Wednesday, January 30, 2008
The beginning of my nightmare...sorry very long
This is my first ever blog so please forgive me I am just learning how to use this. I have been searching on the Internet for endless hours, days, and months for any info on Giant Cell Tumor and keep finding the same old info, I really wanted someone whom I can share my experience with, maybe someone who has been down the same road as I have. I never found anyone so I figured I'd start this blog and hopefully find someone either I can share some information with or someone who has some info for me. My name is Theresa I am 30 years old and living in NYC. I was diagnosed with a Giant Cell Tumor of the first metatarsal. Finally getting diagnosed took many months. I was experiencing pain on the top of my left foot, but associated it with my new shoes or long hours on my feet during my nursing clinicals. I let the pain go for 2 months and finally when I finished my semester of school I saw my general Dr. He was feeling my foot and said it did feel like tendinitis but he sent me for an xray just in case. He had given me anti-inflammatory and said take them for 3 weeks but if I were going to try to become pregnant then not to take them. When I went home and discussed this with my husband we decided we would wait and if I didn't become pregnant within 2 months then I would start to take them. I did go for my Xray which came back fine(so they say). So I just ignored the pain thinking maybe I was exaggerating exactly how bad it was. My Xray and Dr visit all took place in Jan of 2007. By the end of March my foot was excruciating. My Dr wrote me a new RX for the anti-inflammatory but when I went to pick up the meds I also picked up a pregnancy test. I got home and found out we were expecting a second child. I was so full of joy but panicked because this pain was just horrendous. I called my Dr who said to take Tylenol, that is all I could do. Finally the end of May I could no longer take the pain and also my foot started to swell up and felt warm to the touch. I called Dr who referred me to a podiatrist. I went to the podiatrist who said it looked like a lisfranc fracture and he sent me for an Xray. I hated to have the Xray being pregnant but my OBGYN assured me everything would be ok. I had the Xray done on Friday and Saturday I received the dreaded call from my podiatrist that I need to be in his office with my films and husband ASAP, he said there is something suspicious on the xray and he needs to see me. In his office he said that I have a bone tumor, whether it is benign or malignant we do not know. He did say that it destroyed most of my first metatarsal. I was hysterical. How can this be happening to me? I have a wonderful husband a 2 1/2 year old daughter and I am 10 weeks pregnant. I saw an orthopedic surgeon who had to recommend me to an orthopedic oncologist. The big problem now was that I was pregnant. The bone oncologist did tell me that he was 99% sure that it looked like a giant cell tumor, but most of my bone has been destroyed and that if I waited to give birth I would have needed my foot amputated by then. This was all too much for me to take in, if it were not for my husband and daughter I would have been in deep depression. My husband and I had to make the hardest decision of our lives. We opted to medically terminate my pregnancy, there was just to much to risk. It was one of the worst decisions I ever had to make and I second guess my choice every day!! I had a bone biopsy and bone scan. It was indeed a giant cell tumor. My surgery was scheduled for about 2 weeks after. The day of my surgery I was a disaster. I hate going under and the thought of this surgery was gruesome. I awoke in recovery and was totally out of it. I had a huge piece of bone taken out of my hip and put in my foot where the Dr removed the tumor along with much of the metatarsal. I have a metal plate and 8 screws in my foot. My surgery was done August 10 2007, today is January 30 2008 and I am still not healed. I was in a hard cast for 8 weeks and then put in a walking boot, all the time putting no pressure on my foot, I am using crutches. November 2008 I go back to surgeon and have xray to find out that my bone graft is not taking. He gave me a bone stimulator which I use every night for 40 minutes. I went back to him in December and had an Xray and once again it shows that I am not healing. He is giving me 6 more weeks to heal I will then have a Ct Scan and if I am not healed by then I will need this dreaded surgery again!! I have been missing out on so many things in my life. I desperately want to finish nursing school, I want to be there to take my daughter to school, I miss doing things for myself! I hate being so damn dependant. So that