Grade 2 - Oligodendroglioma

FormerMember
FormerMember
  • 19 replies
  • 34 subscribers
  • 62935 views

My husband was first diagnosed in 2006 with a oligodendroglioma in the right frontal lope at the age of 38, he had de-bulking surgery to remove some of the tumour but a 6cm tumour stills remains.  He has been having 6 monthly MRI scans and until August 2009 it showed no change.  We seen 2 different oncologists and they were both of the option the tumour was changing grade. 

Andrew under went a biopsy in September of this year and the results showed the tumour still to be grade 2.  Both the oncologists are still of the opinion the tumour is changing.  The difficult decision we need to make is if to have radiotheraphy now or wait until the tumour shows signs of changing again.

I'd like to hear from anyone who can relate to our situation.  This is the first time I've turned to the internet as we really don't know what decision to make and the oncologists would commit either.

Many thanks

 

 

  • HI Lizzy, my hubby has an Oligo grade 2 as well.  He was diagnosed in  2008 after having seizures.

    We are not in quite the same situation but I do remember that our Consultant a Dr Sharpe said that radiotherapy should be used at a later date and not now as it can only be used once, he did say that radiotherapy can cause defecits in the brain which we could really do without (the tumor causes difficulties in the language and comprehension areas of the brain, its on his left side).

    Hubby has just gone through 7 cycles of Chemo to shrink the tumor and hopefully improve his quality of life and life expectency. 

    Sorry I cant add anything else useful.

  • FormerMember
    FormerMember in reply to Gizzy

    Hi Lizzy,

    This coming Friday will mark the 1st year anniversary of my tonic clonic seizure which lead to my brain tumour diagnosis - it will also be the day I finish 6 months of chemo.

    I had a total resection from my right frontal lobe and have had no other seizures since that first one.  After surgery I was told on a Friday that I had a grade II Oligo but being referred to the oncologist as a matter of procedure.  On Tuesday I saw the oncoligst and she told me another path report had thrown up discrepancies and that they were "uncomfortable calling it a grade II" and I was reclassified as having an "Anaplastic Grade III Oligodendroglioma".  However the tumour looked like a low grade on the MRI's, my neuro-surgeon felt it was low grade when he removed it and initial path report was low grade.  She explained it could have been on the turn and that its best to treat me as if it were the more aggressive type.

    I have been through 33 sessions of radiotherapy and have started my 5th cycle of Temodar (TMZ) today.

    Good luck to your husband.

     

  • FormerMember
    FormerMember in reply to Gizzy

    Gizzy

    Thanks for getting in touch.  My husband is really thinking about not having the radiotherapy at the moment with it being a one off.  The oncologist rung me on Friday to see if he has made a decision and I asked about the research he had been quoting which was into low grade tumours, and not into Oligo's so they really don't know which way to advise.  We'd been told chemo would be after Radio for Andrew they all seem to vary so much in opinions.  We've actually seen 2 different oncologists and basically they both said the same.  I was in touch with the Surgeons sec today and she asked if we wanted him to phone to discuss the radiotherpay but Andrew just doesn't know if he wants to discuss it any more.

    Hope the Chemo works for your Hubby and let me know how it goes.

    Take care

     

     

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Debs

    I know what you mean the MRI scan they were convicted the tumour had changed grade and the biopsy shown it hadn't as was the case for you. 

    When you were offered radio and chemo did they give you the choice to make the decision on the best treatment.  The difficult decision we have is they are saying to Andrew is that even if he has treatment there is no proof it prolongs life expectancy and he has to make the decision of treatment or to continue to scan and monitor.

    I bet you can't wait for Friday.  So when will your next scan be.

    Keep in touch and let me know how you get on, best wishes

     

     

     

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Lizzy,

    I was told to have the radiotherapy straight away but I could make a decision on the chemo after RT had finished.

    I based my decision on the fact that so far, I have no neural side-effects, no seizures, no weakness - I do suffer with short term memory deficits and the brain surgery and RT did slightly worsen it - I am getting better each month but occassionally struggle for the right word (could be my age too at 42 lol).  So in my eyes, I am the healthiest I am ever gonna be right now - so I would probably tolerate the RT and chemo much better than further down the line when I didn't feel so good.

    There are photos on my profile of me in my beautiful lilac mask and me in the mask laying on the LINAC machine, if you are curious.

    Good luck with your decision, I too was told that this treatment would NOT affect my prognosis (which is kinda crap enough as it is - but hey we are NOT statistics right) but it would give me a longer time progression free.  The idea of having a longer time being fit and able was enough to risk the treatment on.

    I can tell you about my RT experience and chemo if you like and am happy to add you as a friend and do this via private messaging.

     

  • FormerMember
    FormerMember

    Hi Lizzy,

    I wouldn't want to offer any advice because from what I've learnt from this most dreadful disease is that everyone is different and even if people have the same tumor type, where it is and what can be done to help is different for everyone and not always in the same order. I can only tell you what has happened to my mum and hope that it gives you a bit more information.

