Prognosis - to know or not to know?

Glioblastoma multiforme brain tumour

Glioblastoma multiforme (GBM) is a type of brain tumour. This is a place for people affected by GBM get together, ask questions, share experiences and support each other.

Prognosis - to know or not to know?

No. of entries: 24 | Posted on 11 Dec 2012 11:27

Prognosis - to know or not to know?

  • Hello all!

    Here's a quick summary of my situation. My husband was diagnosed with GBM stage IV in early November 2012 ; mid-November he had successful surgery, and a course of radiotherapy and chemo is due to start soon. As you will understand, our lives have been turned upside down in this very short time, but we are trying to keep as positive as we can and there is lots of love and support from friends and family. 

    So - why the title of this discussion? My husband has, very wisely (and for practical reasons - he's been in and out of hospital for the last few weeks) kept away from the Internet and looking up endless 'information' and has thereby avoiding finding the 'doom and gloom' statistics about GBM!. He has focussed instead on the information from the doctors, making it clear he did not want to know 'prognosis' sort of details. His aim is to focus on one thing at a time - recovery from surgery, regaining physical strength, nutrition, sorting out work matters etc. And he's doing brilliantly so far!

    I, on the other hand, have researched all kinds of things, depressed myself with the 'stats' about GBM, and have also clung on to the long-term survivor 'stories of hope' out there (including Servan-Schreiber's, of course). BUT...... I am wondering if this is the best way to go about things? I have this 'burden' of information about prognosis... but then. that's all it is - information about what has happened in the past to other people with a similar condition. Why would I want to crush his optimism? What would it achieve? There is nothing to stop him finding out more, if he wanted to, and I do respect his way of coping although sometimes feel as if I am hiding something from him, strange as this may sound. Is there a 'best' way to go about things....or are we all just getting through this cancer stuff as best we can?

    Any thoughts welcome, especially if perhaps you have been in a similar situation yourself.

  • I know how you feel, and was in a similar situation. I have put my situation in a discussion about my husbands next round of treatment which seems to be a last resort, which you may have seen. My husbands GBM was diagnosed at the end of May 2012. No prognosis or life expectancy was given by the oncologist as there were too many variations and my husband was at the lower end of the scale being only 51 and very fit for his age. I however looked up everything I could find on the Internet as did his sons. I too carried this doom about with me thinking the average 16 months might be all he had. However once my husband started his radiotherapy and chemo all thoughts like this stopped, as the treatment takes over every waking minute of your life. By the end of his primary treatment he seemed to be coping well, and I let myself hope that he too would be a long term survivor and that 5 years would be the worst case scenario. Throughout everything my husband has always been positive and sure he will get better and fit again, but knew there would be a recurrence at some point years down the line. To cut a long story short this week the oncologist did give a prognosis due to the fact my husbands tumour is still growing, which was 6 months. This has knocked the stuffing out of my husband, although his sons and I were prepared but still shocked, we were able to help him come to terms with this news. Yes it lets you make plans, but it does change everything having this information and a large part of me wishes he had been spared this although I am glad I know. If I were you I would let your husband keep on with his positive outlook as long as possible, as his treatment may have a more beneficial effect than in my husbands case and he may beat the odds against this awful disease. You can't erase what you already know, and later on after my husbands primary treatment I did more research on here and the Internet regarding new drugs and trial, and found it very helpful. I was able to discuss all of it with my husbands oncologist and I felt better that he was so up to date with it all, but obviously saddened that none of it was suitable for my husband, apart from the chloripramine. This may not be the case for your husband, and your research may help in some way down the line. My oncologist this week told me that any of the clinical trials I found out about I could contact the person running them directly for information and they would be happy to supply it, another example of the old phrase "if you don't ask you don't get" I suppose. Don't be burdened with your knowledge, I found it made me feel a bit more in control, and remember that there are positive stories out there too, which hopefully will be your outcome too.
  • Hi Elrick and thank you so much for  your reply - it is helpful for me. I am trying to discreetly manage things so that we are not making any big decisions too far ahead. Your husband's stoicism and humour and spirit will be of great help and I do have a huge trust in our own bodies' ability to sort things out too... and it's interesting what you say about clinical trials. I've been reading about a drug used to help alcoholics which makes the chemo work better - not sure what stage this research is at but it sounds interesting.

    I will be thinking of you and your family with positive thoughts and support.

