Grade 2 Oligodendroglioma - Need info!

aquasonix

Hi

I've discovered this website like most people I imagine, in a time of crisis and confusion. A month ago my wife received the news that turned our life upside down - that an MRI scan showed a large lesion in the back of her brain thought to be a tumour. This was not what she was expecting as she is a fit 32 year old and had no symptoms other than she occasionally passed out at the end of her hour long treadmill sessions.

Two weeks later she had surgery that removed 90% of the tumour that turned out to be a Grade II Oligdendroglioma that occupied a quarter of the brain mass. The nuerosurgeon I feel was being deliberately optimtimstic when she said the remaining growth ‘may not come back’ and ‘her chances of long-term survival are excellent’ to try and placate her feelings at this fragile stage.

Going home with no further info, I have trawled the net to try and understand how long ‘long-term’ is and I’m totally confused. Wikipedia gives quite a gloomy account of what she has and says her absolute maximum life expectancy is 15 years and yet I have read a lot about a report by Olson (whoever he is) who said the median survival rate in his study was 16.7 years. Now I know which figures I prefer to believe, but as much as I want to be optimistic there is no point at burying you head in the sand and I just want to find out the facts and face them - no matter how harsh.

If anyone can provide me with any further info on this or share their experiences of recovering from such an operation (the surgeon said this will probably take 6-8 months) I would love to here from you as I feel quite lonely right now.

Thanks

Al
_________________
'If you are going through hell, keep going.' (Winston Churchill)

brainman

Hi Al,
I do not have a specific answer for you. I can only remind you that the statistings are just that... statistics. If it is true that "most" people have 15 years, some still have more than 15 years. Second, and more specific, ask the doctors. Be clear with your question and desire to know the truth.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Sammict

Hi Al,

I'm so sorry to hear your news, my heart goes out to you and your wife.
How is she doing? Is she going through treatment?

Unfortunately, Brain Tumors are very underfunded which results in there not being a hell of a lot of information out there, and what is out there is often conflicting or out of date. I know this because I've been researching for an article I'm writing (and pulling my hair out in the process!). I've been amazed to discover that Brain Tumours have now surpassed Leukemia and become the No 1 cause of cancer death in children in several countries including the USA & Australia (No 2 in the UK), and yet no-one knows about it...

You may be able to get some info on your wife's tumour from the following places - I recently spoke to the Samantha Dickson Brain Tumour Trust in the UK who have a wealth of information and are very lovely people, their phone number is: 0845 130 9733.

Another one is http://www.cancerhelp.org.uk/help/default.asp?page=5005 and www.braintumouruk.org.uk

The US seem to have a lot more info, try www.abta.org or www.cancer.gov

The International Brain Tumour Alliance also have links to sites worldwide www.theibta.org

Hope this helps and don't worry, you are not alone, everyone here has been or is going through the terrible emotions that can be caused by Brain Tumours.

I know this is devastating but you must try to stay positive. I don't think your surgeon would be giving out misleading information, they are usually pretty straight with you about these things, they can't afford to be otherwise.

Al, I don't mean in any way whatsoever to take away from your pain at all, so please don't take this the wrong way, but I wish my Dad's surgeon had told us 15yrs instead of 6 months... he passed away 4 months after diagnosis from Glioblastoma Multiforme, he was only 58.

If they're telling you 15 years, hang on to that, just think of how much can change in that time... Twenty years ago any child diagnosed with Leukemia had pretty much 0% chance of survival, now they have 90% survival rate thanks to research and technology. There is always hope Al, especially when you have time on your side, so don't ever give up!

Enjoy every day, take care of yourself and keep talking to us.
Wishing you and your family all the best.
Sam

aquasonix

Thank you Jim and Sam for your replies, they certainly provide a brighter perspective to this seemingly bleak situation.

My wife (Clare) is not due to see the Oncologist until next month and I guess then we'll get some answers. I have know idea what she'll say, my guess is she'll suggest the 'wait and see' approach as from what I have read there's no benefit from early radiotherapy and I don't think Chemo is prescribed for non malignant tumours. Having said that, I do wonder though if she has the 1p 19q chromosome deletion thing whether they might want to hit it with Temodal and wipe out the remaining 10% but I guess that's uninformed wishful thinking. Like you say, finding out detailed information on this subject is very hit or miss and any info you do come across is often untrustworthy, unclear or contradictory.

Its been a month since the op now and Clare is still recovering and can't read or write properly, has lost the peripheral vision in her right eye and is in general terms still extremely delicate. She is improving slowly and the neurosurgeon said all this will take 6-8 months to heal as it was quite a brutal operation but expects everything to resolve itself in the end - I hope she's right.

