Seeking Brain Tumour - Choroid Plexus Tumor

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Hi everyone,

My 3-year-old niece just got diagnosed with a very rare form of brain cancer (Choroid Plexus Tumor)3 weeks ago. As it is rare, cases of such around the world are small. I write to you who can share your or your loved one's experience on brain cancer. If you know of other people or organizations who are familiar with this type of cancer, do reach out to me.

We need to understand what procedure and which medical institution be able to provide the best for this little girl. Time is of the essence as it is aggressive.

The discovery of the Cancer was when her parents noticed one eye swelling and line on her sclera, they took her to an eye specialist who advised on an MRI brain scan. the MRI showed a heterogenous and lobular mass within the brain at the left parietal region. It showed an enhancing intradural extramedullary 0.5 cm nodule on the posterior aspect of the C7 spinal cord suspicious for a leptomeningeal metastasis. During the biopsy, she bled quite a lot. 

Owing to the vascular nature of her tumor, the doctors advised the following treatment: do a biopsy and follow up by a Chemo regime before proceeding to remove the tumour in its entirety. The chemotherapy will be for 6 cycles. She had her first cycle of 2 days last week and her 2nd cycle will be in 2 weeks' time. This will be followed by an MRI scan middle of December.

We are feeling very lost due to the complex nature and the high risk. In an ideal scenario, she would be operated on and the tumor removed by now. I seek to ask you whether this course of action is best or there is another way.

  • Hi Aron

    a warm welcome to the group. I am so sorry to hear about your niece's diagnosis and about what you and your family are going through. It always seems a thousand times harder when it involves a child.

    As you say, that tumour is rare, so apologies I have no knowledge or experience of it. This group is a safe and supportive space so I'm sure someone will be along shortly to offer their words of wisdom.

    You can also try reaching out via the Helpline (number is below) to Ask an Expert. They may be able to offer some guidance to you.

    For now, know I'm sending you all healing love and light. Stay strong.

    love n hugs

    Wee me xx

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