Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Primary CNS Lymphoma

Ewanovic
Posted by

Hello all. Any advice appreciated. My Mum is 76, she has a Primary CNS Lymphoma in her brain (doctors say they are 90% sure).

Trying to decide should we put her through a biopsy to confirm.

It seems to be difficult for them to tell us what type of Lymphoma she has without a biopsy. But it's risky at her age. 

It's a tough decision for my Dad.

He doesnt want her to suffer but I've done a lot of research and reading - and it says its really important to be properly diagnosed before starting any treatment, you need to be sure.

We're leaning towards she has to go for it if she can. If its high grade we need to move quickly.

Thoughts or comments welcome, thank you ! 

latchbrook
Posted by

Hi and welcome to the online community

I'm sorry to hear that your mum's doctors think that she has a primary CNS lymphoma in her brain.

I did not have this type of cancer so don't have any experience with it but I noticed that your post hadn't had any responses. You may already have read this information that Macmillan have produced about this type of cancer but clicking here will take you to it.

You are right that it's important for treatment that the doctors know exactly what they are dealing with. Have they said that they need to do a biopsy? If so, I'm sure they wouldn't suggest it if they thought it was risky, although they do have to warn you about the associated risks.

I'm going to tag my friend into my reply to you as he is the Community Champion for the lymphoma groups and may be able to give you some further information and help.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Thehighlander
Posted by

Hi , I see my friend tagged me into your post. I am so sorry to hear about your mum and the issues surrounding a clear diagnosis.

This problem with blood cancers like Lymphoma is only clear way to diagnosed Lymphoma is by biopsy. You would think a blood cancer could be found in the blood but it’s far from the case.

With out a biopsy here Team would be taking a shoot in the dark.

There are over 80 types of Lymphoma and a clear type needs to be found to identify the very best treatment route.

Blood cancers are not like solid tumour cancers as on the whole it can not be ‘cut out’ think a blocked blood vessels or lymph node and chemo is used to break the block down, but also to go through body looking for other areas that may not shower it’s face....... some cases also need radiotherapy to do a quick hit to reduce swelling.

On the whole Lymphoma can be treated well, yes hard work at times but do-able, but where your mum’s presentation is it brings more challenges.

We have a number of folks in our General Non Hodgkin's Lymphoma forum who have PCNSL so why not join the group and put up a post just as you have done on this forum.

It would be helpful if you try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names like my one

I will keep an eye open for you.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Ewanovic
Posted by

Thank you for your reply and for all the informatoon. It helps. My brothers and Dad are meeting with Mum's doctors today to discuss a biopsy and possible treatment options. I'll know more after this. Still hoping and praying ! Thank you.