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Brain tumor biopsy

(41 Posts)
mumblechum1 Fri 09-Mar-12 11:19:24

My nephew was diagnosed with a brain tumor on Wednesday, via a MRI scan. Was transferred last night to a bigger hospital on the understanding from what he'd been told that he'd have an op today or tomorrow to remove it.

Just heard from my sister that the bigger hospital isn't even going to do a biopsy till next Wed, so 7 days after MRI picked up the tumor, and the biopsy results won't be readyfor 10 to 14 days later, and then who knows when the op will take place.

Does anyone medical understand why everything is happening so slowly? The tumor is 3.7mm and the first consultant said after 5.2 mm it will be inoperable.

He's on steroids to relieve the pressure.

ChippingInNeedsCoffee Fri 09-Mar-12 11:23:14

Mumblechum - I am really sorry to hear about your Nephew sad I have no idea why it's happening so slowly, hopefully someone else who does will post soon. If it's just 'NHS' speed - any chance they could go private??

ChewingGum Fri 09-Mar-12 11:23:44

oh i am so sorry to hear this. Unfortunately i am not able to answer your questions, but really hope all will be ok.

iseenodust Fri 09-Mar-12 11:25:03

How very worrying for you all. My uneducated guess would be that there are not many neurosurgeons who specialise in paediatrics.

I'd be googling to see who operates from that hospital but that way may lie madness.

hope all goes well.

mumblechum1 Fri 09-Mar-12 12:48:55

He's an adult.

Thanks everyone. I don't know whether private would be an option for him; I expect he could go private for something minor but guess that neurosurgery would be ££££££.

I'm hundreds of miles away so can't really do a lot; all the family are hanging around in the hospital waiting room feeling a bit useless.

mumblechum1 Fri 09-Mar-12 17:29:12

I've spoken to my sister, and the consultant has said that going private wouldn't actually be any quicker.

So we all have to wait and see now sad

ChippingInNeedsCoffee Fri 09-Mar-12 22:09:59

Mumble sad Well, I suppose it's good to know it wouldn't be any quicker if he did go private, that takes away a lot of the stress/guilty feelings about that. Waiting is bloody horrible - I hope he (you all!!) get some answers soon.

AngryFeet Fri 09-Mar-12 22:19:00

Well the culture to check for malignancy takes about a week so not sure why they would say they will operate tomorrow if they don't know for certain it is malignant. It is very unlikely it would grow over a cm in a couple of weeks and I doubt they would make someone wait if the chance of the tumour becoming inoperable in that time was likely.

Doctors are rubbish at giving enough info to stop people worrying so you may need to force it out of them.

Sorry for your news, hope it all goes well.

Lougle Fri 09-Mar-12 22:32:16

Hi Mumblechum

I think the delay will be to allow the steroids to work. It's impossible to tell whether the 3.7mm growth was a 'fast' growth or 'slow' growth. So, to us, the difference between 3.7mm and 5.2mm sounds absolutely tiny, but in growth terms that means that the tumour could grow by another 41% before it is inoperable.

The doctors will have an idea from the appearance of the MRI films as to what type of tumour it 'could' be. They won't know for sure though.

If they are waiting there is a good reason. That doesn't make it any easier, though. Remember that not all brain tumours are malignant, either. All brain tumours cause problems because they are inhabiting a confined space; some are also malignant.

mumblechum1 Sat 10-Mar-12 00:26:24

thank you for latest posts which explain a lot. I'm getting all my info second or third hand from various family members who are all upset and possibly not really taking in what they're told by the professionals.

Lougle Sat 10-Mar-12 07:49:42

True. To be fair, also, brain tumours are somewhat different to other tumours in the body. Generally speaking, if a tumour elsewhere in the body is 'benign' then it is not worrying in itself, so they will not need to do anything with it. Unless of course, its position compresses nerves, etc., and causes secondary symptoms. They may still remove it for peace of mind, but it isn't an emergency.

With brain tumours, you have tumours that are malignant (rapid growing tumours that have a good blood supply and infiltrate the surrounding tissues, such as glioblastomas) and tumours that, in themselves, are not malignant.

However, 'benign' tumours in the brain can cause as many problems as malignant ones if their position restricts either blood flow or compresses nerves. For example, accoustic neuromas grow around the vestibulocochlear nerve, which means that as the tumour grows, hearing is reduced or lost.

So this might be why the information you are getting is a bit fuzzy, because people are used to thinking 'cancer' or 'not cancer', but brains are a bit more tricky than that.

Either way, be assured that the surgeons are highly specialist in neurosurgery. When I worked in a regional neuro-surgical centre, there could and would be procedures overnight (often all night) if need be, or at the weekend. They wouldn't wait if they needed to move.

mumblechum1 Sat 10-Mar-12 09:56:01

Thank you so much Lougle, you've been incredibly helpful [flowers]

mumblechum1 Sat 10-Mar-12 09:56:16

thanks even

Stinkyfeet Sat 10-Mar-12 10:17:48

So sorry about your nephew - you must be all over the place.