    My mum was diagnosed back in '98 (my mum was 41) with a grade II oligodendroglioma. At the time she had one seizure, was referred to a neurologist after a CT where she was told she had a 'legion' on the brain (or a cyst) and that there might be a tumor within it. They could only tell if they did a biopsy. Mum didn't want to do anything and the consultant advised a 'watch and wait' course for the future. She was fine until 2002 when she had several seizures in a short space of time, it was after this that she decided to have the biopsy and diagnosed with the oligo grade II.  She had though had 4 good years without any treatment.

    My mum's consultant advised that due to where my mum's tumor was and that it was slow growing, that he didn't think surgery was the best idea to start with. They advised radiotherapy (this was 6 years ago though) as they hoped it would pro-long a good quality of life. It did. Mum had a further 6 years (up until Feb this year) of nearly-normal life (I say 'nearly' because she did have some short term memory problems). Mum from what I've read was therefore lucky to have had not just the 4 previous years, but a further 6 post radiotherapy. Even then it was a 'watch and wait' scenario.

    Unfortunately my mum was obviously getting worse from mid-end of last year, and was admitted to hospital in feb this year. At this point they weren't sure if the tumor had changed type, but they suggested chemo (PCV). The oncologist thinks this worked quite well for the first couple of months, but unfortunately after that the tumor became aggresive. The only option available then was de-bulking. This was undertaken with a view to having temadol post-surgery but the tumor has progressed too much to consider this now. Mum is in a hospice near us being treated amazingly well, I won't go into details of what is happening, but the tumor did change and is no-longer a pure oligo.

    Mum never regretted the advice she was given, the consultant has been brilliant and always let mum be mum and the treatment she has had has worked for her. Maybe we are luckier in that the consultant has known mum for a number of years and understands her. I'm not sure. Even though things haven't gone as well as hoped over the last couple of months, we know that everything that was done was right for mum and that she had 11 good years with an excellent quality of life for such a hideous disease.

    I read that your husband started with a de-bulk and is now being offered radiotherapy with the potential for chemo later. We were told that temadol (sorry can't remember how to spell that) works well but for mum that was to be the last resort. From what I've read depending on where the tumor is in the brain and whether it can be accessed easily different courses of treatment are given to different people.

    If I could give you any advice it would be to ask your oncologist more questions to try and clarify some things. i.e what are the benefits of radio now and then chemo when it changes. If it changes will it be chemo respondant? What are the side effects of radio now or chemo? are there any stats about the effects of radiotherapy vs those of chemo? What type of chemo would it be? (i.e. pcv or temadol?)... Is your husband likely to be offered further debulking at a later stage? We were told that chemo post-surgery is more effective than pre-surgery (where possible) because the tumor is smaller etc. I think what I would do if it were me is to find out what can offer the best quality of life and for the longest amount of time. That has been a blessing to us and I hope it will be for you.

    Sincerely, the tiddler.

     

  • FormerMember
    FormerMember in reply to FormerMember

    Hi all, thanks to you all for your posts, they help others in the same position.  My husband has a grade 2 oligo, he was diagnosed on 2nd June, had an agressive debulking on 9th June and we were told on Christmas Eve that the tumour that they could not get has begun to grow into the space and that he needs further surgery, then chemo and radio.  We have been in shock.  I think I am taking it the hardest.  My hubby is a nurse and has been doing a lot of research on treatments etc and can tell you about some good research articles.  Yes you are correct about radio and we are wondering if that is the best thing yet and would prefer to have the chemo after surgery  and then to wait and see.  I just hate the waiting and this illness, it is so scary how it affects people and just how many people it does affect.  I am so lucky in comparison to others, my husband is only just 40 and has good health.  We are going to fight this as much as possible.  I think forums like this are fantastic, as those of us that are caring for people often feel that we have to be the strong ones and it is often difficult to not breakdown in front of your loved one.  My husband is a hero, he has not once faltered.  My prayers are with you all.

  • FormerMember
    FormerMember in reply to FormerMember

    I can totally sympahise with your situation, I put the original posting on having whether to have radiotheraphy now or later.  My husband just couldn't come to a decision as it's only once and he didn't want to use a 'life line' before he really needed it.  My husband was first diagnosed in 2006 and I became friends with the surgeons sec (it's unbelievable but her husband had a brain tumour many years ago but they were able to remove it all) so she understands the stress we are going through.  Anyway because Andrew is now under the oncologist rather than the surgeon, the Surgeons sec wanted me to keep in touch and wanted to know how things were going.  Anyway I told her we were struggling to come to a decision re radiotheraphy and she said would we like to speak with the surgeon, because we trust and respect him so much we valued his opinion and he said not to rush into a decision perhaps we just need time and that any treatment has side effects and if he was in our situation he wouldn't have radiotheraphy as this present time. So Andrew it's having it at the moment. 

