Brain tumours

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

Second opinion

Hopekindness100
Posted by

Good Morning to anyone reading this

My darling mum has this week been diagnosed with a malignant brain tumour (age 67) and we are all utterly devastated. Mum’s only real symptoms were left side paralysis (which has since subsided with steroids). The Doctors have said it is quite large and ‘deep seated’ so an operation to get a biopsy or de-bulk may not be possible. We find out later this week the decision. Should an operation not be possible I do not understand why radiation can’t be given as an alternative option to surgery. To potentially leave my Mum with no treatment plan at all has shocked and upset us even further.

We would like a second opinion but we are not sure the best way to get that and ensure we had all the scans etc.

If anyone had some advice we would be so grateful.

Thank you for listening.

Madesp
Posted by

Hi 

To answer your question you are entitled to get a second opinion and the hospital will forward the papers reports and images to wherever you want them to go. Depending where you live. We ourselves had two second opinions from UCLH LONDON  and  the ROYAL MARSDEN SURREY. The hospital  where your mother is registered will not be offended and they also get requested second opinions from patients from other hospitals all the time do they are quite used to it. 

In the end our experience was to stay at the original hospital because the others had the same answers. 

Hope this helps. Find yourself a good neurosurgeon. Call the secretart and ask the current hospital to forward the papers. It's all done by email  but the other hospital will need to see the patient. 

Mad 
Hopekindness100
Posted by

Thank you so much for your reply Mad. 

I’ve been looking online for a neurosurgeon at a London hospital but I feel I’m searching blindly but will carry on searching.

My fear is also that the original is just confirmed but we need to try for Mum’s sake.

Thanks again.

buttercup01
Posted by

I've heard good things of both UCLH and the Royal Marsden, as mentioned by Mad.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
TracyP
Posted by

Hello Hopekindness100

I see that you have already had a reply but I can say that I also asked for a second opinion and it was the best thing I did.

Not knowing what is happening and what to expect is awful. The news itself is horrific but not feeling confidence in the information, or lack of, is an additional and unnecessary strain. 

In my case the original neurosurgeon told me I could have surgery or 'wait and watch'. I understood both options were viable in my case but when I asked what he recommended I was told it was 'personal choice'. He refused point blank to make a recommendation so I asked my GP how to get a referral for a second opinion. She asked how far I was willing to travel (we live in the north yorkshire) and we said wherever she recommended. She said if it was her she would go the the National Hospital for Neurology and Neurosurgery in Queens Sq, London. It is part of UCL which has already been mentioned. When we got the appointment letter I rang the Consultants Secretary and made sure that she requested the scans and info from my original hospital (I didn't want to waste a 200 mile journey and both the surgeons and our time), so make sure they request the info before the appointment. The second opinion confirmed the initial diagnosis but there was a definite recommendation. We were much happier with this surgeon and have stuck with Queens Square since.

Please don't feel that you should be worrying about what the original dr would think, they are professionals. He will give second opinions for others but I think what is most important is that your mum find someone she has confidence in. You will also have time to think of all the questions you want to ask. Do write them down, literally, and take that paper with you. Get it out during the consultation and make sure you've had a chance to get answers to them. 

Sorry its taken a couple of days to get back to you but I've only just got home from a few days away. If you have any questions you think I may be able to help with on the referral process then please get back to me.

Sending kind wishes to you and your family. 

T

Hopekindness100
Posted by

Thank you TracyP for your really helpful reply.

The situation now is that we are waiting for another MRI, to locate it exactly and then see if surgery is possible. We are trying to keep as positive as we can.

With best wishes and gratitude to you all. 

buttercup01
Posted by
  • Pls let us know MRI results n decision x
Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.