This is the strange thing that 6 weeks ago everything was fine and we were the happiest people on earth bringing up our one year old son and everything was working out perfectly. I can't help thinking that was the problem, that not many people get away with leading perfect lives and something like this was bound to happen. Even now I can't really take it all in and am still in a state of denial, despite all her current symptoms she doesn't act or sound ill and I can't look at her and believe her days are numbered. Maybe denial is how people get through.

I'm sorry to hear about your father Sam, I lost my mother to Lung Cancer last year and seeing her in the hospice going through her own living nightmare, knowing what lied ahead and gradually losing her grip of life was unbearable - to think one day I will be seeing my wife go through the same makes me sick to the stomach. At least my mother managed to bring up both her kids, was happily married for 50 years and had one hell of a life, she beat Breast Cancer 18 years ago and so had a lot to be grateful for reaching 74. I'm sure for you Sam the shock of losing your father at 58 hit you quite hard because you just don't see it coming and when it does it all seems so unfair. Hopefully now your beginning to come to terms with what has happened and are moving forward. I don't know if it helps but I find it a consolation that parents live on through their children and even if they're not around, as long has they have influenced you with their values and way of thinking in your life then they have not died.

I better stop now because I'm rambling I notice.

Thanks again and I'll keep you updated.

Al.
_________________
'If you are going through hell, keep going.' (Winston Churchill)

PghBrain

Hi Al,

I am so sorry to hear about your wife and I hope that you and your family are coping well and staying strong. I have been visiting this site for over a year now since being diagnosed with a brain tumor, but this is my first post. When I read about your wife it struck a chord as it sounds exactly like my story. I hope sharing my experience helps in some way.

I am a healthy, active, female that was diagnosed with a Grade 2 Oligodendroglioma last year, one day before my 27th birthday. I had been having some mild headaches that I thought were migrains and also some spells that would occur while I was running. After a particularly bad night, I went to the doctor and a CT scan showed a tumor the size of a lemon on my temporal lobe. I was admitted immediately for surgery. Doctor's were able to remove 75% of my tumor and my PETscan showed no malignant cells, just as your wife. We had discussed a 'wait and see' method, and I was told the same thing you were about the cells "might not grow back". But because I am so young, the doctors thought it might be best to treat the cells more agressively now, while my body can respond better. Although we originally thought that the chemo (Temodar) treatment would be recommended, the genetic testing showed my tumor didn't respond to chemo. My doctor recommended a 5 week course of radiation therapy to treat the rest of the cells.

Like you and your wife, I was scared and confused and was searching the internet for any information I could find. One thing I did come to realize was how scary the statistics are. I remember coming across the same life expectancy stat you noted (about 16 years) and thought I might never live to see 40. But Al, try to stay away from the internet and stick to what the doctors say. Also remember that the average statistics are based on the average age of diagnosis, which is well above 30.

So here I am, 13 months past my surgery and 9 months past my last radiation treatment. Physically, I'm feeling like myself again and please tell your wife that is does take a long time to heal and regain strength, but it will come. I really feel that healing emotionally is harder than physically. It is scary and I know I have to live with this for the rest of my life, but I have met so and talked with so many inspring people over the past year, that I have become a believer in survival.

I wish you all the best,
Adriane

aquasonix

Thanks Adriane,

I'm really glad you decided to write your post and share your experience as its made a big difference to my wife and I to hear from someone who has faced this same distressful situation and come through it all and who's life has now returned to what you might describe as 'normal'. I think that's what we both crave now, is that once all this healing and treatment is out of the way, that things may someway return to normal again. Maybe we may never sleep as sound as we did before this thing was discovered but if we could just push it to the back of our minds and get on with things like we used to then, compared with other less fortunate people who have told their stories on this forum, we should be learn to be grateful. I agree with what you say that its not just the physical healing that has to take place, the far greater challenge is coping emotionally with what you've got. This is whole new territory and I just don't know how well we will be able to ignore this black cloud that seems to be now ever present in everything we do, although by the sound of things you seem to have made good progress.

