Young adult with glioblastoma diagnosis

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HI, this is my first post, have only joined the forum today.  I was looking for a group or more information about young adults with this condition. 

My 21 year old son was diagnosed with a brain tumour in October.  He had a craniotomy to remove at end of November and then spent 6 weeks in hospital mainly having rehab due to suffering neglect syndrome after the operation.  This affected mobility down his left side meaning he is having to relearn how to move his arm, leg, hand etc.  He was discharged from hospital last week and physically is doing really well and making fantastic progress with his mobility. 

The day after his discharge we received the final biopsy results which diagnosed a grade 4 glioblastoma - this came as somewhat of a shock as up to then it hadn't been mentioned so wasn't really on our radar. I  feel I could type all day about everything so forgive me if a bit waffly. 

I am struggling very much emotionally which makes me feel very selfish and have so far been unable to find  much information on people his age with this condition, this I would like both for my own research and more importantly to try to put my son in touch with others his age group who can relate to what he is experiencing. 

I also want to know if there is hope here, my son is about to commence 6 weeks radiotherapy with chemo starting concurrently and due to run through to September.  I know the internet can be a dark place especially when typing the word glioblastoma into a search engine but I can't help but look for information and the statistics are so scary.  My son is clear he doesn't want to know his prognosis nor does he want me to discuss with the consultant and after a week to process this I think it is the right decision.  I just want to be able to find some balance and rationality with this so I can best support my son who after all is the patient here - it's not about me.  

Sorry for the long post. 

Thanks.

  • HI Pushkin

    a warm welcome to the online community. So sorry to hear about all you and your son are going through.

    This is a safe and supportive group with members of all ages and on both sides of the coin. My personal experience lies in supporting my husband through his GBM journey. I won't bore or scare you with that tale here but the gist of it is on my profile. There's always someone about here to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    I admire your focus on wanting your post to be all about your son but please do not underestimate the impact this is having on you as his mum and on everyone involved. A GBM journey is an emotional rollercoaster ride for all involved so please make sure you take care of your wee self here too. 

    Please steer clear of Dr Google. He's a scary dude. Focus on the facts as they appear in front of you in relation to your son. Everyone travelling this journey is unique and these tumours impact people in so many different ways. The articles that are published are great but they do make scary reading. Timescales etc are all based on best guesstimate and published averages. No one is average!

    You might want to explore The Brain Tumour Charity though for some further information when you feel up to it.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    My husband was 50 when he was first diagnosed so considerably older than your son but still young-ish. He was a fitness freak, a marathon runner and that fitness stood him in good stead as did his positive attitude. His key coping mechanisms were running and total denial. Now I'm not advocating denial as a good way to cope but I get that it works for some folk.  After his surgery and the 6 weeks of chemo/radiotherapy, he declined all other offers of treatment. It was his decision and one I had to respect. In the following months/ years, he ran two marathons, achieving a PB of 3:15:18 in Manchester in 2022 and 3:33:34 in London in October 2022. He went skiing to France in March 2022 with our daughter. He even managed to get a part in series 7 of Outlander as they needed folk to row a boat! What I'm trying to say is he continued to live his best life as best he could.

    I hope this has helped a little. Feel as though I'm waffling a bit...sorry.

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

    love n hugs 

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Great and spot on response.

    I'm going through similar shit with my 60 yr old wife, yes different age etc. But I feel its basically the same.

    Its so bleeding hard. but we feel the most positive aspect of it all is to be positive through it all if you can.

    which its very hard to do.

    but this response from wee me is just about how it is really.

    Its hard work but keep positive.

    Reach out if you need any other feedback,

    bless you and love you,

    Bob

  • Thank you both, it does feel better to write about this and know there are others who can relate.  I am feeling less emotional last couple of day. I didn't think I had that many tears to cry as I have so far this year but I could cry forever and it wouldn't change anything so I want to reach a point where I can be practical and productive.  I will definitely be checking back here but I think I need to ration it - I don't know how others feel but I don't want this to be all I think about, my son deserves some joy in his life, some trips to look forward to etc. I also want/need to get back to work - I suppose what I"m saying it I feel we need to try and maintain as much normality as possible.  Thank you.x 

  • Hello, I find it helpful to read your stories and see how it is for others. My heart goes out to you.

