Brain tumours

For people affected by brain tumours or brain cancer to get together, ask questions, share experiences and support each other

Low grade tumour and questions...

KittehFran
Posted by

Hey there!

Hope this is going into the right place

My name is Fran, I'm 26 and I'm a Med student.

I was diagnosed with a low grade tumour brain tumour in the left (my dominant) temporal/frontal lobe just above the speech area in Summer 2010 after presenting to my GP with a change in migraine severity and frequency and also new (and rather interesting) speech auras (which have also been queried as Simple Partial Seizures)

The original scan put a diagnosis of ?DNET (an embryological tumour) but that was changed to include the differential of a low grade Glioma. The tumour is non ring-enhancing with contrast, which is excellent. And the rescan in December showed now change in the 6 months, which is also great.

However, my auras are still incredibly persistent and I am now also experiencing some "Phantom smells" which are so bad they wake me up as I am drifting off to sleep, and there is now a question wether this is also a seizure pattern. I am already on toperimate for my migraines, 100mg/day so that is looking to maybe be increased if this continues to be a problem.

I saw the Neurosurgeon last week and it has now been put to me that I would need a biopsy "at some point" as no scan will tell me 100% what the tumour is. And if it is a glioma, there is evidence to say in someone my age that it should be removed and treated with radiotherapy NOW rather than waiting, as some of these tumours have a habit of going "nasty". And as I am planning a family in the next 3-4 years I do not want to risk that happening during .e.g pregnancy as I know especially during that time hormones can do strange things to existing tumours and problems or when I have young children. So I am looking into getting the biopsy done in the summer, after my finals exams but before I start work in August.

So thats the story, here's some questions

1. What are peoples experience of a biopsy? How long is the hospital stay?

2. what do they do to prep the area? I.e. hair cutting? I only ask as I have VERY long, thick wavy hair and this is something that I do worry about a little bit, which is stupid of me... :(

3. How long are you "off your feet" for after the surgery?

I have "text book" answers but was looking for genuine experiences from people rather than statistics and numbers as they are not always correct.

I have also come here because I am hoping to find some support... I am finding it difficult to know how to deal with what is going on. I think in a way I still feel a bit like this is happening to someone else. As someone who has always been "on the other side of the Fence", i.e. the side of the person GIVING the diagnosis, I think coming to terms of the reality of me having a diagnosis is quite difficult.

At the same time my knowledge tells me that my tumour isn't bad. It's not in a great place (proximity to the speech centre) but its low grade. And there are people who deal with far worse things, so am I making a mountain out of a molehill? I try and imagine myself dealing with a patient in my situation and I know its not that "minor" at all.. my tumour is quite a decent size.

Anyone else had any experience of low grade tumours? How did you cope with the diagnosis? would really really appreciate some advice and support!

Thanks for reading,

 

Fran x

 

 

Shellby
Posted by

Hi Fran,

Firstly, I'm sorry to hear of your diagnosis - and sorry it is the natural response to offer someone but sometimes you may just want to scream when it is said that to you!

I too have a low grade giloma for which I had a biospy for confirmation of the tumour. One thing I would suggest is writing questions and make sure you get answers from the medical team. 

I will be honest -  I had to have some hair shaved off (which like you was long!) and I wasn't informed they were going to do it until they came near me! It's not a question I thought of asking which is why I say write a list questions - and if you can take someone (esp a calm person who is good at note taking) it helps!  If you have a Neuro - Oncology Clinical Nurse Specialist they can usually answer or find out for you.

Although too much information can be overwhelming too.  One thing I have learnt is one step at time.

I really hope this helps... please shout if I can support you in anyway...

Take care.... Michelle x

type2tattoo
Posted by

Hi Fran, Bless you <3  and sorry to hear of your diagnosis... I know everyone says that ? but its hard. I think it will do you wonders as a medic to understand what a profound experience this is. With a low grade tumour you are in it for the long haul and along the way I am sure you will teach your fellow med students the psych/emotional effects of this news and prognosis and the human aspect of dealing with it. My heart goes out to you as although you seem to come across as a proffesional I know this is your life.

