14 months and 2 surgeries later I am still in the same spot! Thankfully there has been no tumor recurrence! Bad thing is my 2 bone graft surgeries did not work! I saw my Dr almost 2 weeks ago and he said he feels I should be able to walk on my foot without the metal and screws breaking or coming loose. I have to wear sneakers only, if I would have been told this last year I would have been so sad but now I feel full of joy, as long as I do not need this 3rd surgery!! If a problem does occur I will need what is called a free vascularized fibular graft....UGH!
I have been in my sneakers for almost 2 weeks and so far so good. I have pain only in my ankle because it is stiff from not using it in over a year. The Dr does not want me in physical therapy because he is afraid the manipulation can damage the metal. So I am happy! I will be even more happier next year when I reach the 2 year mark. I was told when I was diagnosed with Giant Cell Tumor that we would have to wait to become pregnant for at least 2 years. I am eager to add to our family and pray that can start next Fall.
I will be back when I have some more news!
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8 comments:
Hi, glad to read your brave story. Its an inspiration to me.
My GCT was in my sacrum and I had my operation in July 2008.
Since it tangles with nerves, doctors only able to scrap the GCT, before reinforce the area with bone graft from left leg and steel implants. If the whole GCT was removed, the nerves had to be damaged and I won't be able to move anymore (anyway I'm only 26 yrs old).
Currently I'm on vege and low sugar diet, in the hope to starve the GCT calls. I do follow up with my doctor every 2 -3 months, up to 5 years. The sad thing was due to the metal implant, CT and MRI scan could not be effectively done onto me. So they only can rely on my X-ray, physical symptoms and health condition (fever & pain) to determine if the GCT had came back.
Please continue to update us with your brave story :P
My Dr was telling me about patients who have GCT on sacrum. It is a very hard area to remove the GCT. Are you able to walk?
Yes, I'm still walking around. My Dr just scrap what ever they could and my nerves were spared.
Dear teresa
I AM 62 YR OLD FEMALE DX GIANT CELL TUMOR IN JULY 2008.I AM A NURSE i BEGIN TO HAVE SLIGHT PAIN IN MY L KNEE IN JAN 2008 I SAW ORTHO SX WHO TOLD ME i HAD THIS TUMOR IN MY DISTAL FEMUR. HE RFERRED ME TO ORTHO ONC DR HE SAID I HAD AN ENCHRONDROMA & WOULD NEED TO WATCH THIS TUMOR. IN JUNE ON A REG F/U THE TUMOR BEGAN TO GROW. I WAS BX THRU THE BONE INTO TUMOR & WAS SCHEDULED FOR KNEE REPLACEMENT/BONE RESECTION IF THE PATHOLOGTY SAID IT WAS A CHONDASARCOMA. NO IT WAS DX OSTEOSARCOMA. I WAS BEING SCHEDULED FOR CHEMO & I BECAME
ANGRY WHEN IT TOOK SO LONG. I CALLED DUKE & SAW SARCOMA TEAM THE ORTHO ONC DR WANTED TO REVIEW THE PATH.. I WAS REDIAGNOSED GCT OF DISTAL FEMUR. I HAD SX TO REMOVE THE TUMOR HAD CEMENT RODS IN BONE, JULY 2008. I AM RECUPERATING BUT MY LEG STILL HURTS
HAVE STARTED BACK USING CRUTCHES PARTIALLY. I AM SO GRATEFUL & THANK GOD EVERYDAY BUT I AM TIRED OF BEING SICK. I AM AFRAID I WILL NEVER BE ABLE TO WALK WITH OUT PAIN i WS HPPY TO RUN ACCROSS YOUR BLOG
hiya~
I am 33, and have had 4 surgeries (first when i was 16 most recent 6 years ago) due to multiple GCTs & recurrence & mechanical failure in distal femur/proximal tibia. my left leg is mostly all metal now, sort of bionic :) this journey is long, painful and trying and you just have to hang in there. "nice" to find some other that have had/are having similar experiences.
The plus side is i have a leg, my health, i can walk and live my life almost normally. i'm grateful and humble and would be a totally different person if i haven't had the experiences i've had.
dear indomital spirit I WAS GLAD TO HAVE YOUR POST. I AM HAVING PAIN & HAVE TO ACCEPT . I AM NOT PROGRESSING FORWARD FROM MY SX I AM IMPATIENT. YOU HAVE BEEN THRU SO MUCH. I THOUGHT I WOULD HAVE SX THEN GO WITH MY LIFE. NOT THAT EASY.
This most definitely is a long and painful journey but some good has come out of this experience, my outlook on life is completely different. I live each day and make the most of it, I have no room for negativity in my life and I try and surround myself with positive, happy people. I will alwas worry about this tumor coming back and needing more surgery but I refuse to let it consume my life. I will take one day at a time!
dear theresa thanks for your encouragement. I am new to internet so some of my comments do not have my name I feel so much better interacting withfellow gct pts. Please stay in touch
carolgct
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