Positive vibes!!

Hi,

The best thing to do right now is to read about it so you get the bigger picture. Doctors will be telling you whatever and if you have the knowledge you will be able to put their comments in better perspective.

In short, glioma is bad, grade 2 is good. They cannot know exactly what it is without sending a piece to the lab for a biopsy and molecular tests. The standard treatment is surgery, if possible, because the brain is delicate and many times they cannot operate or can only go so far. But surgery is best. If the lab comes back as grade 2 they will most likely tell you to leave it alone and monitor it, once every 3 or 6 months. A typical grade 2 grows very little and you sometimes need yearly MRI scans to see any differences. But these "grades" are not cast in stone and everyone's tumour at any time behaves differently. There are no guarantees, for example just because it grew by 5mm the first year (which is normal) it does not mean to say it will do the same next year. Of course you pray it will stay put. many patients therefore spend 5 or 10 years with their grade 2s, it is not uncommon.

After surgery you will recover and the lab will come back with a biospy which you should ask to receive. A good idea would be to ask your GP to become your "hub" of information as all consultants will write to him, and on occasion he can also write to request results etc. The biopsy is crucial because it tells you what you're dealing with. Since at the start you'll be at the hands of the surgeon you should ask him to ask the lab to run all possible tests, this is also crucial.

Surgery is not without side effects either. Depending where the cancer is, how much damage it has already caused and the surgery too, and it may create problems which you will have to deal with. If you are lucky it will be in an operable place and surgery will not harm you.

Because brain surgery is like being a concert pianist on performance, it is prudent that you seek out the best possible neurosurgeon. This is not the time to pussyfoot around people - you really need the best. And you need to read up on them and visit them, and ask them what they are hoping to take out, how much, what problems it will cause and so on. And then go with your instinct. In my experience top surgeons are down to earth and very humble.

Sorry the "5mm" was just a figure it could even be no visible growth at all.

Hi loubs34

I'm new to the forum but I'm not new to the world of having a glioma.

I'm sorry you find yourself in the position of having suddenly find out what all this means. Its a horrible time and so much to take in when you have some much to be concerned about for both yourself and your family. 

Being told to stay positive and try not to worry is sound advice, but really hard to do in the early stages of getting the news. Perhaps I could tell you a bit about not being new to a glioma, and that for me, it became easier to be, if not positive, then less negative?

In June 2013 I woke up in hospital with my husband leaning over me saying, don't worry, its all  ok- you've had a seizure and are in hospital now and its all going to be alright. It was a long tonic-clonic (new name for grand mal) seizure that took a long time to stop. I was there for 11 nights and told that I had a small blood clot. A tumour was ruled out. I took blood thinners for 6 months. After 3 months MRI another scan, then 6 months, then a different one ordered by a neurosurgeon (I'd only been seen by a neurologist up to then). Looking up who this guy was and what he specialised in it became obvious that I had a tumour. It was another two, hard, long weeks  before I got to see him when he confirmed what I'd already worked out myself and told me not to worry about it. Already way too late for that. He said it was grade 1 or 2 but certainly slow growing. It was a hard and horrible time.

Mine is in an operable position, (right parietal lobe) and my options were 'wait and see' with 6 monthly scans, or surgical removal. He was not so keen on biopsy (which could of identified exactly what kind of beastie it was). He also refused to make a recommendation on which option to go for. We did leave it the 6 months and have another scan where there was very little change and again we went through the possible risks of both. Again he refused a recommendation, we then wrote so we could have this in writing and again he said it was 'personal choice'. Not good enough. I wasn't asking him which jacket to buy - I was asking for his medical opinion, based on years of training and experience. If you are contemplating letting someone operate on you're brain you must have complete faith in them. His 'personal choice' options were not acceptable.

Through my GP a got a referral for a second opinion. This neurosurgeon recommended removal. This was November 2014. I had the surgery a week later. I didn't find the surgery itself nearly as bad as the hospital food! I'm happy to tell you about it and my life since then, but what I really wanted to say is that 5 years on I'm still here, and living a fairly normal life. There are some changes I've had to make but things could have been so much worse. That is why I can say that I can see positives. 

On a practical level, think of all the questions you have and write them down. Take this with you when you go to see your neurosurgeon - don't be afraid of getting a notepad out and reading them out. Write down a quick word or two of their answer to help you recall what was said later - there is so much to take in during your meeting you often forget the questions and until later or what the answers were. Be wary of where you look on the internet - there is so much out there that is not relevant, wrong, misleading and just plain depressing. 