is my story. From what I know Giant Cell Tumors are very rare and even more so in the first metatarsal. They have a very high rate of recurrence especially if the tumor was as big as mine. The tumor can metastasize to the lungs (so of course every cough I get I think I have a lung tumor) I will need a chest and foot xray every 3 months for the next 2 years and then every 6 months for years 2-5 and then every year for life. I was told by my surgeon not to get pregnant within 2 years of having surgery. Which totally frustrates me because when I ask why I do not get a straight answer. I know that they say pregnancy hormones make the tumor grow rapidly. I will do anything to not have this tumor ever come back but I also want to have a baby, I guess for now I will enjoy the babies all around me. This whole process has been so much worse then I have ever expected. I am very thankful that it was a benign tumor rather then malignant but it is still a lot for me to handle at this point in my life. So please keep me and my family in your prayers my next appt is in 2 weeks!! Thanks
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41 comments:
YOU ARE IN OUR PRAYERS AN OUR THOUGHTS.....YOU HAVE BEEN THRU SO MUCH PAIN..NONE OF WHICH WE CAN MAKE ANY SENSE OF ..YOU KEEP SMILING AND CRYING CAUSE YOU ARE A FIGHTER AN WE DONT GIVE UP, KEEP BELIEVING AND HAVING FAITH EVEN WHEN YOU DONT HAVE THE ANSWERS....UNCLE JOE AN I LOVE YOU VERY MUCH AND SO DOES GOD....
I am in a very similar situation and would like to share experience with you. My email is kellybuicsuf@hotmail.com. Please contact me!
Theresa: My 19 year old son, Blake, also has a giant cell tumor of his sacrum. He was diagnosed two days after is 19th b-day. It is an absolute horror story. We have been to Duke University and MD Anderson in Texas. We are leaving for our third trip to TX tomorrow. We live in VA. My e-mail address is kristenhardison@yahoo.com We are about to begin fundraisers/awareness here in the next month or so for him. He is a great kid and we are so sorry to hear that you also have this..Blake said he would not wish this on anyone! Please e-mail when you have the time! God bless! Kristen, Blake's Mom
hello. I'm glad that someone wanted to write about GCT and connect people. I would also like to share my experience with someone. I am 27 and almost a year post surgery and have a lot of questions. My email is mhquinin@gmail.com
I hope that everyone is feeling well now. best wishes
Molly
hi , i am in same situation. i am 33 yr old and was planning to get pregnant. i had small pain in my left leg from 2 months but as i thought that before getting pregnant i should have a norma x-ray. my doctor told i don't need x-ray for minor pain but then also i insisted for it.In short i was diagnosed ( in nov 2008)with Giant cell tumor near left knee. Which was quite shocking for me. I decided to get it operted soon. so i got operated 2 weeks back. now since my ortho-onco surgeon told me to have x-ray done every 3 month for next 2 years. i know i can't plan a kid for next 2-3 years. its very hard for me to accept so much realities in small period of time. my surgeon told me i can plan a kid , but i took opinon of few more surgeons and they told me to wait.i am very depressed , how all of sudden this happened. i am a health person. why i didnt plan a baby 1 year back.biological factor will matter a lot , if i don't plan a kid for next 2 years.
Hello. I wanted you to know that you will get through it. I had GCT and it was a disaster. I lost my right forearm and it has gone to my lungs. I was depressed but I have fought back and fought back HARD!!! The tumors in the lungs have shrunk. In a sense the damn disease has forced me to live life to the fullest. You will crush this damn disease as long as you stay strong, positive and be your own best advocate. There is a drug called denosumab. If by chance there is any recurrence look into this drug! It is given at UPenn and has had a good success rate. Who is your Ortho-Oncologist? If you want to talk you can reach me at hofstra1997@yahoo.com.
OMG I have never heard of anyone else have it in the foot like me. I have it in the second metatarsal and cuneiform. I will be going for my 5 surgery since age 14 and your foot look just like mine except for the short big toe, mine is the second. The third time my returned I was pregnant and was told I could not have anymore children because of it. Thanks for sharing I don't feel alone anymore
I haven't been on here on years. I had a baby in June of 2010. The past week my foot has been causing me a tremendous amount of pain and the past 2 days it swelled up. I have an appt on the 19th nd from experience I'm certain my tumor has come back. I'm so sad and afraid at this moment!
