We have neither good news, nor bad news. Bottom line, there is something there but they don’t know what it is. MRI scans have changed so much in the last few years, with so many variations of density that they can take pictures of. On most of the different density levels, everything is all clean except one 1 specific density level. The original site where the tumor was, it is all clean. However, on the same side of of the original tumor site, but deeper in the brain there is a fuzzy cloudiness. They don’t know what it is, that’s the bottom line. We have done some research prior to our meeting and found radiation necrosis sometimes occur in a very few cases after radiotherapy. What is radiation necrosis? It is when the radiation cause the tumor tissue to become toxic. Dead or necrotic tissue can become toxic to surrounding normal tissue, and swelling may occur.
This most commonly occur between 6-12 months after radiotherapy but only in a few cases. On an MRI scan, radiation necrosis can look similar to a recurrent tumor. A positron emission tomography (PET) scan may be done to differentiate between active tumor or radiation necrosis. Sometimes, these tests are not definitive.
We will start Chiane on Hyperbaric oxygen therapy again. Just as wounds need air to heal, damage tissue within the brain need a high stream of oxygen to regenerate itself. Vitamin E is also fantastic to promote blood vessel formation in the brain. If all else fails, drugs can be used, but that’s our last option at this point. We have been working extremely hard to build Chiane up and we will try and avoid any pharma drugs as much as possible. The next scan will be end November. If it is cancer, it will definitely show then. If it was radiation necrosis, the cloudiness should be less. We will therefore treat it as radiation necrosis until proven otherwise. We found a few cases where children were treated as if the tumor was back; only to realise months later it was scarring fatigue, or radiation necrosis.
The next scan in November will be the definite verdict. Our plan of action now will be:
1. Hyperbaric oxygen therapy and Vitamin E to reduce radiation necrosis, and to prevent swelling or toxicity in her brain. If it is not radiation necrosis but cancer, it will show during the next MRI scan.
2. Focus on the protein level and markers of the MLH1 gene.