I hope you find some support through this forum, and from your medical team.

Kind thoughts

T

Hi

i was told in March 2016 I had a brain tumour and I was terrified. Mine is also on the right parietal lobe. I'd had symptoms since maybe 2011. I was first told probably a low grade glioma. After a couple of scans I was told probably a ganglioglioma. Then in September 2017 I had the symptoms more frequently. A scan was ordered and surgery recommended as no growth but it was more enhanced in one area. . I'd been told inoperable at my first appointment with the neurologist. But was referred to a surgeon who said only just operable at my first appointment. I had the awake craniotomy in October 2017. I was so scared awaiting surgery. But you are so well looked after that the next day I was in Costa having a coffee. Two weeks later I was told it was a diffuse astrocytoma. I was gutted. Read too much on the Internet and this scared me more. Tracy P is so right you can be more positive and definitely less negative BUT it takes time.  

Tracy I'm interested in your symptoms as your tumour was in the same place as mine. I've been left with some numbness in my left leg. A strange sensation that I'm learning to live with. 

Hi EJ54

Initially I presented with the major seizure in 2013 without other symptoms, Post seizure there was nothing new, other than I'd noticed some memory loss. My gp advised this could be as a result of the seizure (we don't know exactly how long it was as we were sleeping when it started but took about an half an hour for paramedics to stop it, and they had a half hour journey to our rural home). As I didn't see a neurosurgeon for 5 months a tumour was not discussed. 

After my first surgery (an asleep/awake craniotomy) I had some visual field loss on my lower left quadrant. I was warned that I could have complete loss on left hand side but it ended up being only a tiny amount. It became most apparent when its was dark or poor light - I could not see the edge of the pavement or steps clearly. It is quiet manageable  - I just use my head/neck to bend slightly - rather than just look down with my eyes. The second surgery  (awake craniotomy) increased the loss, but its still no where near the whole left side, just a bigger, lower margin.

I think that is why I can say you can become more positive. I had expected the worse and loss of left hand side vision. As it is, its more of an inconvenience. It does make me more cautious when its dark but I know I have to be careful with my footing and make adjustments. As you have noticed with your numbness it seems that the brain makes its own adjustments and you get used to the new  feelings, or in my case loses. These days I'm a bit more patient with myself - Not everything is as good as I want it to be, but then again, I'm here writing this so I consider things could be worse. 

Regards

T

Hi loubs34,

your story is very similar to mine. In January 2017 my husband found me in bed having a grand mal seizure. I was unconscious so he phoned an ambulance.

i was put in intensive care for a few days. I had a CT scan which some abnormality. The consultants told my family that I had a stroke. But to cut a long story short it turned out that I had a brain tumour, it was really terrifying. My life had changed in an instant.  All sorts raced through my mind when I had the news. I’m married with my little girl who was 13 months at the time.

It is very terrifying. But we can all get through this with support from our friends and family. 

All my love xx

Hi loubs34,

I have had a very similar thing happen, I keeled over in the downstairs loo on the 7th of October and got carted off to,hospital, they thought I had just had a complicated fainting seizure as nothin showed up on the CT scan they did. So after a month off back to work all was well, third day back at work, felt a bit odd driving home so pulled over to the hard shoulder and woke up 25 minutes later. Back to neurologist, had an MRI scan, then got called in three days later for MRI Scan with contrast, so I knew something wasn’t right. Saw my neurologist a lovely lady called Doctor Stacpoole, who said I’m at present now classed as epileptic so can’t drive, etc and need to take tablets I can’t pronouce twice a day 

I too have a Glioma low grade, named him Cyril as the word tumour was upsetting my younger daughter. Cyril the unwelcome little git is on the left upper side of my brain, so the area that deals with speech and language, etc. So if my spells crap blame Cyril 

