New to the group, here is my story

[Nikki Wegman]

I was first diagnosed with a GCT on 2/12/2009 about a month after my 21st birthday. I had waited a very, very long time to go to see a specialist. When I was 17 I was in a vehicle accident that injured my left hand that later resulted in surgery so I accredited my problems to my prior surgery, I didnt think the first specialist I saw helped very much at all. Shortly after my first surgery (a few years after my accident) I became pregnant with my son. I had my son Feb 23rd of 2008. When he was about 3 to 4 months old I began experiencing pain on my hand when I would lift my son or if he would happen to give me a kick to the hand while changing his diaper etc. At this time its about end of March early April when i begin to notice this pain. I put off going to the doctor about my hand fore so long because I knew I would have to have surgery and I had no paid time off work until Feb 2009. I didn't notice a growth until about November. The pain by the time was terrible. If some one was to hit my hand, my dog would run into my hand or even my son kicking me I would instantly break down into tears. In late January I began to lose the range of motion in my thumb and started to have constant pain, by that time I was just fed up and scheduled the first appointment I could get with Kleinert and Kutz after months of my Dad trying to get me to go see them. The first time I met with my Doctor I was mortified by what he told me. He told me he did not think it was related to my accident adn that by looking at my X-Ray it lokked like a tumor, he sent me to get an MRI as soon as possible and the MRI confirmed his suspisions of a GCT. My next appointment was on 2/17/2009 and he explained the results of the MRI and told me I had to have surgery the next day! I was so shocked, he also explained that I may have to have a ray ampuation of my left thumb if the tumor had inclosed around the blood vessels in my thumb. He did not know how severe the tumor was and did not want to cut them out of the tumor with out having a biopsy done first but my tumor had progresses beyond that point. i was so scared and I didnt know what to think, I'm 21 years old and a single mom,this stuff does happen to people like me! That was the only though crossing my mind besides the obvious you've got to stop crying! I had my surgery on 2/18/2009 and came ok out. I had to ask my mom, boyfriend, and sister a few times after I woke up if I still had a thumb, but I got to go home the same day. I had some pretty bad side affects from the nerve block which made me unable to stop vomiting after 24 hours after surgery. I had to go back to the emergency room, get a bad of IV fluids and some phenergan but after that I was ok. I waited about 2 weeks and went back to the doc for him to check my incision and to get a new cast. When he took my cast off at my post op appointment I was so sad, it looked terrble. My hand was bruised and swollen and had pins sticking out of both sides of my thumb and a HUGE zig-zag incision. I had never seen any thing like it and started crying again! ( I think I cried at every visit for about the first 6 visits) Dr. Thirkinad said my Incision looked good, ordered my new cast and sent me on my way, I had to have a fiber glass splint made because he was sending me to see Dr. Monty Martin at Kentuckiana Cancer Institute to get a consultation for a treatment plan and my splint needed to be removable incase he need to see my Incision. When I went to see Dr. Martin it was an experience, I had never been to such a sad place. It felt just like death being in there and its a place that I never want to go back to. A lady from the Cancer Society was there consulting every one asking if they knew of support groups/foundations for cancer patients and other things of that nature. I even had to go through the treatment room to get back to Dr. Martins consultation rooms. I knew that was a situation I never wanted to be in. When I had my consultation with Dr. Martin he really didnt tell me any thing I couldnt find on the internet. The only thing he told me that I didnt already read was that my only option if the tumor came back into my thumb was to have it amuptated, he said if I were to do radiation therapy there would be a 1 in 10 chance for the GCT to turn malignant which was too high of a risk. He also helped explain my case reports a little clearer(Dr. Thirkinad sent copies of them with me to give to Dr. Martin). The origional biopsy stated that the tumor was completely excised but was senrt to the Mayo clinic for an expert opinion. After the report came back from the Mayo clinic they determined that the excised tissue was too close to the inked margin and that some of the infected cells may have not been excised (my tumor was 5 cm in length). Dr. Martin also let me know that the tumor has developed blood vessels inside the tumor and the infected cells had gotten into my blood stream and I could have another tumor show up at any time on any other bone in my body. About 6 weeks after I had my consultation with the oncologists I went back to see Dr. Thirkinad for another follow up. I was hoping that I could go a ahead and schedule my next MRI in a few weeks and hanve my next surgery and be done with the casts by the time summer came around. Between the time I saw Dr. Martin and Dr. Thirkinad I had devloped an infection in my incision which delayed my surgery time and the time before I could get my MRI. Dr. Thirkinad prescribed me an antibiotic and told me to clean my wound with 1 cup of water and a table spoon of bleach, let a gause pad soak in that mixture for a few mintues and then put the gause on the infected area for 10 minutes a day twice a day for two weeks. I was also taking my antibiotic every 6 hours so keeping up with it all was pretty exhausting for awhile. Once my infection had cleared and my MRI came back clear I was able to have my second surgery to take the bone from my hip and put it into my thumb. The second surgery was pretty painful. Worse than having a baby in my opinion. I had to stay the night in the hospital the night of my surgery and went home the next day, I had some more problems with the nerve block and got sick agian but it was not as bad this time, no ER visits! I am now 4 weeks out from my second surgery and my hip is healing ok, just having a little bit of trouble walking and fighting another infection but so far so good. I just thought it would be nice to talk to people who know what its like to be in my situation and how frustrating it is to have these tumors with so little information. I am also trying to see if there is correlation between a recurrence of these tumors and pregnancy because I would love to expland my family some day but I will be hesistant to do so if it will cost me my thumb. I am really just looking for support and any answers there are.

[Mary]

I am glad you found this site. You can get a lot of support and knowledge here from people with similar experiences. From some other postings I have seen, there does seem to be people who think hormones can fuel the growth of GCTs so you may want to discuss future pregnancies with your doctor. Good luck with your recovery!