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Oliglodendroglioma stage 3….

kulieS
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Hi 

My sister has been diagnosed with primary brain tumour, Oliglodendroglioma stage3. She is my best friend and an incredible human being, working within the cancer field herself, she makes a valuable contribution and I'm so proud of her. Sadly she had a grand Mal seizure (Lasted 8/10 mins she stopped breathing convulsions and foaming at mouth, total loss of control violent seizure) following a overnight spa trip we both were on, previous to this she had been a little tired and had a partial seizure a month prior (partial lasted few mins and she was in control of what was happening apart from not being able to move her head which seemed to have got stuck to her left) 

 

it's been a whirlwind since this episode, she was rushed to hospital where the tumour was discovered, she has since sufferers with manic psychosis caused by steroids and lack of sleep, she has had her tumour removed (over 90%) and is due to start 5 sessions of chemo and radio imminently. 
 

She is scared as we all are. I guess I wanted to come on here as I would like to share support, can she talk to anyone here that can relate to any of what she has been through? Has anyone had this type of brain tumour before that can share their thoughts perhaps shed some light on the journey? 
 

I have read that brain tumour are likely to return, albeit a primary source (frontal lobe) they commonly return to the same place. She's just not strong enough and needs strength from people like yourself who are also on your own journey, a journey which she says she feels alone and isolated. 
 

I wish you all have the strength to continue your own journey and my prays are with you all and your loved ones. 
 

Kulie and Suki 

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    Hello Kulie and Suki, 

    Thank you for sharing your moving story. Your sister sounds like an amazing person and I completely understand why you feel so proud of her. It's great that she works in the cancer field herself and makes such an important contribution. I am so sorry though to hear that she has been diagnosed with an oligodendroglioma - there is information on our website on this page on this rare brain tumour. It mentions that only 3% of brain tumours are oligodendrogliomas so I can imagine your poor sister is feeling incredibly isolated and I can understand why she would want to connect with others who have been on the same journey. 

    I had a look on our forum to see if I could find other members who are currently active on the forum with the same type of brain tumour but as it is so rare I haven't been able to find much. I do hope though that they will find your thread and share their story with you. It might be worth you also getting in touch with organisations that specifically support people with a brain tumour and they may be able to help you find others with the same type of brain tumour. For example, the Brain Tumour charity have online brain tumour support groups and you can find out more about these on this page. 

    I hope that your sister will be chatting soon to others who find themselves in a similar situation and who understand exactly how she is feeling at the moment. She is also welcome to give our nurse helpline a call on 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    We're thinking of you both during this difficult time. I am sure your sister really appreciates having your support and knowing that you care about her so much. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

     

  • Offline in reply to Moderator Lucie

    Hello [@kulieS]‍

    I came across your post and I can empathize with what you're going through as my partner was diagnosed last year with an oligodendroglioma grade 3. 
     

    It is incredibly rare and hard to find people that are going through the same thing. 
     

    My partner has completed all his treatment and is recovering very well and there is no sign of cancer in his routine MRI's. 

    if you ever have questions for me feel free to ask. 

  • Offline in reply to crankiin

    Hi [@crankiin]‍,

    I'm sorry to hear about your husband but glad to hear he coped so well with the treatment and has had clear scans. 

    My husband was diagnosed with an oligodendroglioma grade 2-3 in September 2020, at the age of 28. He had surgery, radiotherapy and chemotherapy and is on 6 monthly monitoring scans. They have been stable so far which is amazing! I have also found it hard to find anyone that has been through the same thing. How is your partner doing now? 

    I think at the time of diagnosis and treatment I was in survival mode and it's only hitting me in the last year that this will be something that will never go away. We just got married last year and should be at the point of looking to start a family but the fear of the unknown and when the tumour might return terrifies me. 

    How do you cope with it all? I feel like no one really understands as they think 'the cancer is gone' and we can forget about it but unfortunately brain tumours are not like other cancers.

    Sorry for the long response but I would appreciate talking to someone else who understands!

     

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