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Brain Tumour - diagnosed on Friday, now what to do?

(40 Posts)
Whizkidwithacrazystreak Sun 05-Aug-12 18:19:16

6 hours after returning from a lovely holiday my GP left a message requesting a call back. I called and was told that the MRI I had showed Meningoma(s), which I have since learnt are more often benign tumours that will require removal.

I am still coming to grips with this news and am now wondering how I am going to deal with the appointments and recovery as I have two DSs (5&3 yrs). My family are all OS but my mum will come over at a drop of a hat, but I want more info from the specialist before she takes the 24hr flight.

I don't know if I require a live in au pair or would a live in mothers help be better? Am I being realistic thinking that 25-30hrs a week at around £100 per week be sufficient?

DS1 will start school in Sept and DS2 will return to nursery every morning at the same time. The hours required will differ depending on the time and when I will be scheduled for surgery.

I dont usually have any help so it's going to be very new for us all......

CMOTDibbler Sun 05-Aug-12 18:43:16

If your mum could spend a while, then I'd get her to come over. You aren't going to want the hassle of organising an au pair, and will want a bit of tlc too.

It's prob going to be very intense for the next few weeks and months maybe, so perhaps look into a cleaner who would also do a bit of babysitting/school run etc if needed, so you had some flexible adult help to call on.

Baskets45 Sun 05-Aug-12 19:01:30

I hope you'll have amuch clearer idea of what to expect after you see specilaist/neurosurgeon, in terms of time scale for sugery, stay in hosp, recovery afterwards and any other treatment. You poor dear, what an awful thing to be happening. Presumably you'll see specialist soon? There is a charity - Meningioma Support UK. Hopefully you'll get questions answered there, and maybe someone to talk to who has been through similar in terms of young children and surgery etc. that might help with the planning.

thewhistler Sun 05-Aug-12 19:25:41

You first need to discover what their nature is. Meningiomas are not uncommon in middle aged women and can often just be left alone unless they are inconvenient or are cancerous.

I have brain tunours, two sorts, both inconvenient but both benign. My neurologist insists that I have check ups every six months to check they haven't grown it changed in nature. One is very inconvenient so we may try it shrink it or deal with the side effects another way. The side effects are caused by the position not the tumour itself.

he is opposed to invasive surgery unless really essential.

When I was told I was really scared and lined up one of my friends to come to sort out the house with me just in case. But actually, what I think you need in Je first instance is your ma to look after the dcs which you have your MRI. Allow a couple of hours to get there, fill out the forms, queue, have it done, and sit down afterwards as you may feel a little dizzy. But it's fine.

Then have someone with you when they give you the results because you will want to cry whatever they say, and you will want to remember what they have said, and what you want to ask.

Feel free to pm me.

Whizkidwithacrazystreak Sun 05-Aug-12 19:26:54

Thanks CMOT, I think you may be correct in getting mum over sooner. Flexile adult help would be ideal. How do I advertise for that. Woman with two young boys requires help in and before brain surgery? I can see most running a mile....

Baskets - you are right. I hope I'll be much clearer once I see the specialist and I'll contact the support group tomorrow, or once I find out where and what size the tumour is. It's been dreadful to be armed with this information with know knowledge all weekend.

Whizkidwithacrazystreak Sun 05-Aug-12 20:00:25

The Whistler - thanks for your advice. I have already had the MRI and it was this that showed the tumour. I missed the appointment with the ENT who ordered the MRI based on deafness and bad headaches/tingling sensations all on my right hand side of my head. I am rather anxious to find out the location, size etc and plan to hang out at my GPs surgery tomorrow to get some answers. The specialist appt will be within 2 weeks I am told.

SauvignonBlanche Sun 05-Aug-12 20:08:22

Hi Whizzkid, my brain tumour was found in the same circumstances, after an MRI requested by ENT surgeons.
It was pretty scary to be suddenly referred to neurosurgeons but they reassured me.
I've had my tumour for 21 years, it's going nowhere and neither am I.
Good luck!

thewhistler Sun 05-Aug-12 23:22:37

Sorry I misread.

It is horrid and scary. My neurologist told me that he would do things in the following order, laser treatment, chemotherapy, surgery. I think he is now changing his mind and is opting for chemotherapy but before even that thinking about what could be done to mitigate the side effects. Funnily enough one of mine is near the ear too.

So it's worth discovering what the options are.

Have you registered your preference for a hospital? Imv worth going for the best if you can get there. I'm no expert on who is the best but IME teaching hospitals are great as they treat you more like a partner. ( the whistler family has had more to do with hospitals than I can think of.)

Whizkidwithacrazystreak Mon 06-Aug-12 08:01:44

OMG, I haven't even contemplated chemo.

I was thinking of a benign one with just a surgery removal...

Gigondas Mon 06-Aug-12 08:06:43

Whizkid- sorry you are going through this but agree with other advice about waiting for your appointment to see what specialist says before planning what is needed .

And I know it's not cancer but if you want practical advice on ops , radiotherapy and Chemo pop over to tamoxifen thread here.

And I was terrified of chemo but am Mn after my 3rd round yesterday- It isn't nice but it is manageable (most of side effects are kind of things you may have being pregnant or giving birth except they give you better drugs to deal with if smile).

thewhistler Mon 06-Aug-12 08:52:47

Completely agree with gigondas.

