We Talk Brain Tumours

After a lot of questions and many phone calls I have managed to get some answers. My sister, Lyn has two tumours one of 2cm and the other 2.5cm. The name of the tumour is Glioblastoma I don't know what stage it is at but after reading whay Gayle has gone through I feel sick at the thought of what might happen to Lyn. I had gone from tears to anger, now I'm back to tears again. I wish I knew what to expect. HELP! please  

Terice I am sorry.  Your question is very difficult as everyone is very individual and it is very hard to suggest what your sister may or may not experience.  In time you will come to accept that this is the way it is, not something any of us have liked as we all have wanted the answers to questions that are still too difficult for the medics to answer.  This is where this forum steps in.  The people here have such a wealth of experience between us - this means that if your sister begins to experience specific things then there will, no doubt, be someone or a few people who can express their own experience  which you will either be able to relate to or help you understand that you are not totally alone that there are others out there that understand your concerns - probably far better than any doctor or nurse.   Nothing with this illness is straightforward and there are a lot of unknowns but you will find the strength, as we all have had to, to get by and find the answers to your many questions as they emerge.

Keep posting - Mandy

Terice - the majority, but not all, of us on here are dealing with gliobastoma or GBM as it is commonly called. I don't think GBM ever has a grading other than IV. But everybody has had really different exeperiences of both treatment and how the illness has manifested itself in individuals. For example, so far, my mum ahsn't had a single seisure but others have had loads. Some people have "lasted" past what was expected, others haven't. How people have reacted to their treatments seems to vary widely too. It really is, just the most unpredictable illness. But it is also teh most unfair, horrible disease, but there's enough of us on here that you should get answers to any questions, and a wealth of experience. I've now been posting on ths forum (although I'm not a really reagular poster) for nearly 18 months and feel that it is this forum that has answered all my questions / prepared me for what is to come / helped sort out disability allowances / hospices / district nurses etc far more than my mums doctors have done.  It's funny but I feel a bit like an old-timer, but I so remember those early days when utter disbelief, grief , anger and confusion took over every waking moment. 

Cross posted with Mandy - at least lots of the things taht we said were similar!!

Hi Mandy

Thankyou for answering, it helps just knowing I'm not alone. With me here in Belgium and my whole family in England, I feel so isolated. My brother-in-law (God bless him) is feeding me information bit by bit, to him i've always been the little sister, so I think he is trying to protect me. To me not knowing is worse than being told that it's hopeless, I love my sister so much and am glad to say that she's a fighter. I talked to her on the phone two days ago and she had problems talking, one thing she said clearly though was that she was going to beat this thing and "Kick its butt back to where it came from."  It gives me hope to know she is not giving in

Thankyou again

Terice      

Thankyou   Sallye

It's good to be abel to talk about this instead of botteling it all up

Hi - new here.

I posted separately asking for advice on Manchester consultants and wondered if I could ask another question ... I gather this is the place.

My father has a recently diagnosed, high-grade glioma which is being operated on on Friday.  We have seen two consultants (one private, one NHS) and they have been distinctly unforthcoming with a prognosis based on MR and CT scans.  I just wondered if this is normal, and whether it's normally post operation that the oncologist might be more forthcoming.

I haven't pushed things as I didn't want to upset my parents in the consultations, and wonder if perhaps keeping the patient and family positive at this early stage is part of the strategy, even if it means being sparing with the facts.  I know from my own research that the long-term prognosis is not good, but am keeping this to myself for now.

Any thoughts or feedback gratefully received.

Jules

Hi Jules,

Sorry you have the need to be here and having to ask these questions, but hopefully we will be able to answer some if not all of them.  Has your father had a biopsy to establish the grade, or is the diagnosis from the scan? I presume that with him having his operation on Friday they will not yet have carried out any invasive process. They can often see from the MRI scan whether tumours are high or low grade, aggressive or non aggresive, but need to analyse a sample to actually determine the grade 1 to 4. Until they have established that it is very difficult to give a prognosis which then is only a guesstimate. They should be more forthcoming with information then and suggest a course of treatment, but list all your questions and respectfully demand answers. As regard sparing the family the facts it may be wise to await the operation and prognosis. I'm sorry I can't be of much help to you, maybe someone else on the thread will be along to help.

The very best wishes to Dad, you and the family. Martyn.

Thank you for your continuing kind thoughts, I assure you they are recipricated.

Helen, Y & Y.  What lovely words, thank you.

Mandy, we think of you often and do hope all is going well for Katie.

Robin, as always Jan, you and the children are never far from our thoughts.

To each and everyone of you we send our love and best wishes.  Doreen and me. XXXX

Hi Jules

I am  so sorry to hear about your father. We work quite closely with the healthcare practitioners in our work at brainstrust; what I know is that they will answer the questions they are asked and they tend to be guided by the patient. That's all very well, but what happens if you don't know what the questions are? It might be that they are taking this one step at a time and when your father has recovered from the surgery then they will be more forthcoming. They would want to wait until they have the biopsy results anyway as sometimes scans are not accurate (neither are biopsies!). THere should be a follow up meeting following the surgery when the next steps are planned. They might say more then but if they are not asked directly about prognosis it probably won't be addressed. I hope this helps. You might find it easier to make a separate appointment. You're like me ; you like to look the tiger in the eye!  Am thinking of you Helen x