Brain tumours

For people affected by brain tumours or brain cancer to get together, ask questions, share experiences and support each other

My son has a brain tumour

Rachael8875
Posted by

My son James is 16 and has just been diagnosed with a brain tumour, the tumour is at the back of his head on the left hand side, it is approx 8cm by 9cm. He is having surgery on Friday.

The surgeon who I have every faith in explained today that it is likely that the tumour is malignant I just wondered if they have to give you worse scenario and may it is not.  Just hoping for best possible outcome.


I'm not sure what I want to know really I just hoped that someone may have had a similar experience and might be able give me some hope, I love my boy with every bone on my body and I would just like to know what I should do to support him.


Thanks in advance.

Carolyn28
Posted by

hi  

I am so sorry to hear that you have to endure this with your son, when I was diagnosed I said that I was glad it was me and not my kids.

My youngest son is 16.

From all of my experiences over the last 2 years with Macmillan online all I can say is that my fears about brain tumours are a lot less panic stricken than they were previously.

Just today I had the blow by blow account of someone visiting the U.S. for proton therapy.

There are options but you do sometimes need to make a bit of a fuss to get people to act.

How is James accepting the news ?  Is he just about to take his GCSEs ?  He needs to see that there is hope for a successful outcome.

There is this proton therapy for a start!! tell him that there is this fairly new treatment and it has had some success ..

but first line is surgery, surgery is still the best treatment for cancer, you simply cut out the cancer and it's gone

2nd line is chemotherapy and there are some very good chemo regimes for brain tumours

3rd is radiotherapy and also now proton

but also we have targeted therapies, Avastin is one, let me look up that too

I can paste lots of links

would you like to talk to the helpline first ?   have a good cry and get things off your mind / chest

honestly there are quite a few options and quite a few success stories to share and he needs to understand that

what other info do you have on this tumour, and large doesn't mean aggressive by the way, sometimes large are slow

Carolyn

xxxx

prettyfedup
Posted by

Im sorry about your son. I have a GBM4 and before it was diagnosed they were convinced it was a secondary I had to have a PETct scan to look for the primary. Luckily it was the primary and had not spread. read my bio if you're interested. I was diagnosed March 15th 2015

Love

xxx

night
Posted by

Hi Rachael,

I am very sorry to hear about your son. My daughter was diagnosed at 15.

I can tell you I was too terrified to ask for grade or prognosis.

My daughter had proton treatment as her tumour is near the brain stem and using proton meant that damage to this would be reduced.

Conventional radiotherapy is also an effective treatment and it may be that conventional radiotherapy is OK for treatment of your sons tumour.

Hopefully the position of your sons tumour will allow for complete tumour removal - this was not the case for my daughter.

Chemotherapy is likely and will be tough going with risks of neutropenia (you will learn about this).

There has been a permanent impact on my daughter but she is still with us and now back at school and trying to catch up on studies for GCSEs so there is a return to some normality.

Sometimes our children will want to protect us from feeling bad so may not open up about how they are really feeling.

Take this step by step, do not rely on google (the statistics are usually very outdated) and you should have hope.

My thoughts are very much with you and your family and I hope the surgery goes well tomorrow.

xx

Neil