 

My son was 28 when he was diagnosed with a low grade astrocytoma after a couple of full on seizures, They are trying to control them and they are not full on tonic clonic at the moment but he has debilitating auras often and complex partial seizures.

 

His 'tumour' is also in the left frontal lobe and 8 x 5 x 5 cm and he had a biopsy last May , it was not a difficult operation and he said that the dentist was worse :) he does have a scar but doesn't have much hair so it shows a little I am sure if you have thick hair you will be able to cover it up :)

 

One thing we found was that afterwards he had a lot of seizures and he had side effects from the steroids that made it more difficult, he has had anxiety and a few panic attacks since but he is ok and there is no change in the tumour :)

 

Lots of Love to you and your family and as always with everyone 'Be Brave and do the Right Thing' x x x

KittehFran
Posted by

thank you first off to both of you for taking the time to read my post and reply! I really do appreciate it so so much and it made me feel better to know there are others out there who have been through this and to know that what I'm feeling it "normal" and that its okay to feel like this.

I think because of my job I worry that I am expected to behave in a certain way because of the knowledge that I have (or am thought to have, tbh at this stage such specialist knowledge is not really my thing). So thank you.

type2tattoo, can I just ask, what type of "auras" does your son get? I havent had complex partial seizures and have never lost conciousness during my episodes thankfully. But my "funny turns" do seem to be getting more frequent. Its hard to tell which of these are migraine auras and which might be "other things" though as I suffer badly with migraines and with it being "finals" season my stress levels are through the roof!

Also, can I just ask this question as it will weigh on my mind otherwise. I think I will go to my GP in the next few days anyway as I need new migraine meds.

I had a real "funny turn" at the weekend: We were sitting at the dinner table and I had a sudden feeling of unease for a few minutes (cant put my finger on what it was) and then when I turned my head to look at something everything went really strange and there were brightly coloured stars/sparkles throughout my visual field, moving toards my central vision, like a "star tunnel". This only lasted for about 1 minute, then went completely. The shock of it made me cry (I was feeling quite emotional anyway, hadnt slept well and had a migraine all day, go figure)

I would NEVER mention this usually. I get visual migraine auras anyway, but this was so different. It was really brief and the visual aura was totally different. My migraine auras are usually dark patches that move and spread and are more "organic" in nature (e.g. floaters etc). This was very strange. and it went away completely after. I dont really think this was anything to do with the tumour, but wanted to ask if anyone had had an experience like this, or if I should mention it? I should know better being trained myself, but Doctors do make the worse patients.

Anyway, thanks again for the support and help. Will be phoning the Neurosurgeons secretary this week to make an appointment to sort out the biopsy :(

Thanks all,

 

Fran x

type2tattoo
Posted by

Hi Fran, Please don't think you have to behave in any certain way, do what you feel! it is a massive shock to be diagnosed with a brain tumour and has to be one of the scariest things ever to happen to anyone. Talk lots! to your friends or phone Macmillan support, also the Samantha Dickson bt trust have a phone help line and BTUK. There is lots of help and advice out there :)

I am not sure but perhaps your feeling at the dinner table was a simple partial seizure, my son sometimes gets just a wave of fear for a minute and then its gone. It can be very unnerving and he has often become anxious that it might turn into a full seizure. Perhaps you could talk to people on the epilepsy forums to get a better idea? It could possibly be anxiety too, be kind to yourself its all very hard to take in at first but you will be ok :)

 

I talk quite often to a chap in the US called George Plym he has had 11! bt's, the first one was in 1967 so there is lots of hope and future out there for all sufferers :) So stay positive!

 

I would also make a note of any symptoms, it will probably be difficult to work out if its a migraine or a seizure but the better documented you have things the better it is for your neuro to get an idea, there is a good epilepsy diary online at one of the forums which might help, can't remember which one but google it I'm sure you will find it, if not give me a shout :)

 

It won't be easy but do your best to put it aside and concentrate on your finals! You have plenty of time to waste worrying about it later when you have an idea what you are worrying about :) Lots of Love to you Lyndsey x x x

Suelck
Posted by

Hi Fran,

I read a lot on here but don,t post a lot, but felt the drawn to your post, you are a very brave women but also very positive. i think that is so important.

