit from at least a discussion around it. As you said, its the lack of information that is causing most worry at the moment really.
I haven't had the opportunity to discuss the newer symptoms and I'm basically frustrated. I have booked an appointment with my GP, who is incredibly supportive so I'm hoping that she can help in some of it. Even if none of the appointments are brought forward, she might be able to explain a little more in detail and pass my concerns to the consultant.
My lesion is also in the visual pathway, and from the initial MRI right through up until the final day of the biopsy results I was told that it was a grade 2 Astrocytoma (excuse spelling errors!), but then they changed their mind, and now seem to be reverting back to 'it might still be a tumour (the consultants actual words), so, all in all, I haven't a clue what to think.
When I thought I was dealing with a tumour, I was actually very calm, but I can't stand the indifference so will 100% request a second opinion if my GP is not able to help me any further. Thanks so much for your reply, between you and Madesap you have really made me feel much better about questioning the steps being taken.
So I went to my doctor this morning, and she was fantastic. She had already contacted relevant departments to say that she wanted the appointments bringing forward and based on what I was telling her agreed that a repeat MRI/CT was required in the next few weeks - rather than November.
She explained things far better than any consultant has previously and left feeling a whole lot better. In fact, the only time she told me off was for delaying asking her, so I'm very glad I went and thank you so much to you both who made me feel less of an idiot and spurred me on to speak to her.
Thank you x
Hello! My situation is VERY similar to yours! A lesion was found in my occipital lobe late July and I was told it was a tumor. I had an open brain biopsy (after lots of other testing) the end of Sept. My results were also inconclusive and I was told it is not a tumor but a lesion. It tested negative for everything but did show "abnormal cells". My nuerosurgeon has referred me to a nuerologist who I will see next week. She also did an MRI 2 weeks ago and will again in 2 more weeks. She also presented my case to a team of docs from different specialties and has consulted with the Mayo clinic. I am just curious to see what you learn about your lesion. Have you found out any info? Also...how long was your biopsy recovery?
Hope all is well!
Also...I did a field of vision prior to all of this because vision change was my first and only symptom. It showed that I lost vision of the lower right quadrant of each eye. I had a follow up one done last week and it actually showed progress which is weird
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