It's sometimes a question of where they are.
One of mine, benign, is in a place that is hard to operate in. So it is a question of shrinkage. But they only do any of this if it is worth the risk. In one of mine, it isn't, I just have to live with it. And that's ok. Irritating but not insuperable.

In the meantime, cherish yourself.

HarlotOTara Mon 06-Aug-12 08:57:03

Sorry to hear this, not sure if my experience will help but my dd was diagnosed with a brain tumour on her brain stem when she was 18 months old which thankfully turned out to be benign. After her op she recovered really well although has lasting problems due to nerve damage because of where the tumour was located. I also have a friend who had a benign tumour and he recovered very well in a matter of weeks - basically recovery from surgery. My daughter's consultant said that recovery from benign tumours is fairly quick but I imagine it all depends on where the tumour is located. My dd has had weakness down one-side due to her tumour being at the bottom of the brain stem and at the top of the spinal chord - removal meant damaging the nerves on one side. We were out of hospital within two weeks of the operation but her real recovery took 6 months.

I wish you all the best. If it helps, from what I understand, benign tumours are relatively slow growing so hopefully if your symptoms are fairly minor that is a positive.

Whizkidwithacrazystreak Mon 06-Aug-12 11:52:02

Thank you all for your comments.

I have managed to get an appointment with the ENT specialist today where I hope to find out the size and location of the tumour. I may have had this tumour for years and it's only just started to have symptoms as of last year (headaches, forgetfulness and now the numbing sensation, and possibly the long standing deafness).

thewhistler Mon 06-Aug-12 20:52:05

I hope it went well and am thinking of you.

Gigondas Mon 06-Aug-12 21:50:33

Me too

SauvignonBlanche Mon 06-Aug-12 22:15:05

Thinking of you.

Whizkidwithacrazystreak Tue 07-Aug-12 16:14:03

The ENT obviously couldn't tell me much about the tumour, however, I saw it positioned on my right front lobe. I think it may be classified as a parasagittal, but needless to say I am not trained to read this MRI scan hmm

It now actually explains a lot of things: forgetfulness, cranky, less tolerance with DH and DSs, always feeling cold together with the headaches and numbness.

I'm trying to put it aside until I get to see the doctors at St Georges hospital. Anyone familiar with this hospital or have been treated there?

gingergran Tue 07-Aug-12 16:38:21

Sorry to hear you did not get the answers you needed.

I have not had first hand experience of St Georges but know people who have and none of them had a bad word to say about their care.

Hope your next appointment goes well and that you get answers about your treatment soon. I know from waiting to hear about medical matters that sometimes the waiting is worse than the knowing

amberjane Tue 07-Aug-12 21:11:20

hey, had my glioma removed at st georges 2 yrs ago and omg they were the best ever. Got moved there after made stable at my local hospital , x2 days of severe multiple seizeres. Now under St Lukes in Guildford for 6monthly mri scans and to see dr.
Memory is most of my problem. Have 3 children, single mum, roped in the family, called the schools, adult social care and got a cleaner!
Please please pm me with any questions you may have whatever they are ......Amber also very good at hand holding if needed.

thewhistler Tue 07-Aug-12 22:12:28

Have friends who work there and friends who are patients, as amber says, nothing but good.

Take care. Thinking of you.

HarlotOTara Wed 08-Aug-12 10:53:55

My dd was under St George's care which was fine - ten years of scans etc. Her surgeon was Mr. Marsh who is my hero as he saved her life but I had infinite trust in him as he was very honest with me and it was very obvious he cared about his patients.

I hope all goes well for you and please update I will be thinking of you.

Whizkidwithacrazystreak Wed 08-Aug-12 12:22:59

That's all great feedback. Thanks.

Amber - wow, how did you (and do you) do it. Will pm you when I can.

Strawberriesandicecream Wed 08-Aug-12 12:26:48

I have been treated at St George's for over 10 years, and I have nothing but praise for the hospital. I am a very anxious patient, and the staff are very kind.

I don't have experience of neurosurgery. I'm being looked after by cardiology and cardiac surgery, but I have also seen a neurologist there, and she was very thorough. She even called me at home a few months after to check that I was still well.

My aunt had neurosurgery there about five years ago, and she came through her operation well even though she was a frail elderly lady.

It is a very good hospital to be treated at. For me, the location is quite inconvenient, but I'm still glad to travel there because I know that the standard of care is very high. Although it is a large hospital, it's also a very friendly one and the staff do seem to work well as a team, from the surgeons, nurses, technicians and porters to the admin staff.

amberjane Wed 08-Aug-12 18:58:41

Whizzkid thinking of you today, my neurosuergon at st g was mr minhass, hero!
dont always manage but ask for help, life throws a new picture everyday.
Any help, numbers sure can help, dont know what else can add without waffling.......

Whizkidwithacrazystreak Fri 07-Sep-12 13:58:34

So I finally saw someone on Wednesday this week. I saw Professor Bell, at St Georges and he was most apologetic of the fact that I had not been seen by anyone since the date I was told about this tumour which was on 3 August.

It's the size of a tangerine, and has unfortunately spread a little to the left side which may hinder total removal. Surgery is scheduled for the 20th...scary stuff, but I do want it out of my head.

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