- The one question that I have that I have not found an answer for yet is this -- ependys like to regrow, usually in a different area, correct? (I guess I have a couple of questions, smile) The real question is, what is the percentage of regrowth and are we talking about regrowing once in x number of years? or every so many years? and then is it usually of the same ilk - slow growing, semi-benign? And once a follow up MRI detects a tumor, is it usually quite small yet? and would they want to take it out right away or wait until it starts to cause problems?
I can give my 2 cents to several of these questions Ependymomas like to reoccur. They can reoccur shortly after resection or it can be many years. (If I remember correctly, there are people on this list that had their first reoccurrence 8 or more year post original tumor while others had their first reoccurrence in less than two year, and some have not had a reoccurrence). They can reoccur anywhere that your spinal fluid goes. That is how the tumor cells travel. My Dr. said that once you have a regrowth, you are usually looking at a higher grade, but there is no absolute way of knowing the grade without having a resection or biopsy. With these tumors the definition of benign and malignant really doesn't have a lot of meaning since anything in the brain is bad. Annual MRI's are the best defense for reoccurrence since once you find one of these buggers, you can start considering options. In my case, the new tumors were found and treated while they were relatively small and the damage that they caused was limited.
Of my 4 recurrent tumors, the largest died from the inside out. One has disappeared completely. One has held steady at 13 mm and the other one has held steady at 3.6 mm. The two remaining tumors could be dead the doctor said. She plans on doing a PET scan to supplement the MRI when I go off of Temodar in about 7 months.
Mason D
My husband's first recurrence was in the exact same spot. The first tumor was removed, no radiation (spinal tumor at L3-4). The second tumor was in the exact same spot, appeared about 2.5 years later and was removed followed by radiation.
His next recurrence was 5 tumors and they were scattered - S2, L5, T12, T9, and 3rd ventricle. Resection was not an option and they were all radiated in three rounds. They are all either shrinking or disappeared completely!
There is no guarantee that they will recur or not recur. These things are so rare to begin with that a multiple site recurrence like John's is even rarer.
Yes, regular MRI's for sure. He was on a 4 month cycle post treatment, then he moves to a 6 month cycle, then a 1 year cycle depending on them not finding anything. After this second recurrence though, he may be on 6 months for the forseeable future. And yes, they were much smaller when they caught them this way. His first one took too long to diagnose and was as big as the top knuckle of your thumb. The subsequent ones were about 1cm.
Yes, I agree that attitude is a big part of healing and recovery!
Katrina, wife of John