This is the first time Ive used this site. My husband has a oligodendroglioma which was removed in January, they think they got it all out but not sure he's due scans every 4 months. He's 29 and we've read that this type often comes back? Does anyone have any idea or know anyone with this type? The doctors said it was grade 2, we dont know any other information. We are both finding it hard we have two small kids and the not knowing what to expect is the worst bit. We dont want to be optimistic if bad news is around the corner!
FormerMember
There are a few "headcases" on here Joanne, at least 3 of us with Oligo's. Mine unfortunately is a grade 3 (originally told 2 but upgraded - the kind of upgrade you hope for on a plane but not in the brain) but there is a fairly new member with the same grade as your hubby.
No point in me telling you to avoid "researching" on the net, I was told the same and did it anyway - to the point of being upset at what I found so eventually stopped.
All the medical profession can do is give us statistics, we are inviduals and thats the way I am approaching my tumour.
I have been lucky (if you can call it that) so far, dx Dec 08 after a massive seizure (of which I have had no more but on tabs just in case), chose my surgery date with the neurosurgeon, surgery on Jan 28th (took longer than expected) up in a chair eating dinner 4 hours after and went home the next day! Radiotherapy was a breeze, lost a lot of hair but no other side-effects (until last week when 5 weeks after RT finished it peaked in my head and caused my brain to swell, steroids have sorted that out). About to start my 2nd cycle of oral chemo.
I am 41, married with 3 children (15, 13 & 10) and believe me I have my moments when I want to just crumble - I have felt healthier since my seizure than I have in years, can't believe its happened and I really am a Brain Tumour Patient sometimes!
I hope you find the support you are looking for on here, you can PM/email me anytime.
Sorry to hear abour your hubby - but as Debs says you are not alone, although it might feel like that at times! My wife has a Grade 2 astrocytoma, although we understood for ~nine years it was an oligo! See my profile for her history, but essentially she had an out-of-the-blue seizure in 1998, had an operation with 99.9% removed in Sept 98 and has then got on with life.
The Grade is the critical issue as it implies speed of tumour growth. My wife's grade 2 astro has taken ten years to regrow (and unfortunately they do always regrow it seems), such that she had radiotherapy last year to knock it back a bit. She is fine in herself and since the original op, we've had two girls (now 6 and 9), she's run the London Marathon, done charity cycle rides and two week ago she went on two day girls sea kayaking trip of Arran! So you and your Hubby can be positive about the future.
As for oligo tumours, they are rarer than astros or Glioblastomas (the really nasty ones), but I don't believe they recur any more than any other type - it all comes down to the Grade. I think most types eventually tend to come back and can "upgrade". But actually from what I've read Oligos are probably preferable to the rest if only because the latest research shows they respond to chemotherapy better and researcher have identified a genetic change relating to oligos which might allow some kind of gene therapy (not sure what that might mean though...!) - maybe watching a Calvin Klein advert...!
Anyway, good luck to you both (it is tough on the partner too) and be positive.
I had a grade 3 oligodendroglioma dubulked (lovely term) September 08 and radiotherapy Nov/Dec 08. I agree with Debs that at times in this process I have never felt healthier, I guess because I have escaped the rat race for a while. My eyes have been white rather than pink and bloodshot from the daily grind.
I guess you are well into treatment now, but I'll say this for the benefit of other readers. Everybody's circumstances are different, but for me I was given the choice of radiotherapy or chemo after surgery. The basic facts I was given to help me make up my mind were that radio would be 90% likely to be effective in delaying recurrence, and chemo 70% The chemo drug on offer was a "lifestyle drug" - no hair loss no nausea, and the radio would cause some hair loss. I felt I wanted to maximise the chances of seeing my teenage children though university and who knows, see a wedding or even a grand child.
After radiotherapy I discovered two material facts that might have swayed my decision in the chemo direction. The surgeon had talked about the 1p/19q deletion genetic markers, but said that it was new and unproven and not necessarily accurate, but having one or both of those markers may indicate an increase in the likelihood of responding well to chemo. I also discovered on attempting to return to work that I seemed to have mild memory issues (attention) that hindered me in returning to my job. It turns out that the histology report after surgery actually discovered that I had both the genetic markers, but I didn't know that at the time of making my decision. Also that the memory issues could to some extent have been predicted.
The good news is that, given the genetic markers, my age (considered young at 47), and the fact that I had a low grade tumour that morphed into a grade 3, I could have up to 10 years before recurrence, at which point I can be treated again; so the odds of seeing a grand child into the world are nowhere near as bad as I had originally thought. I'm just going to try to return to work again, almost a year after radiotherapy -- fingers crossed.
I had read about the genetic marker Ewen but too scared to ask if I had it or not.....as I have had the RT already and nearly ready for the 5th cycle of Temodar..would be crushing to think I've gone through the nausea and brain swelling for nothing!
The statistics I was given were grim.....apart from the fact that mine looked like a low grade on the MRI, surgeon said it looked low grade on removal, original path report came back as a 2 (sep report from a lab in Cambridge were "uncomfortable" calling it a 2)...so maybe mine was just on the turn?!
However, I am NOT a statistic, I too have slight attention problems and short term memory deficits, I also struggle on occasion to find the right word - I know it, just can't access it........VERY frustrating!
I was told that I had age and fitness on my side...so who knows........first MRI in August was clean, no sign of recurrence and brain had moved back into proper position with centre part being straight as opposed to curved from the pressure of the tumour before surgery.
My tumour was 2 x 3cm not sure if thats big or small in the tumour world.....around the size of a Robins egg (which incidently is my fav bird).
