Brain tumours

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

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

Rachael8875
Posted by

Thank you for your replies I appreciate your advice.

James had the tumour removed and the surgery was sucsess he made a really good recovery.


We got the results yesterday james has a GMB 4 and now needs radio and chemo thearapy.


How sucssessful is the treatment?


Thank you x 

Carolyn28
Posted by

hi  

good news on the op and recovery

chemotherapy is not pleasant but you just have to keep an eye on side effects

the radio v proton is interesting, have you asked about that ?  or if they don't have it in your hospital if you can transfer ?

Carolyn

xx

Rachael8875
Posted by

We have an appointment with the oncologists on Tuesdsy so I am just putting together my questions - proton now on the list - thank you!

I am also getting some cannabis oil as I have read lots of good things and we will try anything help James.


I have also researched some clinical trials there is a vaccine that may help not sure as I need to do more research but I'm am literally going to try everything I can.


What are your thoughts on the cannabis oil and vaccine?


Thanks x

Carolyn28
Posted by

well I'll be honest with you ,  I was skeptical about cannabis oil, my daughter was all for us taking a trip to Amsterdam but another friend has been using it and her scans have shown a difference, I think it needs more research and I think she needs a regulated supply but I think it sounds promising

but it is illegal here, although we're working on it, she's ex police and knows how to approach people

we're not allowed to promote alternative therapies, which I'm sure you can appreciate

think back to the days when any old necromancer could whisk up a potion and make fantastic claims

we're desperate and we'd be easy prey

so I'll always advise sticking to something the experts recommend, perhaps I can link you to my friend.  I'll make friends with you and send a message

Carolyn

xx

night
Posted by

I am glad to hear your son has recovered well from the operation.

Cannabinoids have been in use for thousands of years. I found this link which I think has some very good points in it but may be a bit old now but nevertheless still has some important points

scienceblog.cancerresearchuk.org/.../

If it were possible to source cannabinoids made legitimately under lab conditions I'd not have concern myself - this is just my opinion though (legal obstacles aside). Hopefully obstacles to medical use will be overcome, certainly this seems to be the case in the US (many US states have made the use of cannabinoids legal for medicinal purposes and the UK tends to follow after a few years).

Immunotherapy is the great hope for us all I believe and I have spent countless days and sleepless nights reading the accessible material and there looks to be great potential in this area.

The American brain tumour organisation http://www.abta.org/ is a good resource in additional to https://www.cancerresearchuk.org/ and I've read of other research in Europe and the US. Immense research and the associated research funding is needed.

Your oncologist should be aware of key current research as they will be keeping apace with medical publications available to them and I'd caution against relying on any internet sources that are not legitimate research/medical bodies so use your time with the oncologist to explore what is happening now and perhaps talk about medical trials too

When I look back to the early days post diagnosis I recall I exhausted myself doing such research but felt I had to try and do something so I'd caution against doing the same but know how hard it can be to stop and try and rest.

xx

Carolyn28
Posted by

 

they have to be seen to be doing the right thing by the guidelines

while it's illegal and unregulated you just don't know what you're getting

Roll on the day they see sense.

I think we should all fly to a country where we can buy the right stuff legally and 200 of us march back into the country with the press / paparazzi on standby, they can't arrest all of us and it would raise awareness

xxx

Carolyn

xxx

prettyfedup
Posted by

I deleted it as probably get more drama from McMillan