    By way of update on my brother’s brain tumour (grade 5) they estimated he had two years. Well he passed the 2 year mark (in September) so yay for that.  There has been new tumour growth which was treated using the cyberknife at the royal Marsden. He has some damage from the radiation but it seems to have stopped the tumour. He has monthly scans.  I’m grateful that he’s able to chat and has full mobility and enjoys trips to my house regularly for dinner and cards. Hoping it stays that way…

    Sending you comfort and hope and strength.

    Caoimhe

  • Hi, `things did seem to settle a bit, my son went to his planning appointment last Friday to have his mask made, a couple of scans and meet the radiographer and cancer nurse. My husband took him, I managed 4 days in the office and things really seemed to be getting on an even keel.  We had our son's schedule for the radio and chemo which was due to start Wednesday 31 Jan.  Then yesterday he had a short notice urgent appointment with the oncologist.  Turns out they found fluid on his bran when he had his MRI scan, we have an appointment with one of his neurosurgeons tomorrow and have been advised it will need to be drained under general anaesthetic so it looks like its back to hospital for him.  Seems this cancer lark is a real rollercoaster. 

  • HI Pushkin 48

    It's a complete rollercoaster ride for everyone involved. Hopefully they'll get the fluid drained and then your son can start his treatment. One step at a time....

    sending you all love and light and hugs and positive energy

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks Wee Me, we saw the neurosurgeon today and the bottom line is they are unsure what to do. First option is to start the radio/chemotherapy as planned next week with our son having weekly MRIs to map the treatment & monitor the fluid.  Second choice is to drain the fluid which would delay the start of radio/chemo for about a month while he recovers from the op.  Caught between a rock and a hard place - there is a monthly mdt meeting this weekend and they are going to discuss it there and give us a recommendation on Monday.  I was certainly unable to give my son a steer on which option he should take.  

    On a positive note I have found a person called Alex Savage, in his 20s I think, who was diagnosed with a glioblastoma 2 or 3 years ago - yes he has dark times and needs medical treatment at times but he is still working, still doing sport and has just got married.  This is is the first media about this condition that has a hopeful tone - and i know this is where we need to get to as a family for the sake of our son, so he can have the best quality of life each day. 

    xxx

  • I wouldn't have thought it possible a month ago but things are much calmer and dare I say it feels more normal now - well the new normal I guess.  Our son (M) didn't need the operation in the end as they did another CT scan and is showed the fluid was reducing on its own - good news in that he didn't need surgery and that his body was healing itself without medical intervention. 

    He started chemo and radiotherapy on Thursday and horrible as it is to watch him go through this it's better to have a routine and there is an end in sight.  M did complain of nausea this morning so had an anti sickness tablet and he is tired but is still doing physio each week and putting in real efforts to improve his mobility & fitness (puts me to shame in all honesty!) 

    I have even booked some theatre tickets in London for next month as its M's birthday and we so need to have some fun back - I bought cancellation insurance in case he isn't well enough to go - as I said its a new normal. 

    I am a lot more rational and not so emotional (aka weepy) but I do wish I could get to a place where I"m not constantly thinking about this and what might happen etc.  Maybe once the radiotherapy finishes (he is doing 6 weeks) I may be able to do that.  I suppose I can't help but feel like M has a bomb in his head but we can't see the timer so don't know when it will explode - I struggle to know how we can all live with this - but I know we have to and we have to try and live the best days we can.  

  • Hiya Pushkin

    im really glad things have settled a little and M didn’t need the surgery. I think we all understand the initial panic and desperation that kicks in at the beginning, it’s all consuming isn’t it! I found the panic would come back occasionally when there were changes or something new but just remember that it all becomes ‘normal’ and it all settles again. 

    Hope Ms treatment goes as well as possible :) 

    xx

  • Well we are just over 2 weeks into the initial radio/chemotherapy so a third of the way through.  M is coping quite well, main side effect is tiredness although he does think he may be getting a rash on the scar site - he has some cream for that.

    The main frustration at the moment is that we are changing oncologist.  We had 3 appointments with the original one and had issues at every meeting.  I won't go into too much detail but just felt that she was vague and we were having to lead the sessions and bring things up.  The neurosurgeon was very apologetic and we are meeting the new oncologist on Monday.  I hate confrontation and doing stuff like this but the excellent care M has from all the other doctors really showed this one up.