My son has a grade 2 astrocytoma, inoperable as it had tendrils, so is described as a defuse astrocytoma, his also near the speech centre. He had a biopsy early jan 2011, he had a small seziure post biopsy but only stayed in hospital for 24 hours.  he recovered quite quickley.

He is now on his 4th week of radiotherapy, and has been quite  fatigued with the RT. Steriods seem to have resolved this to some degree. He, like you wants his life back, he is a warrant officer in the army. It does not seem five minutes since he was out in afganisatn, 2nd tour the worry drove me mad. I ask why him, He hates not been in control and i hate been so far away.

If you read my profile you will see i have beat cancer and like you have a background in medicine , so i find myself sifting through forums, research paper all the time.

I still go to a alternative therapy centre near where i live, which i feel helps my sanity and gives me belief that there is more to the human body then we currently know. Cures are been found all the time.

One of the therapist gave me a book last friday about living with cancer and beating it. It is written by a medical doctor who had been undertaking research into brain mapping. They were mapping students brain using a MRI scanner , one night , one student did not turn up and he voluntered to go into the MRI scanner.

His MRI scan showed a tumour, this book described his story and how he felt the need to ignore the prognosis that his oncologist gave him. I am only half way through this book and i am already inspirited by his story. He is 15 years post diagnosis. 

His name David Servan- Schreiber , his book is called anti-cancer a new way of life.

Sue x

dvdq35
Posted by

Fran (et al),

This is my first post on such a site.  My choice of username is awful, so there's no harm in knowing my name is David.

I have read yours and everyone else's addtions to this thread.  Its interesting for me as I am on the same pitch.  I was suffering awful headaches last year, hit the deck on a long walk at the end of June and then had a bigger seizure start of August.  Tumour diagnosed, I was distraught, broke down immediately.  It was big, my surgeon went in a whipped (most of it) it out on 31st August 2010. Low grade diffuse astrocytoma.  I won't dilute it, its hard news, no doubt.  It happened very quick for me.  He mentioned the biopsy but said that if he was going in, he would go in and grab what he could, given the enhancing mass, as they say.  I was straight on the keppra and will be for a long long time.

But thats the tough side.  I'm over six months post op now and feeling so much better.  The slog, for now, is over.  I am, like yourself, a professional, the legal game.  It was hard going back to work but I was determined to get back into it.

Now, to your auras.  I had two fairly decent seizures pre-op.  Afterwards, three days before Christmas, I had a near miss.  That was nearly 3 months post op and I got a terrible fright.  But I am used to them now.  I get a near misses.  My meds have been upped a little so less coming.  But its the getting used to it.  I would get anxious, nervous of a day and then think it was another seizure coming on. Over a short time, you will begin to differentiate between an onset and a nervousness or anxious moment.  I haven't had a  pass out seizure since pre-op.  I get, as I call them, 'flurries' from time to time.  I was in a taxi on the way to a meeting the other day and had to wait in the taxi outside and let the flurry pass.  I explained breifly to the taxi driver and after one minute, I was off.  A little rattled but pretty much to the task.

My feelings on the approach are strange. I know when they are coming, I step out and sit down and wait for it to pass.  Its an aura alright.  Metallic taste, always on the left side of my mouth, deja vu, and sometimes a little disorientation.  The visuals, yes, thats part of it.  But within a minute, you're back.  As I said, time will pass and you'll learn to deal with it.  But go easy on the drinks, it heightens the chances.

As someone else said, yes, keep a note of your experiences.  Maybe you might be on the meds, its a balancing act regarding how much you take as against how you are.

Emotionally its tough.  Look to your friends and family.  My friends have be unbelieveably supportive.  I'd be lost without them.  My family too, but they live way off.

My life has changed, for the good.  I used to enjoy a fair few pints but drink very little now. Funnily, it was the day after the many pints that the seizures grabbed me!  Drinking helpd me for that one!

