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Brain tumour info-we are in limbo

(11 Posts)
l4k Fri 03-Jun-11 09:01:00

I hope someone can help us,
My FIL was diagnose with a brain tumour in Basildon hospital last week after a few weeks of forgetfulness and 2 days of headache with vomiting and confusion.He had biopsy in Queen's at Romford on tues and they sent him home on weds with no information,said results will be given by video link at basildon one day next week.
FIL has 3 sons-my dh is the oldests-we feel responsible for them.
All the doc said after biopsy was that he would prefer not to operate because it could leave fil paralized (sorry sp)and that there had been some bleeding
during biopsy.
I thought they could have told dh more or explained it all more.
I had been told that removal by surgery is the best treatment (in combo with chemo or radio)for brain tumours but sil thinks that them saying they wont operate is cos its not bad enough.
also,a nurse told me that very few are truly not malignant-is that true?
Sorry so long
any experience with this out there?
Thank you
l4k

AccioPinotGrigio Fri 03-Jun-11 09:40:15

I am sorry to hear this. It is such a difficult thing for you all to face. My FIL was diagnosed with a non-malignant brain tumour 10 years ago. In spite of seeing some top neuro bods, the concensus was that because of where it was located they couldn't operate. He was told that the tumour could sit there quietly for years or it could kill him tomorrow. He goes every year now for a scan to monitor the tumours growth.

It does sound like very early days for you, in that the results of the biopsy are not even back yet. Until you know what you are dealing with there is no way you can predict the treatment options. If it's OK with your FIL I would recommend that he takes a family member with him to the next appointment. They can take notes and help process the information he will be given about the diagnosis, the treatment options and the long term prognosis. We did this with my mum when she was diagnosed with cancer and it meant we all knew what was going on and there was no confusion.

You might also want to contact a support organisation like Brain Tumour Support UK. When you know what kind of tumour you are dealing with and where in the brain it is located they may be able to give you additional advice and information.

Good luck with it.

AccioPinotGrigio Fri 03-Jun-11 09:45:06

Here is the website for Brain Tumour UK. Have a look or give the helpline a call with your questions. When my mum was ill we used the CancerBackup helpline and were so grateful for the information they gave us.

www.braintumouruk.org.uk/types-of-brain-tumour

AccioPinotGrigio Fri 03-Jun-11 09:54:44

Sorry, have just re-read my posts, I keep mentioning my mum and her cancer and just wanted to be clear that I am not suggesting that your FIL has a malignant/cancerous tumour.

It is so horrible to be in limbo about an illness but the appointment will soon come round and I really hope there is some positive news for you all.

l4k Fri 03-Jun-11 15:20:59

thanks for the advice accio
I just wish we knew what we are dealing with.
will look to check if I've seen that website yet .

l4k Mon 06-Jun-11 08:57:41

We still don't know and the constant worry is telling on everyone.
We did find out he's having problems with renal function too but not sure the significance of that.
anyone?

AccioPinotGrigio Mon 06-Jun-11 12:38:31

Oh bless you L4K. I am so sorry the worry is getting to you. Waiting for results is a tough, tough time. Do you have a date for the results yet? Is it likely to be this week?

I am not medically trained and my only experience here is as a family member supporting relatives through a difficult diagnosis. Based on my experience (mum with cancer, dad who had a massive stroke, FIL's brain tumour) it is very frustrating when you can't get the answers you want from the medical professionals.

It is easier said than done but whilst you are waiting do try to stay calm, rest and look after your FIL and yourselves. Depending on the results you may need your energy in the weeks to come. Maybe focus on preparing for results day, plan to make sure FIL is accompanied to his appointment by one of you so that you can understand exactly what the doctors have said. Most importantly, write down all the questions you have and ask them at the appointment.

Do also think about phoning the support people, they may not be able to answer specific questions but they could have some useful insights and may be able to advise you of key questions you could ask at the appointment.

Keep posting here if it helps and stay strong sweetheart.

l4k Tue 14-Jun-11 22:10:10

Accio, I haven't posted before now because there was no good news to share.
I was there when he was told it's malignant and aggressive,a Glioblastoma grade 4.It couldn't have been much worse,definately inoperable because so deep set.
We are in the process of getting a second opinion just to check if the treatment plan is right.They said 4 weeks of radio,then chemo then a drug-Avastin.They were very clear that it can't be cured.It's so sad.
My dh is heartbroken.
Btw,I did speak to the help line at braintumouruk,twice and they were very helpful so thanks for the advice.

Footle Sat 18-Jun-11 21:07:39

Message withdrawn at poster's request.

l4k Mon 20-Jun-11 17:12:35

thank you footle
I'm still following on the other thread,I'll come back and update at some point.

Footle Mon 20-Jun-11 19:12:59

Message withdrawn at poster's request.

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