dd has a giant cell tumour in her tibia, can anyone reassure me?

[kaylasmum]

my 27 yo dd has had pain in her right knee for well over a year now, the gp initially put it down to wear and tear. About 6 weeks ago my dd saw a different gp as the pain has been increasing more and more. He sent her for an x-ray which was clear so she was then given a mri.

She phoned her gp for the results and he told her that it was'nt her knee but that its her tibia and the bone is swollen. She went to see the specialist yesterday and she said it was a giant cell tumour and they don't think its sinister.

She has to go to a hospital nearly 100 miles away to have a biopsy. She was called today and asked to go in next wednesday. Everything seems to be moving fast and this worries me. They took bloods from her yesterday and did a chest x-ray also, not sure why.

Has anyone any experience of this? I'm trying to stay calm but its hard as i have health anxiety which seems to be centred on cancer. My dd is'nt overly worried but i know she's a little scared understandably about the biopsy as it will require surgery.

Just hoping someone can help ease my mind.

Giant cell rumours are never cancerous but I'm guessing they need to do a biopsy to make sure it's a giant cell one. But they'll be fairly sure since the MRI.

They'll have done a chest xray as even though it's not cancer it can spread, very rarely, to the lungs. They'd have said if they'd seen it in the lungs though I'd have thought. Even if it had got to the lungs it's still very treatable.

Treatment does normally mean an operation to cut the tumour away.

thanks viva,

Have you had experience of this type of tumour?

I think its just how quickly things are moving thats worrying us, but i suppose its better to get things done quickly.

Someone I was friends with at uni had one. I would imagine the reason they act quickly is because it can spread so they'd want to minimise surgery. Hope your dd recovers from this quickly.

thanks again viva,

I don?t know why they can't just take the whole thing out on wednesday. She's going to have to go through surgery and a general anaesthetic twice, it seems crazy, not to mention the 200 mile round trip, twice!

Anyone else have experience of this type of tumour?

I would imagine that they need to do a biopsy to confirm in a lab what sort of tumor it is. If in the very unlikely event its some very rare form of bone cancer then perhaps surgically removing it like you do for a giant cell tumour wouldn't be best practice? I think with cancer they prefer to do chemo first to shrink the tumour before removing it.

I'm sure what they're doing they're doing for a medical reason - lets face it if the NHS thought they could get away with one op rather than 2 they'd do it as it would be cheaper.

I am sure viva is right that they will not be doing unnecessary surgery. Also biopsy nails exactly what it is (along with other tests and scans) so they can be sure on any follow up treatment needed.

And I know it scares you but even If it was cancerous (and doesn't sound like they think it is), the uk is about best place in world for treatment and it is not necessarily a death sentence.

It will move fast as they will want to be totally sure that it is a giant cell tumour, and not any other type of bone tumour. A biopsy has to be done first as if it was something else, surgery could make things worse. It all has to be done at a specialist centre.

I've only met one person with a giant cell, and that was a gorgeous little boy with it in his neck - obv it couldn't be removed, so he came for radiotherapy

thanks,

I know they are doing the right thing but its all very scary, i feel so sorry for my dd she's had a really tough time lately, she has borderline personality disorder and has been doing really well lately so i'm a little worried that this will set her back a little.

She has a holiday booked to turkey in 5 weeks time and she's really worried that she won't be able to go. Does anyone know how long the recovery will take after the surgery?

CMOTDibbler do you have medical knowledge of this type of tumour? My dd was told that only 1 in a million get this, so very rare.

ecovery will take after surgery?

I'm a radiotherapy specialist, so I only ever saw the one patient - I remember this little boy as it was quite a challenge, and very unusual.

If the orthopaedic team feel your dd needs surgery before her holiday, I don't think she'd be able to go, but obviously she needs to talk to them about timings

Kaylasmum I found this site.

But I would be very wary of stuff on the net (am sure CMOt would agree) as it is no substitute for talking to the medical team dealing with your dd. dr, google is not very accurate and IMe of having a rare condition, what limited stuff there is scared me.

If dd has insurance she may be covered for cost of cancelling or moving holiday.

I wouldn't underestimate how long it takes to get over surgery . I had muscle tumour removed at beg of February and am still recovering (had a couple of wound infections too) so I think it pays not to rush into things (I know over doing it caused one of wound infections).

hi gigondas,

Unfortunately my dd does'nt have insurance yet, so looks like she'll lose all the money she's paid for her holiday. She's still hoping she's going to be able to go.