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Diagnosed with Medulloblastoma at 19
I was diagnosed with Medulloblastoma when I was 19. I'm 20 now and had the tumor removed through surgery a little over a year ago. I have undergone 6 weeks of daily proton therapy and 4 rounds of chemotherapy since then and have recently finished my last round of chemo for the time being. I have had regular MRI scans since beginning chemo therapy and thankfully haven't had any signs of tumor growth or spread since my surgery. Yet I still have major anxiety and feel an impending sense of doom every time I reflect. What are my chances of long term survival at this point and how should I cope?
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Hi @hirad, congrats on getting through surgery, radiation and chemo and no signs of growth. Yay!
That is a lot to go through and it is not surprising that you are facing major anxiety and impending doom when your mind is left to wander and wonder. I'm sure fellow young adult brain tumor members like @julcou55002 @gsu @ana15vankoeverden @kenzog33 know first-hand how that feels.
How to cope? First, I think it's great that you posted here. This can be hard to talk about with family and friends who aren't walking in your shoes. Have you talked to a social worker at your cancer center? Or do you have anyone you've talked to about your fears of the future?
Hi @hirad I was 22 in 2009 when I was diagnosed with medulloblastoma. I am now 38 years old and am an old AYA. Any questions you have about long term survival, ask me I will try to help. We may be broken but surviving I have attached a list of my disabilities and a couple photos of what is important to me
Then and Now (Then-and-Now.pdf)
Disabilities (Disabilities.pdf)
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6 ReactionsHi. My brother was diagnosed with medulloblastoma a month ago. He was able to have surgery and they resected the whole tumor. I was wondering if you could share what subtype you had and when your disabilities started. If you had surgery etc.
He is starting 6 weeks of radiation soon.
Hi @hirad, congrats on getting through your treatment with no signs of growth :). Cancer survivorship can be stressful. I thought I would share a newsfeed article from our Cancer Education Blog that provides lots of resources around stress management during your cancer journey.
https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/cancer-related-distress/
I hope you find this useful.
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2 ReactionsHi @kellyyramoss Welcome to Mayo Connect. Oh goodness, your brother is going through some pretty major medical drama. I’m so relieved to see the entire tumor was able to be resected. Now, on to radiation to make sure there’s no residuals!
I’m going to tag @es06123 and @hirad who recently shared their journeys on Connect. I just want to make sure they see your questions about subtype, surgery, etc..
I’m sure this is overwhelming for your bother and your whole family. How is your brother feeling? What is your brother’s age?
@kellyyramoss
My 23 year son was diagnosed with Medulloblastoma last year - it was non-WNT/non-SHH, group 4, CNS WHO grade 4, that metastasized to his spine. He had a craniotomy to remove the majority of the tumor. A shunt was added to assist with removing the excess fluid. My son had headaches a year prior to the tumor discovery and some eye issues like double vision and peripheral vision loss. Once the tumor was removed his vision issues improved, however 6 weeks of proton radiation damaged his optic nerve, and he lost some of his peripheral vision, and his depth perception is off. He has some limited issues with his short term memory issues, and his hand/ eye coordination is slower as is reaction time to events. He just completed 6 months of cisplatin chemo - one week of chemo, off three weeks with day five a blood booster shot. So far the last scans showed the cancer was stable and shrinking. The next scans are in 6 weeks and we hope they show it is gone. His personality has slightly changed a little. Praying for your brother and family. Cancer is a lonely, horrible journey. Angie