  • Hi tessa

    I am a few months on from your husband - I was diagnosed with a left frontal lobe GBM IV and operated on in August 2012 and underwent 6 weeks of chemoradiotherapy during October.  I have just finished the first of 6 monthly chemotherapy treatments, which went quite well - I was tired and had to sleep during the day, mild nausea, but nothing too horrible - I am 4 days on from the treatment and I feel as right as rain.

    Like your husband I have focussed on getting well and healthy, primarily so that my body is better equipped to withstand the rigours of chemo and radiation.  So far so good.  

    Unlike your husband I have done lots of research, like you scaring myself silly for a while, then coming to terms with what is, it has to be said, a terrible illness.  

    You know your husband better than probably anyone else.  The question I would ask myself in your situation is:  Is he getting on with the day to day business of fighting the illness - does he know what are the right foods to eat, does he exercise, is he maintaining a positive frame of mind?  

    Or is he actually in denial of what is happening to him?  Is he hiding (or showing) a state of fear, worry, anxiety?  

    If you think the first applies to your husband then I would let him be - he's coping well.  If the second then something might need to be done - fear, stress and anxiety are proven to weaken the immune system and render the body less able to fight the tumour.  What needs to be done is a different question.

    I know that my wife has worried that I am in denial because I have been upbeat and positive about life since the diagnosis - but it's been such a relief to stop having headaches, to know what's going on in my body and finding things that I can do to fight back. Then I have an off day and she is relieved that I am showing signs of distress (weird how things change - used to be my wife worried when I cried!).

    The anticancer book is great.  I'm also ensuring that I do some exercise each day (usually yoga and walking), I've taken to having juices every morning (beetroot, berries, pomegranate, ginger for example),  a teaspoonful of turmeric with black pepper, little or no dairy except for probiotic yoghurt, minimal amounts of red meat (except lean organic stuff), gallons of high quality Sencha green tea (now I have to go to pee in the middle  of each night!), NO sugar or white flour.  All this in response to books such as AntiCancer.  (another good one is Beating Cancer with Nutrition by Patrcik Quillan, though this one is not as brain tumour specific).

    I've also gotten into meditation, which helps calm my mind and keep me present in the moment.

    In any case, I wish you and your husband a calm and happy xmas with a minimum of fuss and bother!

    Simon

  • Hi Simon... thanks for  your reply - I think I've seen posts elsewhere on the forum from you before I joined. I would not say he is denial... just keeping a safe distance from 'the edge' (and the little booklets Macmillan kindly gave us), focussing on health (he has some weakness after the surgery which is not really back to normal yet) and allowing me to run around and fuss over him.

    He's applied for Disabled Living Allowance, and there was a rather tricky moment where they (ie Macmillan staff who were helping to complete the form) were trying to explain that you automatically get the 'care' component of the allowance with 'this type of tumour' (ie because of the unfavourable prognosis!)  but we managed not to dwell on that, and are just grateful that we'll get some funds coming in!

    There is always room to 'ramp things up' on the nutrition front, isn't there.... we do the turmeric & black pepper and the green tea (apparently, Japanese green tea has the max amount of cancer-fighters... is your Sencha japanese?). Trying to cut down on sugar but it seems to be everywhere --- even 'healthy' breakfast cereal----- and getting through more veg and fruit than before. 

    I look forward to hearing how your next rounds of chemo go...  I guess this is the 'gold standard' Temodar or similar?

    All the best to you & all other readers here

    Tessa

  • Hi Tessa-b

    First of all, I am so sorry to hear of your husband's illness and I know the roller coaster of emotions you must be going through. I think your penultimate sentence sums it all up perfectly - we get through this cancer stuff as best we can. I have learnt that there is no such thing as a 'typical' situation with this type of cancer and everyone responds differently even to the same treatment. 

    My husband was diagnosed with GBM Stage 4 in July 2007. He was given the usual prognosis of 1-2 years but has now survived almost five and a half years. For the past year he has become quite weak, needs a wheelchair and his cognitive functions are deteriorating (he finds trouble using the computer, turning on TV, following conversations etc) BUT he is still with us and has the same witty sense of humour. He needs full time care so I had to give up my career but we have found this a very special time together and each day is precious. 

    We had far too much advice from well meaning friends who thought his cancer could be cured or halted by taking up a vegan diet, crystals, special supplements. John recoiled from all this and just wanted to eat what gave him pleasure. For the past 5 years his diet after his chemo (no fish, cheese, eggs, vegetables or salads at all! Lots of red meat, chips and red wine!), would probably shock most people but it certainly hasn't impeded his survival. 