I hope I haven't scared you.  I hope the biopsy goes well.  Forget the hair doo, it'll grow back and they'll only cut a little bit!  Good excuse for the short look.

David

KittehFran
Posted by

Dear Michelle, Lyndsey, Sue and David

 

Thank you all so much for your comments and being brave enough to share your experiences on the forum!

 

I'm still struggling to come to terms with alot of what's happening and still have moments were I just sit down and cry. I refuse to feel sorry for myself though and when I have moments like those I do what I've just done and either go to the gym or get myself a coffee and bring out my textbooks and do some more revision for my finals as I am determined to pass this year and qualify.

I have spoken to the Neurosurgeon's secretary today and am waiting for a phonecall later this week to arrange an appointment to discuss the biopsy. I have also started making a list based on everyones advice here with all my questions :)

As for the epilepsy/migraine auras - I am still not sure how to tell the difference between the two and have decided really it wont make much difference knowing. I have been told to increase my Toperimate and am hoping I can balance decreasing the auras (whatever they are) with the side effects of the meds and being on top form for finals.

It's starting to move in the right direction now I think, even if its not a direction I thought my life would ever be taking. I am focusing on the positive: graduation, moving in with my fiance and getting our new ktiten in the summer.

Your stories have inspired me to do my best and take control and shown me that there is life beyond and it does get better :) so thank you all so much and god bless!! :)

This experience has changed me as a Medic already and has taught me lessons I will carry with me for the rest of my life and my working career. I'm sure there is more yet to come and I hope I will continue to learn from it and I hope my future patients will benefit from what I have experienced if nothing else.

Thank you again all! I will keep you updated with what happens!


Fran x

SusieSue
Posted by

Hi Fran, I do not want to frighten or upset you, but I wish I was more prepared for what could happen after my daughter had her biopsy. My 24 yr old daughter (a single parent of 2 little tots)  has a large tumour in the frontal and temporal lobes, We've been told its inoperable and no radiotherapy or chemo to follow.. as its in too dangerous a position and too big. She had her biopsy last week to determine the grade on Weds. She was in good spirits afterwards, a bit  groggy and sore having about 11 or so stitches, no dreadful headaches, but having been discharged 2 days later, had 20 or more mini fits on the way home in a hospital car, and somehow managed to wait until she arrived at A & E to have 2 massive seizures, scaring the life out of us! It turned out that the biopsy caused the tumour to swell, so causing the seizures. She has no memory of from the time she in the car on Friday until we took her home on sunday.. She's now slowly recovering and we get the results on Monday..

love and hugs

Sue xxx

KittehFran
Posted by

Hi Sue,

 

I'm sorry to hear what's happened with your daughter. My thoughts and prayers are with you and your family and of course with her two little ones. I hope the biopsy brings the news you and the doctors are hoping for!

all the best,

 

Fran x

 

SusieSue
Posted by

Hi Fran

thank you... she's almost back to how she was before the biopsy now and you cant see the point of entry or stitches on her skull as she has lovely long thick hair.. however, she's so anxious that she may have a seizure when she's alone with the children and no one else is around.. I'm scared too as it was awful last week.. Also, I dont live in the UK, I live in France and have been renting while over here.. we thought at the beginning, 2 months ago, that she would have treatment and we'd go home all done! But now? I really dont know what to do- I should go home but just cant leave her!!! On Monday we'll know for sure if the tumour is low or worse .. but its still life restricting.. and life reducing .. She's such a bubbly positive girl its so sad to hear her say wouldnt it be great if I had another 10 years to live and not 6 months!

I wish I had someone to talk to who has actually been through this.. people say to me things like oh yeah my father in law had a brain tumour, he was 74... stuff like hat and I want to yell but my daughter is only 24 and hasnt lived her life yet!!! ARGH!