It's a very worrying time and probably very difficult for you to be hearing the information 2nd or 3rd hand. They may not understand all that is being told to them and may not want to ask questions when the answers may be terrifying. When ds1 was diagnosed with his brain tumour I didn't want to know anything apart from what the consultant saw fit to tell us - I just couldn't take anything else in. It's really one day at a time at this stage. How is your nephew - is he otherwise well?

You may also find that the consultant changes his mind over the coming days over when he's going to operate and what procedure he will carry out. For ds they didn't do a biopsy separately - just took the whole thing out, and we got the results about a week later.

Sending you lots of strength for the coming weeks. I hope all is well.

mumblechum1 Sat 10-Mar-12 10:35:32

Thanks Stinky. I'm trying to support my sister, mum and neice and nephew's fiancee, although we're hundreds of miles away. I'm not close to my nephew, only see him at weddings and funerals type of thing,but my son regularly texts and facebooks him so he's v worried.

It's awful for them, as the family (except for me for geographical reasons) are very close knit.

How is your ds1 now, and how old was he when he had the op?

Stinkyfeet Sat 10-Mar-12 10:44:28

He was 8 - it was only last September. His tumour was malignant, so he's had radiotherapy and is currently having chemo, but he's doing really well, so we're all very positive for the future.

All the emails and texts I received while waiting for his op and recovering afterwards meant a great deal to me, so keep them up.

mumblechum1 Sat 10-Mar-12 10:47:23

Wow, Stinky, how very very tough that must have been, but I'm delighted he's making good progress now.

I'll keep texting and phoning, and have passed on Lougle's info in text to my sis this morning.

Nephew seems ok in himself now he doesn't have massive headaches, and I think he'll be allowed home after the biopsy to wait for the results.

Stinkyfeet Mon 12-Mar-12 18:24:55

Any news on your nephew today mumblechum?

StarlightDicKenzie Mon 12-Mar-12 18:33:19

My dad had a mass the size of 6cm by 8cm. They made him wait 2 whole weeks to operate on it and removed the whole thing in one go.

He was then given the all clear, told to come back for a scan in a year and if that was clear after 5 years. That was just under a year ago.

Lougle Mon 12-Mar-12 20:23:43

Was that a meningioma, Star? They are generally quite easy to access.

3girlies Wed 14-Mar-12 13:36:01

Good luck with your nephew, I hope you get a good result. My daughter became ill last June, but on admission to hospital was so unwell they waited for steroids then shunt surgery as she was losing her sight and their priority was to save her sight and then diagnose. It took a full 4 wks to diagnose s the only option was to go in and take a sample as it was not showing up in other tests. During the wait there was a slight change in appearance on the scans and this is a very aggressive type of tumour and rare in children, but even this did not grow in the way you are concerned about over a period of 3-4wks, so try not to worry too much about the wait is my essential point. We were also allowed home after diagnosis, then returned for surgery and radiotherapy. She is currently undergoing chemotherapy.
Where is it situated? Some are easier to treat than others depending on location and type.

Stinkyfeet Thu 15-Mar-12 13:28:31

Sorry to hear about your daughter, 3girlies. Have you seen the Children with Cancer thread in Children's Health? Feel free to join us if you'd like to chat with other parents who are going through the same experience.

Any developments with your nephew, mumblechum?

3girlies Thu 15-Mar-12 16:42:57

Thanks - I will look for it. I have beeen a member for years but not posted much recently, forgotten where everything is!
Yes any news also mumblechum?

mumblechum1 Tue 27-Mar-12 15:09:10

Just an update.

Bad news sad, sister just texted to say it's a Grade 4, I don't know the type. I don't know any more than that but have been Googling and the prognosis is really bad, it looks like it's going to be terminal between 4 and 12 months.

So sad, he was supposed to be getting married next year.

sad but hold your horses there Mumblechum. There's a difference between Grades and Stages of cancer. Grade relates the the level of aggression (so Grade 4 is an aggressive tumour), Stage relates to how far is has progressed. So, someone can have, for example, breast cancer that is Grade 3 (aggressive) but Stage 1 which is still very treatable. Alternatively you could have a Grade 2 tumour that has spread and is at Stage 4 whereby the prognosis is poor.

Keep away from google if you can. Cancer is never black and White, but unfortunately the Internet is multi coloured and there's too much info out there that won't apply to your nephew.

mumblechum1 Tue 27-Mar-12 15:48:05

Thanks. I need someone to tell me to hold my horses, and any reassurance is helpful.

I'm 300 miles away from all my family and whilst I know this is by no means about me, can't help feeling so worried, particularly for my sister and his fiancee.

I'm going to call my sister tonight once she's had a chance to catch her breath and will ask about the stage.

