Medullablastoma survival rates

Babyfox Member Posts: 2
Hi, I've just joined and would like to connect with other medullablastoma survivors. I am 33 years old and was diagnosed with a grade IV medullablastoma when I was 31. I had surgery which removed what the naked eye could see of the tumour. I had chemo before, during and after brain and spinal radiation. Overall I'm doing ok. My stomach is poorly most of the time though and I've had an endoscopy and blood tests and the doctors keep telling me that it's from the radiation. I get frequent headaches but all of my mris have been clear thankfully. I was told told that this type of tumour has a very high recurrence rate within the first 5years. I am constantly worried about the tumour coming back. Is the anyone who has survived a recurrence.


  • connsteele
    connsteele Member Posts: 232
    Our son was diagnosed with a
    Our son was diagnosed with a medulloblastoma in 1985, when he was 8 years old. He too had surgery, and the neurosurgeon said he "removed everything he could see." After that he had whole brain and spinal radiation, and a chemo regimen of CCNU, prednisone, and vincristine. He survived 26 years without a recurrence. However, in April of 2011, he was diagnosed with another type of brain tumor, anaplastic astrocytoma. He again underwent surgery, but only enough for a biopsy could be removed. He had another reduced course of radiation to the tumor site, and several chemo regimens, including Temodar, CCNU, and procarbazine. Unfortunately, none helped and he passed away in April 2014 at the age of 35.

    His docs said that the second tumor was caused by the radiation he had when he was 8. However, I'm sure that brain radiation given today is much more technologically advanced than what he had 26 years ago, and I understand that they can target the beam better and even give lower dosages with more effective results. So, I would not take it as a foregone conclusion that you will have another type of brain tumor later on.

    So don't be discouraged. As you can see, he had a good 26 years, disease free. My only advice is even after your five years of survival are up (and I'm sure it will be), I think you should stay connected to a NO who has expertise in cancer survival issues and continue to be followed from then on. Our son's NO said that long-term cancer survival issues is an emerging area of medicine but is still lagging behind.

    Hope you are doing well.