My 3-year-old niece has a very rare form of brain cancer called Choroid Plexus Tumor. It was discovered just 3 weeks ago. As its rare, cases of such around the world is small. I am trying to reach to anyone who can share their experience on brain cancer and if anyone who can help me reach other people or organizations who are familiar of this type of cancer. We just need to understand what and where is the best procedure for the little girl. Time is of the essence as its aggressive.
Her parents noticed one eye swelling and took her to see an eye specialist who advised to send her to get an MRI brain. MRI showed a heterogenous and lobular mass within the brain at the left parietal region. MRI spine showed an enhancing intradural extramedullary 0.5 cm nodule on the posterior aspect of the C7 spinal cord suspicious for a leptomeningeal metastasis. She bled quite a bit during biopsy. Owing to the vascular nature of her tumour we were advised to do a biopsy followed by a Chemo regime before proceeding to remove the tumour in its entirety. The plan is to consider 6 cycles of chemotherapy. She has completed her first cycle of 2 days last week. Her next cycle starts in 2 weeks followed by an MRI scan mid December.
We feel so lost due to the complex nature and high risk. In an ideal scenario, she would be operated on and the tumour removed by now. Seeking some light, guidance and information. Thank you.
Hi Aron and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read that your niece has been diagnosed with a rare form of brain tumour and it's natural to try and gather all the information you can about it.
As you know, the online community is divided up into different support groups so I hope you don't mind me suggesting that you also join and post in the brain cancer group, which is a great place to search for others who may have experience with a Choroid Plexus Tumour.
To join just click on the link I've created which will take you directly there. You can then join and start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could pop something about your niece's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