Theresa, I really hope that your tumor has not returned. I too suffer from recurring Giant Cell Tumors. Mine have been in the thoracic spine. I have had a very difficult road and finally was able to get this last recurrence removed, although this time it took 2 1/2 years. If it is a recurrence ask your doctor about Denosumab. It is an osteoporosis medication, but it has been shown to shrink and get rid of GCT. My last tumor was deemed inoperable and was told I probably wouldn't see my next birthday because of the location and rapid growth. Well, they got approval for this drug and two years later the tumor was small enough to remove and here I am. The side effects of the drug are minimal.
Hi,Teresa thank you for sharing this blog. i had my surgery on july 23 and it took 18 hours because the GCT is in my spinal cord.i also looking for an answer how long it will take to recover. And im hoping to have a baby soon too....but i dont know if it is possible or not....
I'm having surgery this thursday for gct in the pelvis. So nervous and the information is so limited its frustrating......
Hi. Thank you for sharing your information! I was diagnosed with GCT in my neck on Tuesday. Its in the c6 vertebrae & very rare! From what i've been told so far, its usually seen in the lower half of your body and usually starts from the outside of the bone in, however mine starts from the inside working its way out and is right next to my spinal cord. I have been told that i need to have major surgery, plates etc & a long recovery time! I am absolutely petrified due to how close it is to my spinal cord and the risk of being paralysed from the neck down, should it go wrong!
I am 29. I have a 20month old little boy and am desperate for another child in a year or two. I have heard stories about being told not to get pregnant or that pregnancy can make the tumor grow faster etc. Its nice to hear that you were able to have another baby, but at the same time worrysome that you think your tumor has returned! (I dont think i could go through this a second time)! Keep us posted!
I would be very interested to hear off anyone else that has had/got this tumor in upper spine/neck and their story too!
Also, to those that have posted info on that drug - i was told about a drug but didnt catch the name of it - is it the one that you have to take every day for life and where you cant have any more kids?
Kelly (UK)
Hello everyone
I'm a 40 yesr old mum of two I was diagnosed of GCT of my right tibia it was the size of a orange by the time they got it out! It's has recurred twice and my tibia has slipped nd I will need a tibia nd knee replacement eventually.
It's painful to walk always
But I have after 7 years learned to live with it AND not let it beat me. I had a recurrence when pregnant in 2009 and carried on to have a op to remove it while preg. My lil girl is healthy and happy 3 yesr old now x
Don't give up xx
Lottieboo@hotmail.com if you need support
Hello,
I am 20 years old and a current student in Boston. I discovered I had a tumor half a year ago on my left tibia. I went on with surgery and have been in physical therapy for nearly 3 months now. If you want to share the experience with me, please email me at pduong20@gmail.com. Please contact me!
I am a 16 year old girl and I had always felt pain in my left knee since 4 years ago when I was in track and field. I thought it was a sports related injury so I never really thought anything of it. I had an xray about 2 years ago and my physician said it was nothing. This year I insisted my Dr it really hurt and had to be something. She prescribed me some anti-inflammatory medicine but that did not help. Finally, she ordered an Xray, nothing. So she said I will be able to have an MRI and the results came back that I had a lesion 2.5 cm above my tibia and below the kneecap. I had a biopsy and waited about 5 days for the results to see if it was a malignant or benign tumor, which was very nerve wracking for me and my family. Now, I know that it is noncancerous (yay!) and I will be getting surgery in 2 days and im super nervous hopefully all goes well. My orthopedic surgeon told me they will take out the tumor that is in my bone and replace it with bone cement and put a plaque on, hopefully the tumor does not come back :) Hoping for the best
I am sorry to hear about your condition and hope that you are well by now (July 25, 2015). I am enrolled in the Radiologic Techonology program at this time. My assignment is to complete a power-point about osteoclastoma. I need to include a story about someone who is or has been diagnosed with osteoclastoma, which I believe is the same as GCT. Do you mind if I use your story and pictures?