CMOTDibbler Tue 27-Mar-12 15:49:42

Unfortunatly, a grade 4 in brain tumour terms (Glioblastoma Multiforme is the only one described in these terms) is very bad news indeed. There are treatments that will give him good quality of life for a while, but his life will be very limited I'm afraid.
Wishing you and your family strength in the months to come

mumblechum1 Tue 27-Mar-12 15:54:36

Thanks. sad

LemonEmmaP Tue 27-Mar-12 16:07:02

So very sorry to hear this mumblechum sad It all sounds very worrying. I hope you and your family manage to find your way safely through this difficult time.

boohoohoo Tue 27-Mar-12 16:22:06

Mumblechum, I am so sorry, can give no advice but am sending heartfelt wishes to your nephew, your sister and yourself x

mumblechum1 Tue 27-Mar-12 16:33:21

Thank you all for your kind words. Am steeling myself to phone my mum, she's already lost one grandson (our DS1) and isn't very strong emotionally sad.

Lougle Tue 27-Mar-12 19:24:38

Mumblechum, I am so, so sorry for you and your family. Grade 4 Glioblastoma is very aggressive. I hope you can all support each other in the weeks and months to come sad

mumblechum1 Tue 27-Mar-12 21:01:13

Thanks. Just spoken to sister who is remarkably calm; I think she'd been doing a lot of googling and felt that it was going to be very bad news. It's so awful for her and everyone else.

I've suggested to that he and his fiancee on holiday somewhere hot next week, as he starts radiotherapy in 3 weeks for five days a week for six weeks so he's going to be in pretty crap shape once that starts.

CMOTDibbler Tue 27-Mar-12 21:33:10

He'll probably get appointments through for next week as theres lots of preparation for the radiotherapy to do, so don't book anything.

ChippingInNeedsCoffee Tue 27-Mar-12 21:35:47

I am so sorry to hear that Mumble sad

I hope what you have googled isn't right. I'll keep him in my thoughts x

mumblechum1 Tue 27-Mar-12 22:43:54

sad I've just offered to send them to the Four Seasons at Sharm el Sheikh from 1st to 8th April but they can't, as CMOT says, even though the treatment doesn't start for three weeks he has to have some more tests.

It would have been lovely for them to have a week of calm before the storm. I got cancer in 2004 and before I started chemo DH and I had what we called the Celebrate Life weekend at the Four Seasons in Prague. Many cocktails were drunk.

mumblechum1 Thu 19-Apr-12 14:41:35

Just a little update; nephew and girlfriend are getting married on 27 April. Twill be a bittersweet occasion, I suspect. DS and I went up to visit a couple of weeks ago and nephew was v v quiet, whether that's depression (likely) or an effect of the actual cancer on his brain, I don't know. He's normally a really outgoing young guy sad.

He starts his treatment 3 days after the wedding so they've had a pre-honeymoon in a lovely hotel which is something smile

CMOTDibbler Thu 19-Apr-12 20:15:58

I'm sure it will be a lovely wedding though incredibly sad.

The quietness may be a combination of things - and his personality may go through some big changes, so go with the flow on that.

sajaruss Wed 25-Apr-12 11:08:34

I was diagnosed with a grade 3 glioma in 2004. Had surgery to remove most of it, then 6 weeks of radiotherapy to 'mop up' any remaining cancerous cells. That was five years ago, and I'm still here! Although last year the tumour returned and was put on chemo- the docs took a long time to decide whether they should do this in case I wouldn't survive long enough to see the benefits. I was pregnant at the time and had my son at 31 weeks so we both spent a long time in hospital!! The doctors didn't really think I'd make it out of hospital and had all but booked me a place in a hospice.
Don't give up hope. Brain tumours are tricky things to be sure, but I hope your nephew gets the most out of the life he has. Radiotherapy is pretty good. Apart from the permanent hair loss, there aren't many awful side effects. Tell your nephew to imagine the radiowaves killing the tumour cells; that's what I used to do!

sajaruss Wed 25-Apr-12 19:35:23

I was diagnosed with a grade 3 glioma in 2004. Had surgery to remove most of it, then 6 weeks of radiotherapy to 'mop up' any remaining cancerous cells. That was five years ago, and I'm still here! Although last year the tumour returned and was put on chemo- the docs took a long time to decide whether they should do this in case I wouldn't survive long enough to see the benefits. I was pregnant at the time and had my son at 31 weeks so we both spent a long time in hospital!! The doctors didn't really think I'd make it out of hospital and had all but booked me a place in a hospice.
Don't give up hope. Brain tumours are tricky things to be sure, but I hope your nephew gets the most out of the life he has. Radiotherapy is pretty good. Apart from the permanent hair loss, there aren't many awful side effects. Tell your nephew to imagine the radiowaves killing the tumour cells; that's what I used to do!

mumblechum1 Mon 30-Apr-12 17:06:24

Thanks, sajaruss, that's very encouraging, and congratulations!

(sorry for late response; this had dropped off my threads list). He starts his treatment today. The wedding was actually an incredibly joyful occasion; all the white wedding bells and whistles at just three weeks' notice - just shows you don't need a year and a half to organise a wedding! Church was packed,and we partied into the night smile

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