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my 19 year old son has just had a Medulloblastoma tumour removed and is going through radiotherapy atm. We are devastated by his diagnosis and as this is usually a child’s tumour type haven’t found any adults out there with the same tumour yet?? Please reply if you are in sane or similar position as desperate for advice??

  • Hello

    I am 23 years old. I was diagnosed september last year with a medulloblastoma. Joined this group just now to find people like me too! I had 6 weeks proton beam therapy in manchester after my initial surgery. I am currently in chemo at the moment. 4 out of 8 cycles completed! 
    i too struggle to find adults with tumours like mine and its so worrying and adds to the uncertainty. 

  • Hi

    Thanks for your reply. Yes it is very isolating as not many adults have this tumour. My son is 3 weeks into his radiotherapy and has lost nearly all his hair which was to be expected. As he is under 25 he is treated for chemo in the teens and young adults section in Bristol hospital. He was diagnosed end of March and had  9 hour op almost immediately and all of the tumour was removed, However they think there are some cancer cells developing in his spine too so he is having radiotherapy there too. Have you met anyone else who has this disease? 

  • hi Pj999

    a warm welcome to the group. So sorry to hear about your son's diagnosis. Life's too cruel.

    I took the liberty of looking medulloblastoma up on the main website and found some info that might be of use. Here's the link Medulloblastoma (information on medulloblastoma in adults) | Macmillan Cancer Support

    There's also information on The Brain Tumour Charity's website Medulloblastoma | The Brain Tumour Charity There were numerous other articles but that link will point you in the right direction to find them.

    It's not a tumour type that I am familiar with. My personal experience lies in supporting my husband with his stage 4 brain tumour (glioblastoma) but I can empathise with the emotions you are going through.

    This group is a safe and supportive community as you've already seen. There's always someone about to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We've got you.

    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.

    I'm not big on giving advice but if I can suggest something its this- focus on the facts as you have been told them by your son's medical team and not the what ifs. Everyone is unique and tumours impact each person differently. Steer clear of Dr Google- he's a scary dude.

    Please also take care of your wee self here. This is an emotional rollercoaster ride for everyone involved so please take time for yourself to recharge your batteries. Taking "me time" isn't selfish, its essential to keep those batteries charged so go for that walk, meet those friends for coffee or a drink, go to the gym- even 10 minutes in the garden with a coffee and book can make a big difference.

    I hope some of this has been helpful.

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong. You are coping so much better here than you give yourself credit for. (You'll just need to trust me on that.)

    love n hugs

    Wee Me xx

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

  • Hello

    so sorry to hear this and sorry to hear about his spine too. i’m sure that can be treated too but its the uncertainty of it all isn’t it? 
    I found another person on a facebook group. He was diagnosed age 29 and had treatment but not surgery. It now remains stable 15 years later. I found this somewhat comforting. 
    I also met someone my age whilst I was having treatment in manchester who had it too, he too was undergoing treatment. Again we couldn’t find many others out there. 
    my first initial thing was to search for people similar to me and also so many journal and research articles. This exacerbated my anxiety and fear. I always try remember that every person and case is different and numbers are just that, numbers. 
    Again I met someone at manchester he was 25 and he too had a medulloblastoma and was going through the same treatment mentioned above. It seems to be the routine thing. He and his family too expressed they cannot find people who are adults who suffer from it. 
    what type does he have do you know? mine is SHH (sonic hedgehog activated) and its TP53-wild type - no mutations. 
    I too had radiotherapy to my whole brain and spine.

    im happy to help in ways of offering support and also experience of treatment too. i know its bloody rubbish. there is light at the end of the tunnel. Unfortunately I haven’t come across many people with it so it’s difficult. 
    sending so much strength, best wishes, and love. 

    bridie x

  • Hi 

    Thanks very much for getting back to me. My son is so young to ge going through this and I have gone from feeling desperately alone and overwhelmed to managing to cope and support him and even feeling hopeful at times. He has an identical twin brother who helps outta lot but apart from him we are alone as I am a single parent. How did you cope with your husbands diagnosis?

  • Hello

    it’s truly awful. As soon as I was diagnosed I jumped online and searched for people and it just made my anxiety worse not being able to find people. 

    i have met quite a few people my age and the same age as your son, as well as older, who have had this diagnosis. I met 2 people in manchester going through treatment too. The treatment process seems to be the same if not similar for all diagnosis’.  It’s hard not knowing too many people but numbers and statistics mean nothing. It’s individual cases we need to stick to. 
    i also found a middle aged man had been diagnosed age 29, this was 15 years ago, the tumour wasn’t removed but was treated, he’s stable and still here today. 
    i’ve met children who got through it and grew up and are now 30 years old. 
    what type does your son have do you know? Mine is SHH (sonic hedgehog activated) and TP53 wild type - no mutations. 
    i also met someone a year younger than me who had a lesion on his spine too, he is now having a slightly different chemo cycle to me. 
    other than that there isn’t too much info out there. 

    I struggled massively receiving the diagnosis, so did my partner, and parents, we all sort of struggle through together now. we have no other choice. Eventually I had to stop with statistics and research and mortality rates and focus on me as a person and not a number, and focus on the positives however small and sparse they are.  

    i am more than happy to answer any questions/share experiences to help, wishing I could help more. I’m sorry. I can’t imagine your pain and worry for your son. But he will do this and get through this. The first dew months were my hardest coming to terms with it and accept it. Please let me know if I can help at all. 
    sending so much love, strength, and best wishes. 

    bridie x

  •  Hi

    Oh you're right- he is so young to be going through this. I truly feel for all of you.