Thank you,
Kelly (RT Student)
Hi Kelly. You can use my photos for your assignment. It's very important for radiologist to be familiar with this tumor. I had a X-ray and the radiologist didn't catch it until my 2nd X-ray a few months later and by that time my bone was destroyed. Good luck with your studies.
Theresa,
Do you happen to have x-ray's of the GCT that can be uploaded or emailed?
Thank you so much for letting me use your story.
Kelly :)
Thank you so much for sharing your story. I was dx with GCT in December 2015, only after I fell and fractured my femur. Months before the fall I experienced pain in my knee that would come and go. I first noticed the pain during the 3rd trimester of my pregnancy, however the pain subsided after my daughter was born in April 2015. The pain came gain in Oct for a few days and again left. However in November the pain was back and remained. I went to go see my primary Dr and he ordered X-ray's and referred me to an orthopedic Dr. By the time I went to see her I was unable to walk and keep my balance and had to use a cane. During my visit with her she told me the X-ray were normal there was no reason for me to have such pain. She gave steroids, anti-inflammatory, a muscle relaxers, and ordered a month of physical therapy. 2 wks into the pt I feel at my home and rushed to the er. Dr the assumed it was a torn meniscus, but order a routine X-ray as precaution. The X-ray revealed 2 fractures on my distal femur and large lesion. He told me go see my orthopedic Dr the next as this could be serious. Long story short my orthopedic Dr referred me to the chief orthopedic surgeon and after mri (to view the tumor), ptscan (to look for other tumors and a bone biopsy (to determine whether it was malignant). I was dx with GCT on December 23. I went into surgery on Jan 5 2016. They removed the tumor added a chemical to destroy the micro cells, applied bone cement and use plates and screws to stabilize the knee. I was discharged yesterday from the hospital after a 2 night stay. I'm hopeful and pray that this thing does not return. I too will have to be monitored for recurrence. I'll pray for you guys too.
Thank you so much for sharing your story. I was dx with GCT in December 2015, only after I fell and fractured my femur. Months before the fall I experienced pain in my knee that would come and go. I first noticed the pain during the 3rd trimester of my pregnancy, however the pain subsided after my daughter was born in April 2015. The pain came gain in Oct for a few days and again left. However in November the pain was back and remained. I went to go see my primary Dr and he ordered X-ray's and referred me to an orthopedic Dr. By the time I went to see her I was unable to walk and keep my balance and had to use a cane. During my visit with her she told me the X-ray were normal there was no reason for me to have such pain. She gave steroids, anti-inflammatory, a muscle relaxers, and ordered a month of physical therapy. 2 wks into the pt I feel at my home and rushed to the er. Dr the assumed it was a torn meniscus, but order a routine X-ray as precaution. The X-ray revealed 2 fractures on my distal femur and large lesion. He told me go see my orthopedic Dr the next as this could be serious. Long story short my orthopedic Dr referred me to the chief orthopedic surgeon and after mri (to view the tumor), ptscan (to look for other tumors and a bone biopsy (to determine whether it was malignant). I was dx with GCT on December 23. I went into surgery on Jan 5 2016. They removed the tumor added a chemical to destroy the micro cells, applied bone cement and use plates and screws to stabilize the knee. I was discharged yesterday from the hospital after a 2 night stay. I'm hopeful and pray that this thing does not return. I too will have to be monitored for recurrence. I'll pray for you guys too.
Hi Sandra I'm reading your story and I'm currently going through the same thing I'll be having surgery soon how was/is your recovery? Hope all is well
Jasmine
Hi Sandra I'm reading your story and I'm currently going through the same thing I'll be having surgery soon how was/is your recovery? Hope all is well
Jasmine
I meant to leave my email Mjazzy29@gmail. Or to anyone reading I want to know how recovery went and how the Knee is functioning
I meant to leave my email Mjazzy29@gmail. Or to anyone reading I want to know how recovery went and how the Knee is functioning
Oh my gosh. My daughter was just told she had GCT and we are going to see a surgeon on Monday. Hers is in her left foot and is very large. How long is the recovery period after surgery. Also, we were never told it could be lift threatening. Have others been told this too?
