Giant Cell Tumor of the Sacrum / Back times 2

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Giant Cell Tumor of the Sacrum / Back times 2

Postby Aberdeenf14 » Fri Aug 20, 2010 8:52 pm

Hey my name is Lauren I'm 23 - when this all started I was 21. This is my story with giant cell tumor.....

On August 25th, 2009, I awoke with terrible pain in my lower back. It was 4am in the morning and I had just moved out of my parents house and to college three weeks prior. I was unable to sit, stand, walk, moving was terribly painful and I ended up at Kishwaukee Community Hospital's ER by the end of the night after calling my two great friends who rushed over to help.

When I arrived, I was only in the waiting room a short time. They took me back to my room quickly where the doc came in, saw me crying my eyes out and said, "Oh my gosh, you're in pain!" and left immediately. Next time he came back he was with a nurse and I was hooked up to a Dilaudid pump. After my Dad came, I was taken to CT where they discovered a large mass on my sacrum and asked if I'd known it was there... Ha, man I wish!!! :)

So the doctors told my parents it was a cancerous tumor but, after a very painful biopsy, they still weren't sure what it was.

This was when it really got bad. I had been on my mother's insurance my whole life and was enrolled when I was admitted to the hospital On August 25th, 2008. I informed my teachers of the situation and they converted my classes to online classes for me. MY INSURANCE THEN DROPPED ME!!! I was shocked. I didn't know what to do. They said that my tumor was "Too big so it must have been a pre-existing condition. THEN! They said, "Well, You're dropped also because you're not a full time student." This was just not right because we were working with my counselor and she sent my documentation that showed I was, in fact, a full time student. Well, I wanted to fight them, I wanted to... WOW. I was so mad, I still am but we couldn't because the insurance was from my parents employer and we couldn't have them lose their job! Not with all the kids in the family and then me coming home with this!! I was being looked after... I went to Rush and told them what had happened and they helped me. They said they had "angel funds" to help in this kind of situation and when I got my medical card to let them know so the funds could be given to others. Thanks goodness for the wonderful people who made that possible because only a few months in even the bills outside of Rush were piling up and drowning me. Yikes!

Meanwhile, I was taken to RUSH and treated with embolizations. While inpatient, I broke open a fracture in my sacrum while getting up to stand and greatly increased my pain!! WOW! I had Monthly embolizations until March of 2009, about twelve in total

March 5th, 2009 - RUSH - Chicago - Hospital This was the day of my big surgery. I later learned this surgery is done about 15 times every year in the US according to one of my doctors. That shocked me. I had a complete resection of my first giant cell tumor, which was the size of a grape fruit. The doctors then worked together to wash and expose my nerves. Sometime after ward they removed my sacrum which was so fractured that it couldn't be saved, this also meant the removal of my tail bone. They had rods placed on my pelvis and my spine and 31/2 inch screws in my bones! The x-rays are so wild. Then the plastic surgeon came to sew me up. They pulled my muscled from my shoulders on my back to cover the metal and hardware. Then, since I had lost so much weight, they were able to take my stomach and stretch it over to use some extra skin. Since my butt had kind of lost it's volume with nothing in there to hold it up, the surgeon used some kind of synthetic skin to roll it up and try to fix my bum.

I had lost half of my bodies blood. I was so swollen my lips burst open my eyes were swollen shut. My hands were huge and it felt like a different realm. When I woke up I was being brought into the ICU from surgery. I had the tube down my throat, which I should have known but was shocked to have in! I felt like I couldn't breathe, you'd know if you've ever had to use one. I had to cry my eyes open they were so bad. My body was on fire and I was laying right on my back. I was confused and wanted to breathe.

After a few days with my family i had a moment of clarity and call it what you will it was life changing to me. It was on the third day when no family was with me that I asked the nurses to help me sit if I could. The Next day I was in my own room. (I was supposed to be in there for 5 weeks, 6 weeks therapy) the fourth day I was walking, by the one week anniversary I was leaving for home with no rehab.

I had in home PT, no prob. The doctors tell me how lucky I am and that they haven't found someone whose been able to return back to getting around so normally like I do. I am in HORRIBLE HORRENDOUS PAIN ALL DAY EVERY DAY but such is life hahahahaha You just got to smile and make it through.

I had another surgery in March of 2010.

March 10, 2010 - RUSH - Chicago - Hospital - This surgery was to help the pain out. They shaved down the sides of my spine and my pelvis and got the shavings and made some bone growth substitute. Then the doctor used this to put on both sides of my spine to stabilize and hopefully help with the pain. So far both of the bones are growing nicely but the pain, man!!

July 30, 2010 - RUSH - Chicago - ACU - Same day Surgery - So for now, Today I had a steroid injection with floral to stop the pain in my left leg that comes out of nowhere and takes away the ability to put pressure on it and bend and walk. With stabs of wonderful back pain, but that can't be solved by the injection only the nerve leg stuff.

August 20th, 2010 - RUSH - Chicago - ACU another steroid injection, this time I got a wonderful migraine after on the left side of my head and eye haha it was not very fun at all. They ended up fixing me up with some headache meds, a caffeine/other med drip and a few syringes of fentanyl. I felt like my eye might fall out!!! hahaha

I went up and up and up and up on the pain patches, nothing helped for the year after.... it's been bad since day one. The doctors decided to put me on a clinical trial for recurrent giant cell tumor, which I had 2 of. I've been on it since December and drive 7 hours each way, once a month to Minneapolis, Minnesota to get the shots for the trial. It was very hard to get into this trial and they were not going to let me in until my doctor Stepped in to help. Again, the insurance dropping me came back to bite me in the butt here because they are a clinical trial BUT they will only give the DRUG to me while up in Minnesota... Everything else is out of pocket or has to be done at Rush in Chicago and then I have to FedEx the results. I'm very grateful for this trial of Denosumab put on by Amgen. So far the tumors seem to be just chillin and not getting huge!!

This has been an ordeal but I've been blessed for many outcomes I've had and the opportunity to have the most incredible team of doctors who have nothing but fierce dedication just like my friends and family that support me and carry my heavy heart everyday without even knowing....
Posts: 2
Joined: Sun Aug 08, 2010 5:01 pm
Cancer Diagnosis: Giant Cell Tumor of the Sacrum
Relationship To Patient: Self

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