    He is now suffering from depression which is quite understandable and the GP prescribed some medication but after just 1 tablet he had some really awful side effects so hasn't taken any more.  He also starts counselling tomorrow so we'll have to see how this goes as he just doesn't like really talk about the tumour or treatment.  I would be interested in the research on treatments your husband has done, both the kamma knife and the proton beam theraphy aren't suitable for my husband but perhaps they will be for yours.

    We are now just 2/3 weeks from the next scan and feeling really neurous already.  In September 09 when Andrew was told the enhancement to his tumour had altered from a grade 2 to a 3 or 4 and the biospy showed it hadn't (it was still 2) we put this blessing down to prayer and continue to do so and that a cure will be found for this horrible disease.  My husband is really strong and is determined to bet this and when I say 'why you' he says 'why not me'.

    When is your husband back in for more surgery?  My thoughts and prayers are with you, take care Liz

     

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Liz, thanks so much for taking the time to write back.  My husband has the links to the journals on his laptop, so will chase this up and let you know.  How old is your husband?  Mine is only just 40.  There are some quite positive articles and have your read the Anti Cancer book.  I have just got that and have not been able to put it down.  The author is a doctor of research and a doctor and also have a brain tumour.  The research evidence makes sense and I am going to try to reform our diet.  Even if it is a load of rubbish, at least we will be healthier and it is something that I can at least control for once.  For me, a total control freak that has been the worst part of this.  I have so much sympathy re the depression, I suffer from that and have begun to have counselling.  I am looking at CBT, that might help and I have some different thought process worksheets etc if you want them for him, if you message your e-mail, i can send them and anything else that is useful.  i cannot believe how strong they are, he is much more together than I am.  Why not me is such a brave way of looking at it.  I have found it so useful to talk to somebody like you.  People are so kind but you do get tired of the , Russel Watson has a a brain tumour and look at him and then having to go into the different types etc.  Well meaning but exhausting at times.  We are just starting on the next journey, basically we got the news on christmas Eve.  He is having his 40th birthday party on Friday and then we are in on Monday for debulking on tuesday 19th.  I guess the surgery is now the known quanitity.  Then it is the chemo talk.  Can I ask if you hubby had that and which treatment he had?  We are going armed with as much info as possible to get the best possible outcome.  There are days when I think of the positive and all of the good things that he has going for him and then other days, like the past few I go to pieces again.  We have a 9 year old, so it is important to try to be as normal as possible.  They still think that is is a grade 2 but will not know until the hystology comes back.  I am thinking of you for the next scan.  I was on anitidepressants and to be honest am refusing to take them ever again, they mess with your system, make you feel like flu like and then coming off them is a nightmare.

    I have always supported cancer charities and tried to understand what others go through.  I think it is only sitting in the hospital, waiting for MRI results etc that you truly start to realise the sense of panic and helplessness.  My thoughts and prayers are with you, will light a candle and pray at the weekend for us all to come through this.  Prayer is strong and it will continue to get me through the next few months.  Please let me know how you get along with the scan.

    Best wishes,

    Joanne

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Joanne

     

    Well we've certainly got an AWFUL lot in common my husband is 41 (diagnosed at 37) and we also have a 9 year old child, he is the one who keeps us going through all this.  Since my earlier reply today we now have a date for the scan 28th Jan.  If your husband is any thing like mine he will certainly enjoy his birthday.  When Andrew was first diagnosed we had a cruise booked to the carribean and he wanted to go as our son was looking forward to it and Andrew believed it could have been his last holiday, so another scan was done a couple of days before we were due to go and the tumour hadn't changed so off we went and he spent his birthday in Barbados.  I just wanted to cancel but I just went along with Andrews wishes, and then in for de-bulking when we returned.  It's a good sign it they still think it a grade 2.  Andrew has had surgery twice now and I was so much calmer the second time, I really hope it's the same for you, you sort of know what to expect and how long you think they will be in surgery etc.  I've not gone down the anti depressant route or counselling yet but I'm sure at some point I'll start with the counselling.

    I too have supported a cancer charity for along time.  I'll pray for you too in the morning (weather permitting the ice has been terrible, so I hope we can get there)

    we've been changing things with the diet pomegranite juice, fish - sardines, mackrel, etc baked beans it just can't do any harm.  I recently read Russell Watson autobiography and perhaps I shouldn't, I could just relate to so much that he said and the emotion, when I finished the book I just cried.  But there again I can cry at anything at the moment!

    Knowing and being in touch with other people in the same position as me really does help.  I really hope the surgery goes well.  My thoughts and prayers really will be with your family.

    I've sent a  request for you to be a friend and we can then e-mail without posting on the web-site as I don't want to post my e-mail address on here.

    Take care and enjoy the party

    Best wishes

    Liz