Adult Medulloblastoma diagnosis

Hey everyone, 

I'm a 31 year old female just diagnosed with a Medulloblastoma. 

I'm absolutely terrified as it is in my brainstem so can't be operated on, i am going to have to rely on radiotherapy instead by the sounds of it. I'm seeing an oncologist this afternoon to have a discussion. 

Does anyone else have any experience with this type of brain tumour in an adult? I can only find information for children.

I'm desperately trying to find some positive stories and positive things to think about as i was only diagnosed yesterday and everything is so surreal and distressing right now.

If anyone could give me some hope i would really appreciate it.

Heather

  • Hi  and a very warm welcome to the online community

    I'm very sorry to read that you have been diagnosed with a medulloblastoma and that you can find very little information about it.

    Although I don't have experience with brain tumours I'd noticed that your post had gone unanswered so I thought I'd see if I could help. I've had a look on Macmillan's website and found this page on medulloblastoma in adults. Hopefully, it might provide you with some information although, as by now you'll have seen your oncologist, you may already have this.

    Wishing you all the best

    x

  • Hi Heather 

     I'm so sorry you're going through this. I'm 45 and was diagnosed with a rapidly multiplying medulloblastoma that was inoperable as it was diffusely spread throughout the cerebellum, in Nov 2015. I then got a brain infection, contracted hydrocephalus and had to delay urgent radiotherapy whilst I recovered in hospital. I then underwent seven weeks of radio and six months of chemo. I couldn't complete the chemo and did 4 out of 6 cycles of the Packer protocol. I had my first clear scan in September 2016 and every scan since then has been clear.

    I am still convalescing and my balance and memory aren't perfect but everyone is amazed at my recovery. I was told that if the treatment failed I'd be dead in the first year. 

    I really understand the numb shock you must feel. 

    But I can truly say that there is hope. My life is different but strangely better now. 

    Please ask me anything you want to about it and I'll do my best to help. 

    Warm hug 

    Lynette from Oxford

  • Hey Lynette,

    I'm sorry you have been through so much, but you are such an inspiration to me that you have pulled through everything. Thank you so much for sharing.

    I am also in Oxford too! May i ask if you were treated at the Churchill?

    I wish you all the best with your continued recovery and lots of hugs.

    Heather 

    xxxx

  • Thank you for the kind words. I was at the Churchill; what a coincidence!

    I recommend hanging out at Maggie's ( cancer charity on the hospital grounds) if you have spare time. They are very caring and helpful and offer free counselling and other courses, as well as free tea, coffee and cakes. I still go there sometimes. 

    I hope your oncologist gave you some clarity and support. Mine (Claire) said only one person had died under her care with this tumour in twenty years she had been treating adult medulloblastoma patients.

    Feel free to get in touch again if you need help. 

    Take good care xxx

  • Such a small world! Was your oncologist Claire Hobbs at all? She is mine and made me feel a lot more positive. 

    Yes, i love the Maggie's centre! Only been a couple of times so far but it's a lovely, relaxing place.

    So lovely to hear from you and perhaps we'll run into each other at Maggie's one day!

    xxxx

  • Isn't it just! Yes  she is also my neuro-oncologist. How funny...

    If you want to meet there for a coffee sometime let me know. 

    Take care! X

  • What a small world! Dr.Hobbs also looks after my son. He was diagnosed  as Classic group 4 medelloblastoma October  2017.Having undergone surgery ,radiotherapy , he will have last cycle of Packer protocol.

  • Hey Lynette,

    I hope you are doing well?

    I just had a question; I've since found out that I am considered as having a large cell / anaplastic medulloblastoma, and whilst Dr Hobbs has given me a good prognosis, I've since become super anxious that i should be worrying about this type.

    Would you happen to know any info about this type at all?

    Thanks,

    Heather 

  • Hi Heather 

    I'm fine, thanks. I'm sorry that you've received some unsettling news. 

    I don't know much about the different cell types, but I know mine was considered high risk and I had less than a year if the radio and chemo didn't work, which they did. They also said they were hopeful.

    My experience is that the doctors don't provide false hope. 

    I know it's hard to wait, but best to directly ask Dr Hobbs. She can tell you on balance what increases or decreases your risk. I found Google was not my friend... 

    I know that I had high risk things such as it being diffuse and inoperable and multiplying rapidly and medium risk aspects, too. I still survived. 

    I really hope you are again reassured and that the stresses of the process don't overwhelm you... 

    Hugs and bestest wishes

    Lynette 

  • Thank you Lynette.

    I did also get reassurance from Dr Hobbs via my lovely nurse, and whilst this was news to me it wasn't to her and my prognosis stands as it was, so i feel that i don't need to worry. 

    Just frightened me a bit seeing it written down like that!

    Thanks again!

    Heather

    xxxx

  • Dear  Lynette,

       Would you please share what is the frequency for follow-up MRI scans in Churchill?Will each time include spine and brain. Sometimes my son was only arranged by brain scans.But  I learnt from facebook groups most people have both.

    Thank you so much.

    Mary 

      

  • Hi Mary,

    I have private message'd you, so i hope that helps!

  • Dear Lynette,

       Thanks for you kind  reply. You are so helpful!

    Mary

  • Hey Lynette,

    I was just wondering if you were still active on here? x

  • I'm here! How are you? Blush 

  • I'm not doing too bad thank you! :) how are you?

    I wanted to ask, if you don't mind, at what point did you start to see clear scans after your treatment?

    I have my first scan next week after finishing radiotherapy and I'm a bit nervous as always!

  • I'm OK, thanks! Scans still clear :) I believe real improvement showed at the beginning and it was clear by the 3rd and 4th.

    Good luck! Blush you go girl, for getting through all that treatment. WELL DONE!! 

  • That's awesome to hear! You are such an inspiration! 

    Here's hoping mine follow the same! I'm just finishing up my first cycle of chemo so it would be such a good boost if treatment was beginning to work it's magic already ^_^

  • That's so lovely of you Hugging you're the heroine right now. Wishing you all the best! Chemo can be rough... 

  • Hi!

    I'm still here, feeling fine. . Sorry for the delayed response. How ARE you?

    Xxxxx