Like you say, surfing the internet for statistics is quite scary and probably not the best way to try and to conduct a DIY prognosis, but I was just trying to get this condition in to perspective and still I'm not sure I'm any the wiser. Actually, I'd say that for every scary site I've come across I have found an equal amount that give a more optimistic forecast and so I have made sure to book mark those and forget the others. I keep thinking that 16.7 years is not a bad [b]median[/b] figure, as this is the mid range life expectancy and given the recent developments in MRI scanners, new chemo drugs, Radiotherapy techniques and precision surgical techniques in the last decade, I can only think this figure will keep increasing year on year. Also from what I have read people like yourself and my wife stand the best chance of beating those odds with age being the most relevant factor and I've read plenty to suggest that and I quote 'Recurrence-free survival is relatively good even in malignant forms (i.e. anaplastic) with the combination of surgery, chemotherapy and radiotherapy'.

Another big thing that gives me hope is reading about the large clinical trial of Gene Therapy which is being conducted by Glasgow University which is looking very promising and could well become the wonder cure for Gliomas - I have spoken to someone who knows a bit about this and he informs me the underlying fact is this technique does definitely work but there is a lot a research still to be conducted before it can become a recognized licensed treatment - but its good to know there's hope around the corner.

Its getting late, I better go now. If you ever feel like getting in touch I have put my email down on my profile, I'd love for you to keep me updated on how you're doing, its up to you.

Thanks again and all the best,

Al.
_________________
'If you are going through hell, keep going.' (Winston Churchill)

Rox

Hello Al,

Like you I am posting as a new member. Your situation hit close to home with me as my Dh (dear husband) has a grade 11 oligodendroglioma in his right frontal lobe. We have 2 boys ( 2 and 4).
I have the same questions as you relating to the prognosis with this tumor. I have come to the conclusion that no one has the answer, that this is ulitmately in God's hands and we just have to take each day one by one with focus on our blessings. These things are joy stealers and we must not allow it to ruin the good times we have ahead of us.
DH ( 37 )had his 1st surgery 4 years ago. We had a 5 month-old then. The Dr.s told him if you have to have a brain tumor, this is the best one to have. He is now going to have his 2nd surgery next week to remove regrowth. I have confidence that this surgery will gain him another quality 5 years or more. We cannot control this, all we can do is give our loved one support and the best medical treatment we can find.
When I think of our future, what breaks my heart is my boys and how this thing will impact them. I am grown, I can understnd. But what will this do to them?
My strength comes from prayer and faith that God has the best for my family even when we can't comprehend how this can be for good.
Just know that others understand how you feel and you are not alone.

3coffeebeans · New User Joined: 21 Feb 2007 Posts: 4

Hi,

I know it's been a while since you posted this so I hope that things have turned out alright. I also have an oligodendroglioma. It's amazing how it can be so different for everyone who has one. Just fyi this link should take you to brain trust. http://www.braintrust.org/othergroups.htm and they have a message board just for those of us dealing with this type of tumor. If you don't find it there go to the home page...on the top online support groups and they have a smaller group in blue or something that will take you to a list and towards the bottom is oligodendroglioma. They are an active group of people who really look into research...offer support and some have been going through this for a while so they know the ins and outs of this. They even help with symptoms. Try them if you haven't already found them. I think they are a great group of people and have just been dx myself 12/06 they have taught me a lot! Good luck and hope all is well.

Julie · New User Joined: 02 Apr 2007 Posts: 3 Location: UK

I like may others have stumbed across this website and felt that I should post a comment based on Al's story and statistics. My husband also has an oligodendraglioma tumour in the left frontal/temporal region of the brain. So much for these tumours being rare! Our history is as follows;-diagnosis was in April 05 and surgery removed 95% of the tumour (orange size) it was initailly thought to be grade II non-analplastic. Luckily my husband was able to continue working, in Nov 05 he suffered his first grand mal seizure, in Jan 06 he started radiotherapy however a recent scan has shown signs of regrowth again and so he has just now started taking Temodal. The tumour has since been classified as a grade III anaplastic type. Like many of the comments I have read we too have young children my husband is now 37 and I too feel that age and fitness etc is on our side. My husband has never been interested in statistics and I feel that this is definately the way to be. Who knows what could happen to any one of us in the next 5,10,15 or 20 years! I have gone through more emotions than I would care to mention and I am now looking down the alternative therapy route. I have heard many conflicting reports and am trying to look at various research at the moment. If anyone has any comments on this please feel free to email me. I wonder if there is something in this radiation and geopathic stress. It has been suggested to us that we remove cordless phones, radios, mobile phones, stereos, digital alarm clocks and TV's left on standby from our bedroom, I have to say that in our home we had all of the above next to and directly below my husbands head. I have also been told that underground streams may also contribute and I believe we have this too. Just thought I would throw this in in case anyone else had been thinking along these lines.

Most important part is that we are all positive I know he will be fine in the end I just have to stay focused and do all I can to help the situation.

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