Non germinoma germ cell tumours

Hello CiciCici 

I am Brian one of the Community Champions here on the Community. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying it will be "bumped up" to the top of the group and I hope seen and answered by other members of the Brain Cancer Community.

I do hope you find an answer to your question and wish you well moving forward.

Best wishes -Brian.

Hi CiciCici

a warm welcome to the community. Sorry to hear about your son's diagnosis. Life's too cruel at times.

This isn't a form of cancer I'd personally heard of but there is some info on the website that might help a little. I looked it up for you - Pineal region tumours - brain tumours that start in or around the pineal gland. | Macmillan Cancer Support

This is  a safe and supportive space where everyone's experience is different. Hopefully someone in the group has some personal experience to share with you. Please reach out here anytime though as there's always someone around 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.

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.

For now though, I'm sending you both a huge virtual hug and lots of positive energy

love n hugs

Wee Me xx

Hi Cici

I occasionally search for people online who have had the same tumour as me and normally never have any luck, but today just came across your post about your son. I was diagnosed with a non germinomatous Pineal Germ Cell Brain Tumour when I was 15. I am now 34. I do hope you’re all doing ok. Any questions, let me know and I’d be happy to discuss but appreciate my diagnosis was over 19 years ago now and things I hope will have moved on since then. 

Hello, thank you for reaching out! Wow 19 years ago!  If you don't mind me asking how did you find the whole experience?  What was treatment like for you and how are you now?  Also how did your fami react and cope?  Sorry for the million questions.  Since i put my message on here we have been linked with another young man (now 28y) who also had the same type.  We actually met last month at thek run any way.  I look forward to hearing from you when you next catch up on here, take care  

It feels like a lifetime ago. I was misdiagnosed for 6 months and developed raised intracranial pressure - so my diagnosis resulted in emergency operations and treatment and it all happened so quickly from there. Treatment was chemotherapy and radiotherapy after I had surgery to release the pressure on the brain and a biopsy to determine the type of tumour.  The oncology team were amazing and treatment was hard, as is any chemotherapy and radio, but it was a very intensive course of chemo. Not sure if it is still the same now? I am well now. I have two amazing children who are my world. Looking at me today no one would guess my medical history and I like it that way…I can always surprise someone with ‘did I ever tell you I had a brain tumour!’. 

Family reacted as best as any family can in that scenario. I was 15 at diagnosis and had two older sisters 18 & 21. Mum and dad were financially fortunate at that point in life whereby they could be with me every day in hospital. To say everyone was fine and coped would be a lie. Think it took 10 years for my mum to say aloud without crying ‘my daughter had cancer’. But everyone copes differently and I would strongly recommend support from where you can find it in terms of counselling for the wider family. Especially siblings. 

It’s great you met someone who had the same type! I’m hopefully attending a brain tumour awareness event in September in London. Be great to meet other people but am very aware of the lack of funding, research and awareness for brain tumours and know I’m extremely lucky with my situation and prognosis. 

I hope you are all doing ok