Theresa I very glade I found your post! I am going through this with my son, he is 9 yrs old and his is in his left foot 4th metatarsal. He will be having surgery and the bone will be filled with cement. It's a very scary moment in our lives! My email is susanhenandez@gmail.com
Hi Everyone, I am glad I found this post and sorry for this diagnosis for all of us! I am very anxious, angry and depressed among other feelings that I was diagnosed also on July 27th, 2016. The tumor is in the left knee on the Femoral Condyle and is very large. I am waiting on the biopsy, chest ex-ray and bone scan to determine spreading and/or malignant. I am a 52 year old female and I live and breathe skiing, hiking, cycling and going to the gym 5 days a week. I played competitive volleyball and was a triathlete, I just can't believe this is happening to me! I am very healthy and never get sick which is so frustrating that this disease has not been linked to diet, environmental or hereditary instances. I will have the curettage with a high-speed burr and with the use of agents such as liquid nitrogen along with knee re-construction using re-bar and pins. This was only diagnosed because of on and off pain in my knee where my acupuncturist insisted I see a Physiologist who thought was it was a torn meniscus and asked for the MRI.I am someone who never sees a doctor, only acupuncturists, chiropractors and naturopathic doctors...well I am humbled. I'm so sick that I will be putting all this poison in my body from ex-rays, anesthesia, bone cement and whatever else I will have to take post surgery not to mention trying to be compliant and get rechecked for over a 5 year period. I'm sorry I digress, I am very anxious to hear about anyone who had GCT in the knee and has had a full recovery because I don't think I can bear my life without intense activity. Good luck to all and thanks for listening. Diana; Feel free to email me at diana.tynes@hotmail.com
So sorry to all that you guys have a lot of pain physically and mentally.I'm 24 yr from India and I was having the GCT in my left shoulder.I just fell from my bike 2 months back and the pain started at the place of tumour where I could not lift my hand completely.I went to local doctor and had a xray and this tumour was visible in that xray.but neither doctor or radiologist did not recognized it.I was given some pain killers and the pain was reduced.I started driving my bike after having a rest for 2 weeks but I could not lift or carry heavy weight with that hand.I thought it will be cured slowly,however I went to a good doctor as my shoulder was having reduced functionality.He again insisted me for new xray and then said that there is a bone tumour and this should removed by surgery.He was just like a god who recognized and diagnosed correctly.Everything was prepared for surgery this week.hope all goes well.please keep your prayers for me.
-premkumar.ap129@gmail.com
Hi, i just had my GCT surgery left shoulder(joint ball) last September 7, 2016. Im 26. It was diagnosed last september 3, 2016. When i first knew it, i was crying and shock. The doctor said the tumor is slowly eating my bone and almost left nothing, i was so afraid cause i think this tumor can be malignant or benign. My doctor scheduled my operation immedaitely. But luckily the tumor is benign. Two weeks after my surgery i cant still lift my arm fullt. I can still feel the pain when im trying to lift it. I know it was still healing. Is there anyone whose suffering loke mine? How long will i lift my arm without getting hurt? Please email me xhelyr@yahoo.com.
I feel I am not alone anymore. I am Sue 38 years old woman from cleveland Ohio. I had pain on and off in my left knee for more than a year. Finally I took the decision to see a Dr. He sent me for X ray. It was Huge Tumor the size of an orange inside my Tibia. It's the GCT. I was diagnosed on January 2016. The surgeon from Cleveland Clinic one of the best Dr. recommend Denosomab to shrink the Tumor before removing it. I took 3 injections one every week then one injection every month for 6 months. I had very good results. The Tumor shrink and the bone got stronger. I had surgery on September 2016. The surgeon removed the tumor. Put a bone graft and use a plate and screws to support the tibia. I was using the crutches until today when I went for follow up he said I can walk again. I really hope it will NOTE come back. As far as my lungs the CT scan was clean. I was very depressed when I found out. Now I am just ganna deal with it and live my life. I went through a lot. I don't know what triggers this kind of tumors. Just before I start having the knee pain I went through IVF. I wonfer if those crazy hormones have to do something with this Giant Cell Tumor?????