    I do think you have to respect your husband's way of coping although difficult for you I'm sure. To you he may seem 'falsely optimistic' but you honestly never know. My husband was hugely optimistic right from the beginning (although he did know about the prognosis) and to this day he is almost always cheerful and grateful for the life he has. When he was diagnosed we had no grandchildren - now we have 3 with another one due any minute. 

    No one has the 'right answer' to the 'right' way to behave or deal with this. Taking each day as it comes and looking forward to the future with enjoyable things planned seems to help us. We also both have a strong Christian faith which is a significant factor in the way we feel about life and death. 

    I'm not sure if this helps but do remember there are quite a few others who are long term survivors but no-one has heard of them! 

    My thoughts and prayers are with you both.

  • HI Tessa

     

    DLA - I didn't realise I might be eligible for that!  Will look into it.

     

    Green Tea - yes Japanese.

    Sugar - I've been buying Agave Nectar in bulk packs from Amazon - works out a lot cheaper than getting it from the supermarket.  Also been substituting honey and brown sugar instead of white.

    Yes Temodar it is - not too bad as I can take it at home.  I love the way they call it the Gold Standard.  Dammit!  Where's the Platinum Standard? ;-)

    Hope your husband' weakness strengthens up soon.  He's lucky to have a caring wife - make sure you look after yourself as well (I'm sure plenty of people have told you how important it is that the carer looks after themselves equally)...

    Best wishes

    Simon

  • Dear BlossomC - thanks so much for your reply and yes, it is helpful. Sorry to hear  your husband has those symptoms (though sounds like he's doing really great otherwise). I hope it's OK for me to ask-- is his current state of health somehow related to long-term effects of treatment (eg radiation therapy) or the GBM tumour itself? Don't feel you have to go into any detail if you'd rather not..

    Has grandchild No 4 appeared yet?! Congratulations in advance :-)

    Night night!

    T xx

  • Hello.....Well my husband was diagnosed with GBM grade 4 last feb 2012. He had his op....then his radio/chemo and then his 6 months chemo. 4 days after he finished his last treatment we came to Florida for our 5 week holiday that was cancelled last Feb!! He has been quite well for the last 9+ months. His tumour is in his right occipital lobe. He had vision problems before the surgery but I am glad to say all is good with his eyes now.

    Peter is different. He still walks cycles and sometimes runs....however he does not interact as well as he used to. I do not know if this is caused by the tumour or radiotherapy!  He looses his temper with me now and he hardly ever did before. He gets angry if i suggest anything that he does not agree with.

    He hates the fact he has gained weight  on his tummy and face but that is thanks to the dex. He has been on as high as 8 mgs and as low as 1.5...he is on 3 mgs now!

    This is an awful illness.....nobody can tell us what the outcome will be. We hang onto hope everyday. Peter does not do a special diet...he still drinks and does not want to know any info about brain tumours what so ever!! Sometimes I wish he would read a little about the disease but I know after nearly 10 months he won't.

    We are away until next week when we return for a lovely family Christmas.....also our youngest Son has been filming for the BBC junior Doctors our life in their hands to be shown on BBC3 in Feb! We are both excited to see him at work.....It has been extra hard on him being a Junior Doctor and not being able to help his Dad. We are blessed with 2 Sons who are both wonderful.

    Peters next MRI wlll be just after Christmas....the first since April....

    Good luck to all who are travelling on this journey....thank you all for your support...it really helps to know we are not alone....

    Debbie x

     

  • Hi again

    Oh please do ask whatever questions you like and I'll do my best to answer if I can! John's symptoms are due to two main causes:

    a) his recurring fungal infections, septicemia, urine infections etc are due to his immune system slowly weakening. Apparently this type of brain cancer cannot be totally eradicated from the brain and some cells remain, with the cancer in remission (as it were). The immune system continues to fight the cancer and so becomes weaker. I'm sorry this sounds like 'brain cancer for complete dummies' but our doctor (who has been amazing) explained it like this to me and it makes sense of our situation - but everyone is different. John is also becoming increasingly resistant to anti-biotics.

    b) you're right, the radiotherapy was the maximum level for the maximum amount of time (every day for 6 weeks) and continues to destroy the brain. We were never told about the long term effects by the oncologist, as John was only expected to live for 1-2 years. Our neuro surgeon has said that the damage will continue slowly and it is exactly like a speeded up aging process. John's brain has shrunk and is like that of a 90 year old (he is 65). So like any 90 year old he has problems with mobility, incontinence, memory, cognitive function. Luckily we see no signs of dementia.