I wish you all the best with your biopsy, and sorry for going on and moaning but I'm in bed with the lap top next to a snoring husband who says it will all be fine LOL

Sue x

 

 

type2tattoo
Posted by

Hi Fran,Sue and All,

 

I am in a very similar position to you, a little further up the mountain we have to clmb. My son was 28 when he had his first big seizure almost a year ago now and was diagnosed with a bt another month later, it wasn't till the June that he had his biopsy but inbetween that we were told it was inoperable which I have to say was the hardest day of my life. We were lucky to get the news that it is a grade 2 but still very big and diffuse and he has seizures every week.

 

I so feel for you Sue, its a hard thing to get used too especially as your daughter has small children, that makes it even harder to take. I have found it very hard as a Mum of an older child, there seems to be support for Mums with young kids but not so much for us and I quite often feel very alone with it all.

 

I have found a bit of support through our local MacMillan BTUK and the Samantha Dickson bt trust, they all have numbers you can call if you need more info or just someone who understands, that said I am in South Hampshire and if you need a chat I will happily pm you my phone number.

 

I wish you the best with the diagnosis and will be praying for you, please Fran and Sue let us know how it goes, we are all here to support each other <3

 

Lyndsey x x x

type2tattoo
Posted by

Oh and forgot to say, there is lots of trials and studies going on out there and I live in hope that one of these will be ready when my son needs it, one in particular is aimed at inoperable tumours and is 8 years into trials, its an injection that seems to have no side effects and has cured mice who had no way of surviving the bt's they were bred with, it seems to affect the acid protection around the tumour cells and then makes them commit suicide(the cells) It has now been approved for human trials so theres hope for a cure :)

 

That said if the worst comes to the worst we are not the first to lose a loved one to cancer, not a club any of us would like to be in but other brave souls seem to survive it and live I don't know how? butthey do with more compassion Love and understanding of others. I know this experience has taught me some very valuable lessons about taking life for granted and Love for my family and compassion for others and I am a better person for it <3

 

Love to all x x x

sharwigley
Posted by

Hi Fran,

I have just been diagnosed with a low grade glioma. Much like you, I had a sudden worsening of migraine symptoms and developed cluster headaches (which I had never had before). This was almost 4 years ago. My GP fobbed me off for that long, until I finally had such a bad spell last year that her 'hand was forced'. The neurologist referral didn't help much - he told the GP I was suffering from migraine/cluster headaches as previously thought. He sent me for a routine MRI, which no one expected to show anything. That was Saturday. On Monday I was recalled for an urgent dye-contrast MRI. Yesterday I was given the diagnosis by a specialist registrar in neurololgy (as my neurologist is on holiday). We are waiting for the outcome of an MDT meeting tomorrow.

I feel angry with the GP, but I knew something was wrong - I had a collection of the strangest symptoms, including severe increase in visual floaters, and very strange visual aura's (that I hadn't had before). I saw the GP yesterday and told her and she was stunned - speechless actually.

I am coming to terms with the diagnosis, although anxious about what the treatment plan will be. We had planned to have more children, so I would be interested in what your neurosurgeon says about the prospect of future pregnancies.

I know this is a rare illness, but it feels like it was found by chance. I am trying to stay positive for the sake of my husband, children and family, who are finding it harder to deal with than me.

Please keep me updated on your progress - and all the best.

Shar 

SusieSue
Posted by

the biopsy showed its a grade 2 oligodendroglioma.. no treatment except management with steroids, anti-epilepsy drugs, pain relief and 3 monthly scans and check ups. We are so relieved that she has years to live and not months but its still very hard to accept that her life is changed forever- and will be shortened unless a miracle cure is found. We mentioned the trials and the neuro oncologist said she could take part and it would be discussed with her at some point in a teen and young persons group. The one mentioned by type2tatoo is apparently for faster growing tumours I think? Every day I worry about my daughter and research tumours and treatments all over the world on the net. We try to enjoy each day and draw close to each other enjoy every minute of life the best we can.. easier said than done, as life is now a merry go round of doctors, drugs and hospitals! As soon as she's fit to travel we want to take her and her little kiddies abroard somewhere.

I'm following all of your stories on here, watching your progress and love to know how well you're doing! Love and hugs to all of you every step of the way XXX