Good luck everybody!
I feel I am not alone anymore. I am Sue 38 years old woman from cleveland Ohio. I had pain on and off in my left knee for more than a year. Finally I took the decision to see a Dr. He sent me for X ray. It was Huge Tumor the size of an orange inside my Tibia. It's the GCT. I was diagnosed on January 2016. The surgeon from Cleveland Clinic one of the best Dr. recommend Denosomab to shrink the Tumor before removing it. I took 3 injections one every week then one injection every month for 6 months. I had very good results. The Tumor shrink and the bone got stronger. I had surgery on September 2016. The surgeon removed the tumor. Put a bone graft and use a plate and screws to support the tibia. I was using the crutches until today when I went for follow up he said I can walk again. I really hope it will NOTE come back. As far as my lungs the CT scan was clean. I was very depressed when I found out. Now I am just ganna deal with it and live my life. I went through a lot. I don't know what triggers this kind of tumors. Just before I start having the knee pain I went through IVF. I wonfer if those crazy hormones have to do something with this Giant Cell Tumor?????
Good luck everybody!
I am 20 years old and I was diagnosed with gct in my left knee today. I've been in pain for about 7 months and I went for physiotherapy because I thought it was an old dancing injury (I did classical ballet for 12 years). The physio didn't help at all, in fact the pain just got worse. This was very bad for me because I am studying drama and theatre arts and the pain held me back in class as we often do very physical exercises. I went for an x-ray yesterday just as a precaution and then they discovered a 4x3x4cm lesion. I had never even heard of gct before today and tomorrow I'm going to an orthopedist so that I can go for a scan and a bone biopsy. At first I wasn't really worried, but now as I'm reading all of these stories I'm becoming more and more stressed about this. I'm scared that it'll destroy my career in the future
I am 20 years old and I was diagnosed with gct in my left knee today. I've been in pain for about 7 months and I went for physiotherapy because I thought it was an old dancing injury (I did classical ballet for 12 years). The physio didn't help at all, in fact the pain just got worse. This was very bad for me because I am studying drama and theatre arts and the pain held me back in class as we often do very physical exercises. I went for an x-ray yesterday just as a precaution and then they discovered a 4x3x4cm lesion. I had never even heard of gct before today and tomorrow I'm going to an orthopedist so that I can go for a scan and a bone biopsy. At first I wasn't really worried, but now as I'm reading all of these stories I'm becoming more and more stressed about this. I'm scared that it'll destroy my career in the future
I am 21 years old and was out at a bar one night with friends in September. I slipped and felt a crunch in my knee. I tried to stand back up but couldn't put any weight on my left leg. I was in excruciating pain. I wasn't surprised because I had been experiencing knee pain for about 6 months that I attributed to my hips being unalligned. OMM and acupuncture helped with the pain and when I fell I figured I tore my meniscus. My friends rushed me to the hospital and the doctors found that my femur was broken due to a benign GCT. I waited 8 weeks for the bone to heal with an X-Fix on my leg that prohibited mobility of my knee. Then in November I had the tumor removed. They used liquid nitrogen to prevent the regrowth of the tumor and repaired the bone with a bone graft from my pelvis, bone cement, plates and screws. I have been using a CPM machine since the surgery to help with the range of motion in my knee. The doctor said I probably won't be able to put weight on the leg until March but until then I am allowed to start actively bending my knee. This has been an incredibly painful process both physically and mentally. I have to say this blog was helpful, I don't know anyone who has been through anything like this and it is nice to know I am not alone. I hope all of you are doing well and healing. To those who have been through something similar, how long did it take for you to regain range of motion in you knee (I am currently around 50 degrees during active range of motion)? What should I expect for when I can start putting weight on my leg? If you'd like to reach me my email is reidmag11@aol.com
This is the first time I've seen this Blog! My name is Beth, 30 year old mum of 1 living in the U.K.