I saw surgeon at Addenbrooke’s in the run up to Christmas, they are going to wait to do another MRI Scan in March and then get the melon baller out and operate in April. The way I’m trying to deal with this, as you might have realised reading my post, is with humour, I know none of what we are going through is even remotely funny but if I allow myself to take it all too seriously I’ll end up as a huge sobbing blob in the corner. What I took from the various doctors I’ve spoken to is its low grade, it is still cancer, it is obviously scary, but its low grade. I keep telling myself on my down days, its low grade and could be a hell of a lot worse, the folks that do the surgery are professionals and they do it day in and day out, so they know their stuff. Yes, its easy for my to type try not to worry and I know thats very hard to do, especially when you have a child, talk to friends talk to people, good or bad days, keeping it in won’t help you. I’m a big ‘strong’ 50year old bloke who normally works on building sites, but having a bloody good cry now and again helps bucket loads. Just don’t tell anyone I told you about the crying bit  I wish you all the luck in the world. ️

Hi Martin

Welcome to the club that no-one wants to be a member of, and like you, I too got to join the epileptic club as an added bonus. 

Mine is just a monster who is lodging in the right side parietal lobe. I've not been creative enough to name it but think that is great that you'd adopted Cyril to help your daughter understand that there is something wrong but use a name that does not scare her. I'm not surprised the word tumour scares her - it does everyone. It comes with so many assumptions and presumptions, many of which are far from reality, but who knows that when you fist hear tumour? As you are no doubt finding out there are lots of new words and phrases you're going to be hearing, including low grade and high grade. What was not made clear to me at the beginning was how slowly low grades grow.

I appreciate that everyone is different in how they deal with this. I have the basic approach - face it head on - expect good days and bad and don't try and deny the issue. Enjoy the good and don't feel bad for having the bad days - we all have them, whether we have a Cyril or not. At least you know its normal to have days when you just feel rubbish, that's just how it is. Sometimes we all need the Kleenex. They can be used for the happy events and tears of joy,  as well as the not so good ones, so keep you're hankies close for whenever you might need them.

My pre-Christmas reading was a book I wish I'd read at the start of the road, not one I found out about along several years along the journey. To spread the Christmas joy  as soon as I finished the book my husband read it and found it, as did I, surprisingly uplifting.

Its called' Brain Tumours, living low grade' by Gideon Burrows. I mention this because he was 36 with a young family when he was diagnosed. He shares his experiences of how he dealt with talking about his diagnosis, including the decision on what to tell his children. 

I've also had two rounds with the melon baller as you refer to it. Not quite how I thought of it but the image sums it up. If you want to get back to me on that then feel free to come back to me with any questions. 

Best wishes for now

Tracy

Hi Tracey,

thank you for your kind message it was very sweet of you to take the time, yes I agree just head on is the way to do this. I have been writing a blog over on facebook, which I’ve found immensly helpful in dealing with it all. My surgery will mean they’ll have to wake me up halfway through for a chat which will be a bit ‘odd’ to say the least reading through various posts on here I have more of an idea of whats involved in that. Although, I have spent time researching online and with my neurologist about whats involved, etc.

i tried to transfer my blog posts over to here but it doesn’t allow me to attach or write posts yet on here. thanks for your book recommendation I’ll get a copy once payday comes around.

Thanks again and yes would be good to keep intouch.

cheers martin

Hi Dear friend

I have just had been the procedure in removing a log grade glioma in right front lobe. I have been worried, anxiety, fear to death, but now what I can tell you is that low grade is fairly safe for maybe a long period of time without causing significant damage. it is very slow growing and it takes 20 years to grow just a little inch, so no worry at possibly of sudden growth, not, is not the case.

I waited three month to see how fast it grows, it turned out slow, three months no change, so it was low grade.

I had waited three worry some months before the surgery taken place, I had surgery in February, , a big scar left on top of my head is still healing.after surgery I felt great, there is no side effect on me, and I did not take further treatment of radio or chemo as I have asked other patients who also did not take aggressive treatment at this stage.

the type I have got is not a easy spread one, so it may never come back, or may come back but will still be slow grow type due to they found something that in my gene they can delete each other, so in the worst case it does come back, it will be 7 8 years later as doctor said, by then the new technology will treat it better, even just go through surgery again with radio and chemo for second time, I do not mind, because by then the medicine will be much advanced than now days.

I can assure you if is low grade it really is easy treat and all you need to do just to push you GP doctors to treat it as soon as possible, in my case, I could have choose wait and watch, which is do nothing but keep an eye on it  until it grow big, but I do not want to worry every day in life, so I choose surgery instead.

I am now relaxed and ready on my new journey to find a way to live again after this 6 month, it sound easy but never is when the tumour is in our brain, I know how you feel,  please message me any time you are worried.

All the best

Cleo