    If we had been told of the long term effects would we have still had the treatment?  Absolutely YES!! John says he has a really good quality of life, enjoys listening to his audible books and seeing the ever increasing family! He would have never seen any of his grandchildren if we had refused treatment. 

    Talking of grandchildren - thank you for asking about the new baby boy. Five days late now but all looks good. Induction booked for 21st Dec if he hasn't decided to arrive by then.

    Having re-read the above - I hope it doesn't all sound too gloomy. If you take one day at a time and just deal with whatever arises at the time, and look forward with hope and optimism, it's all do-able even if you may need a good sob in the bathroom every now and then.......and you definitely need the support of loving family and friends. This experience has certainly sorted out who are our true friends!

  • Hi.

    There is a book called Living with a brain tumour by Dr. Peter Black.

    It was true in every point raised from the beginning to the end of what my son went through, you can get it on  Amazon.

    I wish you all well.

    xxxxxxxxxxxxxxxxxx

  • Hiya Tessa

    Came across your post and the first paragraph was like I was reading what had happened to us. 

    My husband was taken ill on 2 November, had surgery on 7 November (debaulking) and started his chemo-radiotherapy on 10 December which is for six weeks.  So we are now on the daily grind of hospital visits which take up most of our days.  However, the weekend feels wonderful as we don't have to go anywhere so can just chill.

    When he was first diagnosed, we were told by the Neurosurgeon ... we aim to get him to six months....   Our daughters, we have two aged 24 and 26, and myself felt that our world had been crushed.   Subsequently when we saw the Oncologist he was more positive and said the average was 18 months with some people lasting much longer .. five years, and that he is young (55) and fit. This gave us more hope.

    I wanted to have a better understanding of the condition and did look things up on the internet, making sure I kept to sites such as MacMillan but found them too hard to read and found I could not cope.  As time has passed I have found I can read things now and I have taken great comfort in reading some of the posts.  The bottom line, to my understanding, is that everyone is different and it is difficult to predict how people react and how the disease will progress.  My husband is fully aware of the diagnosis and prognosis, though has not looked anything up on the internet or read anything about the condition.  Its not that he is in denial, just that he does not want to read about it. 

    I do not think there is a standard 'best' way to deal with things, that you can only deal with things the best way you feel.  For you it is researching things and for your husband it is not.  As you say he could find out information if he wanted to, and perhaps if he did look into it more he would not be able to cope so its best left alone until/if he feels able to cope with it. Sadly its a burden of knowledge that you have to carry :( which is horrible.

    We have found people to be very kind and have been lucky to have had a lot of support,  The MacMillan team has been amazing, helping us with sorting out benefits, blue badge for the car and even advising on carers benefit for me.

    We have good days where it feels that there is nothing wrong, and bad days when it seems so bleak and we cry a lot but the awful saying .. life goes on ... is so very true,  so we are just taking each day at a time.  At time is passing we are finding the bad days are less, with the good days being more.  We are acutely aware that we are in the early stages, but we are taking delight in being able to spend more time together and if it were not for this horrible disease life would be perfect.   

  • Thanks all for your thoughts and replies and good to hear your shared stories. I am off now to make another cup of green tea (the Sencha is ordered and on its way, Simon.....only the best Japanese tea for us from now on!) and to get those sprouts ready for tea!

    Hope you all have a good weekend....

  • Well, we've just finished a week of solid hospital appointments for having the radiotherapy mask made, CT scan and MRI scans for 'treatment planning'. Nothing next week, which is great, and the actual treatments will begin in the new year.  The drive home from the hospital this tea-time in the rain and in rush-hour traffic was a bit stressful ....especially as I am now the only driver, with my partner in the role of 'anxious passenger' :-(

    Seasonal cards from friends and relatives are suggesting that we 'Have a Relaxing Christmas' - I hope we can manage that somehow, and that no more symptoms show themselves before we've had chance to get the treatment started.

    Wishing everyone all the best...

    T x

  • Hi my name is Lara and my partner was also diagnosed with GBM grade 4 on the 9th Novemember he was operated on 11th Novemember and 3weeks ago started raidiation and chemo. Today he started to be really poorly and im not sure how iam going to cope.

    Iam always trying to br upbeat and positive around him. But sometimes it gets on top especially when hes not having a good day and he has problems with his memory its like the lights on but nobodies home and i may as well talk to myself.

    At first i refused to read up about it as its all doom and gloom but we were told right from the start how long he would approx have. Only time will tell how long we get to have together as it seems anything from 12months to 5 years.

    I would really like to chat to yourself and others who are in the same situation