I was diagnosed with GCT to my sacrum Jan 2016 and had surgery April 2016. I had terrible sciatica to my right leg, got worse during pregnancy and even more painful when I exercised. It haemorrhaged in October 2015 for the first time when the constant thundering pain started to my right leg and I lost feeling to my thigh. It haemorrhaged again 2 days before Christmas 2015. My doctors kept telling me it was a slipped disc and until my toes became paralysed they finally referred me to Spinal.
My recovery was good! I walk again, I never had bladder/bowel problems, all my recent MRI have been clear.
I found out TODAY I am pregnant again with baby 2 and I'm TERRIFIED this tumour with return, I had the worst time of my life with this and the research I've been doing is telling me that pregnancy can make GCT grow again/quicker!! I am soooo happy to be pregnant, I thought I would never get this chance again this time last year but what If... what if this ruined me? What if it metatises to my lungs, what if I have to make that decision like you did Teresa and terminate. So so so many question and once again a time of my life that can give no answers until I wait for them....
any experience with GCT and reoccurrence would be appreciated.
Thank you in advance and best wishes to all xxx
Hi I'm glad I stumbled on this page. I had pains in my right knee and thought it was just normal pains but dec 2015 I noticed a little swelling on the right leg from the knee down. In January I went to the national orthopedic hospital here in lagos Nigeria where I live and the doctor said its trauma to the ligaments and gave some medication, 5 days later I fell and fractured my femur which the X-ray diagnosed.
I went for surgery and it was discovered I had giant cell tumor. Well the doctor claimed he removed it but I left the hospital with an infection.
It was so bad that it wasn't managed well from April till I had to travel to the US in August and there the journey started. I was booked for another surgery in November where the infected area in the bone was taken out and the GCT removed and cement was packed in the bone.
I was placed on 8weeks vancomycin infusion every 12 hrs.
A picc line was inserted where the drip was administered daily. Then I had 3 incidents of blood clots( dvt and PE). I was in hospital for another 12 days. I'm much better now but the knee can't bend cos it was messed up during the first surgery. Doctor said I need a major knee replacement which I can't afford right now so I'm using a cane now to support my movement without bending the knee.
It's been a very horrible experience. Anyone wants to get in touch can reach me on georgy_id@yahoo.co.uk. I pray daily for no reoccurrence
I also have GCT. Im from the philippines.im only 32 yrs old but i was diagnosed with GCT after i gave birth to my child when i was only 30. Up to know im using walker. I cant provide enough money for my operation called megaprosthesis coz it cost half a million pesos. Im so depressed. Im having a hard time to go to bed every night bcoz of my situation. I really want to give up. Its almost 3 yrs since ive got this illness. I cant walk.. i cant stretch my knee coz it hurts.my GCT grow bigger and bigger but i cant do something about it..just to see my leg every day is a frustration. It looks tiny compare to my other leg. My knee is very huge because of the tumor and its really painful as the day goes by. :'(
Anyone experience a large GCT if the distal femur that can comment on their recovery? I am over 2 months out of the surgery and the knee swelling is still inhibiting full extension, altering my gait and causing pain.. my surgeon and physical therapist state that swelling can take a long time to resolve from this procedure, however it would be more reassuring to hear from someone who has experienced this. I’m in my 20s, extremely compliant, and active so this is causing some frustration, although it’s amazing to ready how many of you have gone through this also. God bless and hope you all have recovered fully!
Since commenting on this blog I've found the "Giant Cell tumour support group" on Facebook, there is nearly 500 members so I'm sure every will find someone whose had something similar and I've been able to ask questions and get real responses quickly! Hope this helps xx
It's me again Sue. I posted my Blog on November 16th 2016. I was doing very good after surgery. I was very active until one day I had swelling with discoloration and pain. My surgeon said Ibuprofen, ice and elevate. I didn't do it and I asked for an MRI and insisted that it felt different. The MRI showed multiple spot of recurrence. the surgeon said well you know it's 40% that it comes back but I need you to go for a Biopsy. there is always a chance that the cells will mutate to a Sarcoma (Bad Bone cancer). I hade the Biopsy just one week a go and it's the GCT growing again in the same Proximal tibia around the cement.
So depressed...
I'm so sorry to hear this. Keep your head up. Wishing you luck and a speedy recovery.
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