    How did I cope?...million dollar question. I have written a couple of blogs for MacMillan that tell that tale. Here's the links

    Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

    “I’m fine”: how do you really cope as a carer? - Macmillan Online Community

    Day to day I take each day one step at a time. Those blogs were written about a year ago and our world is still very much in limbo. We were handed over to the palliative care team at the end of February after our final call with the oncologist where he said there was nothing else they could do and there was no point in doing any more scans. He gave us a fresh timescale of "a few weeks, 2-3 months at most". That was 12 weeks ago.

    On the tougher days, like today's proving to be, I break the day down into manageable chunks. I'm still working from home so today's markers have been "if I can get through that 10 am call"  If I can get to lunchtime" "If I can get through my 2.30 call" If I can get to 4.30 I can log off"... not quite there but the plan is to go for a walk when I finish work. (I had a quiet moment so logged on here to reply- don't tell my boss LOL) 

    I do try to take a mindful approach. I try not to stress about things I can't influence or control or change. I try my best not to sweat the trivial things. It was my own son who's 25, that brought me up short on that a few months ago. I was stressing over something his sister had said (she's 23) and he said "will it matter in 5 years? If not, let it go"  I paused and thought for a moment and realised he was spot on. How did my 25yr old get to be so wise? Ever since I've tried to ask myself that question every time I find myself getting stressed and wound up. Easier said than done some days.

    It probably doesn't feel like it just but you will get to a point where you've accepted the situation as best as anyone can and it will likely happen without you realising at first that it has. A new routine will emerge and gradually life will find a new balance as you support your son through this.

    I'm not too proud to admit that after 33 months of this emotional rollercoaster ride I'm exhausted mentally, physically and emotionally so please do what you can to look after yourself here too. This can be a gruelling journey at times. This community has been a great source of support to me so please reach out here whenever you need to, even if it is just to vent.

    hope this has helped.

    Sending love and hugs and strength

    Wee Me xx

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

  • Hi

    Alex is group 4 Medulloblastoma and because there is suspected malignancy in his spine has been given a prognosis of 30/40% of reaching 8 years without the tumour retuning. Then if it does not return in 8 years he will be cured. The oncologist has said that she has given him the very worst outcome so as not to give false hope. However as this disease is mainly in children I think it’s very difficult for them to give accurate prognosis. I now try to not Google about this as I have driven myself mad with it. You say you have finished radiotherapy, did it tire you out/affect cognitive abilities? Alex will have chemo in hospital after radiotherapy at 3 days at a time as an inpatient every 2 weeks is your treatment similar?  Does the chemo make you nauseous at all ? So good that you met others with this disease as you do feel alone when you can’t share stuff.

  • Hi

    One more question how did you manage to meet these people with Medulloblastoma as I haven’t come across any in our hospital?

  • Hello

    I am so sorry to hear about Alex. It truly is a hideous disease and doesn’t care who it attacks that’s for sure. 
    I became obsessed during the time of my radiotherapy. Constantly searching at articles and statistics and just clutching at straws. I believe this is actually part of the process of grief and acceptance. I had to stop because I was making myself worse. I know it’s out of my hands. 
    however, I do believe that statistics are numbers focused entirely, not individual cases or people. It’s so different for everyone. 

    I met people whilst receiving proton beam therapy in manchester, they treat all cancers so I met a lot of people however I met someone there in the crew as myself. I also met a staff member who worked there and recognised a fellow telltale scar at the back of his head. He had it as a child. He is now almost 30 years old! 

    Months after my diagnosis I joined a facebook group that tries to focus on humorous posts too. However I wasn’t ready to do that in my initial stages of diagnosis. I was severely depressed. Not sleeping at all. I spent every minute of the day thinking, crying, shaking, unsettled. I had a lot of input from psychology to get me through this as it became unbearable.

    I did some fundraising when I was first diagnosed and braved the shave before cancer robbed my locks too. It featured in some newspaper articles, this was how I found a few other people as they reached out with similar stories and the same diagnosis.

    Radiotherapy was hard. It took it’s toll eventually. Tired me out, hurt my back, gave me bad headaches. My memory is rubbish, its hard to remember things now, and was so after RT. I got some dizziness towards the end and skin reaction down my spine and on my head. 

    Chemo is hard. Yes it’s nauseating at times but they have fab drugs that can really help. However, one drug that has knocked me is Vincristine. This is used in all medulloblastoma regimes i’ve seen so far. It cripples my back and some days getting out of bed, moving, and walking, is difficult. The pain can be extreme. Again, they give painkillers to help with any pain and also many different meds on hand for any other symptoms! I also have tingling and numb fingertips since February. This too is from the chemo. This regime isn’t an easy one I was told. I expected to be tired and vomiting. But it can be a lot more of that which took me by surprise. My regime is similar to that too, so is others i’ve found with this. It’s usually called modified packer or packer chemo. 

    Chemo also drops blood counts massively. I’ve had 3 transfusions so far. Its worth expecting rubbish symptoms and being glad you don’t get them than to not expect them and be disappointed if you encounter them. 
    again im sorry its so long. Im more than happy to share my experiences and anything thats been helpful, im sorry i can’t do more. If i could make a difference in just 1 persons life during this then I wouldn’t feel so useless! 

    The initial pain and shock does somewhat ease and changes to a different pain. One that sort of sits with you in the background but isn’t as overwhelming and overbearing. 

    There isnt anything anyone can say to make this better. But there are ways to make it a little easier. And i’m 1000% sure Alex will take a huge comfort in having his mum being so supportive like you are. Them things mean so much. 

    you’re doing great, im sorry i can’t do more. If you need anything please ask or if you want to know more just let me know. 

    sending love, and strength. 

    Bridie x