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Tara 38, Female United Kingdom: Share

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has anyone had gct of mandible?

Replied Oct 12

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Im in pain..sick of it now, im limping again and doctors no help at all. Oct 24

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Im in pain..sick of it now, im limping again and doctors no help at all.

October 24

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September 9

Tara updated their profile

July 4

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June 27

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May 23

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7 weeks post op

May 23

Tara and Kain are now friends

May 16

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I guess im impatient

But im 2 weeks post op and i feel worse, my knee seems to lock so getting up/standing up is really difficult, i thought i should be starting to feel better not thinking this is getting worse, i hope this is normal???. x

April 13

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March 31

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March 31

Profile Information

About Me:: Hiya, My name is Tara & im a mum of 4 children, 3 boys 1 girl at the ages of 14, 12, 4 & 19 months & i live with my partner Ashley in Northampton England.
My story was, i did notice last year my leg was cramping alot at night and keeping me awake but i didnt think anything off it, in october 2008 while holding my baby son i slipped on a table mat that was left on the floor, my left leg went flying infront of me and twisted to the right, i heard a loud pop and did think ohh no its broke...i couldnt get up. I had xrays and they said nothing was broken, gave me crutches and painkillers and sent me home with a appointment to go back a week later...i still couldnt walk and in alot of pain so i was given a appointment at the fracture clinic.. in mean time i got a appoinmtent thru for a MRI scan...at the fracture clinic they told me i had a growth and they didnt know what it was, i was given a appontment to see the consultant in the new year. He refered me to Stanmore..the loud pop i heard when i fell was me fracturing the tumor!! ouch.

How do GCTs affect you?: GCT patient

Location of primary tumor:: Left distal femur

Date of diagnosis of primary tumor:: 17th March 2009 (tho was found in november 2008 and they had no clue to what it was)

Treatment of primary tumor:: Tumor removed march 27th 2009, was scraped out and cement used to fill the hole.

Facility treated at for primary tumor:: RNOH Stanmore

Would you recommend this facility and it's Doctors to another GCT patient?: Definitely yes

Tumor free?: yes i hope so

Having a tough time

Im so upset right now, as if i need stress on top of trying to cope with this pain, because of the lack of knowledge of this tumor people are acting like im a liar... i mean trying to explain this is benign but can spread and no i havnt been offered chemo...is like righto so theres nothing wrong with you...benign means nothing serious so stop feeling sorry for yourself and get your backside back to work.
This is exactly what the social is doing to me, even tho my doctor has signed me off work and told me under no circumstances do i stress about anything, im too concentrate on dealing with the pain and recovery.
I am 5 weeks post op, im walking around the house with 1 crutch, i cant walk far as the pain is too much, i dont sleep well due to the ache which is so far worse than beore i had the op and next week i have to attend a interview with the social to "get me back to work" i have rang them explaining the situation but as i havnt got Cancer and im not bed ridden i have to attend and let them prepare me for courses or interviews to find the right job for me, if i dont attend they will stop my sickness payments.
Iv spoken to my horrified doctor but social said we dont actually care what your doctor told you to?
So yes how great is this. Im so upset . xx

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I guess im impatient

Posted on April 13, 2009 at 5:42am — 1 Comment

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At 11:05am on August 31, 2009, lottie said…: hey hun thats amazing news!! ive got my mri appointment sept 14th am very nervous.. but such inspritional news chick xx

At 10:18am on August 21, 2009, Tara said…: Had results from my MRI and all was well!! great news, tho im still in alot of discomfort at night with aches and doctors still unsure to why, but never mind im just pleased my results were clear.
Also they only 90% sure its a Giant cell tumor, they said patholgy results didnt match the mri/xrays so at a guess its a giant cell tumor...i dont like the fact they dont know but aslong as it dont come back it dont really matter. xx

At 10:51am on May 23, 2009, yamen said…: hi Tara
it good yor better

At 3:54am on May 23, 2009, Kain said…: Doing well, thanks for asking. Try to cheer up. My last surgery was in 2001 - a lot of time to recuperate and I had many own ups and downs during that time. Best of luck to you. Just remember that you have the support here when you need it.

At 4:42am on May 22, 2009, caroline said…: Hey glad u doing better . I am doing good but it is 7 months now since my operation. Work is going well and it is good to be normal and do normal things, there is only so much day time telly a normal person can cope with ha ha , and i hate ironing too , so work was a good option !!!!. Good luck with the social surely your gp and consultant can write to them and support you , stay positive x

At 3:56pm on May 21, 2009, lottie said…: heya chick hope u r ok?? see u have that nasty webcam message too! looks like she sent it 2 every1 xx

At 3:11pm on May 19, 2009, caroline said…: Just wondering how ur doing .?? :-)

At 6:55pm on May 14, 2009, Kain said…: Hi Tara, we can all relate. It is extremely painful in the beginning which is why you must complete a full rehab. That is the key to getting better. If you have not read about this already, there is a very high recurrence rate (50 %) when having the bone scraped out and using bone cement. GCTs are very, very agressive tumors that are mostly benign. I was forced back to work early for my 1st surgery but had a great boss at the time. I was very lucky. Please pay close attention to your knee and go for check-ups every 3 months to make sure it did not come back. There are ways to isolate the tumor if they detect it early. Good luck and feel free to contact me. I have a great doctor who provides advice online if you're interested. Feel better. And yes, it is normal to feel the way you feel. - Kain

At 8:01am on May 2, 2009, caroline said…: Hey you sound soooo sad what a tough time you are having . I found out that evenalthough i had 5 weeks radiotherapy because i didnt have 'Cancer ' i got very little support and although my gp spoke to the cancer support sevices they said even tho i had had more treatment than most of their cancer clients i didnt qualify for support . Thank god for friends and family. I am hoping to change that and have written a help leaflet for people in our area who go for radiotherapy to liverpool ( were we are sent from the IOM ) . I met with the cancer care services and they are going to start some support for patients having tumour ops and radipo therapy whatever their diagnosis . As for work i was on half pay for 4 months and its been tough, and one of my bosses who is a GP has been very unsupportive . Its all horrible but you will be generally low at the moment cos u have been thro a huge trauma its like a post traumatic stress and it will pass in time although you may need some help to get thro it , thank god for this site cos we can vent off and we all understand , please try and stay positive thro all this xxx

At 4:41pm on April 6, 2009, Pam said…: Hi Tara! I'm glad your surgery is over, it's good to be on this end of the tumor.... out of your body! I wrote a journal as I went through recovery, ask me along the way and I will tell you what I was going through at that point. It's nice to know you are going through normal things both psycially and emotionally.

You are at a rough point now... it does get much better. Have your physical therapist give you exercises to do from bed, standing and holding onto a counter, from a wheelchair... whatever your circumstances are. It will help you feel better, improve your circulation, etc. Take care... ask me anything, anytime and I'll also check up on you. Many best wishes to you, Pam