This is actually the first time I have ever even attempted to find out any information about my situation and if there ever was or hopefully still is any action I can take. After 18 years of pain, suffering and lost opportunities stemming from the cancer I had at age 13 I am just exhausted.I never even really considered delving into this due to my thinking that back in 1991 when I was 13 I figured that my parents would have done something if it were at all possible to help me out for the future implications having cancer would have on my life.That is until about a month in a half ago I was speaking to my mom about when I had cancer and that they(my parents)could have pursued legal action. So that leads me to here and now I will lay out my story and hopefully get some kind of advice or answer.
I live in New York State and I am 29 years old.In 1991 I was diagnosed with synovial sarcoma cancer in my right heel. It was a soft tissue tumor about an inch in diameter.
There is some information/events leading up to the actual diagnosis that plays a role in this inquiry. Two years before the diagnosis I was experiencing pain in my right heel and began to see a doctor locally to find out was going on. The doctor examined me, but I clearly remember the first visit he grabbed my heel to feel it and I jerked back immediately in pain. The doctor quickly said it was plantar fasciitis from my reaction to his touch. The tumor actually was located more towards the outside of my foot,away from the tendons/ligaments that are associated with plantar fasciitis.The doctor placed me in a walking cast for around six weeks and said that would heel the area. To back track a little bit, before and after that visit for those two years I walked on the ball of my right foot due to the pain being too much for me to properly let me heel touch anything even the ground.Well, after the six weeks the cast was removed and the pain was still there and still unbearable. The next step was a bone scan and I am sure I had x-rays in between all this. The bone scan supposedly showed nothing, though I was 13 and am recalling this to the best of my ability and the results of any tests were probably aimed more towards my parents, but I do know I was present at most if not all conversations and/or doctor visits and did know what was going on.
I was also given orthotic inserts for my shoes and continued on living in pain and going about my childhood days as best I could with adjusting to the unbearable pain in my heel as to not let myself fall behind any activity. I was very athletic and very active.
Finally,in January 1991 that local doctor decided to do an MRI since nothing else was working and it came back as showing a soft tissue mass in my heel and I was referred to Strong Hospital in Rochester, NY due to their better care for something like this.
I was seen by an orthopedic surgeon at Strong Hospital and they performed a biopsy. This is a very interesting event and in my opinion a deciding factor on the outcome of my situation. My father had the MRI and was told to bring it to the biopsy, but he did not bring it. The doctors went on with the biopsy anyway and said that they would be able to hit the right spot due to the pain in the area would let them know where they would have to do the biopsy. The biopsy came back as benign and I went in for surgery to remove the tumor and be on my way. I had the tumor removed in an hour and a half surgery and went home. My parents were told by the doctors that in the operating room they looked at the tumor and it DID contain some aggressive cells,but further tests were needed. The pain was gone because it originated from the tumor being wrapped in nerves and pressing on those nerves. I was able to walk on my heel and was under the impression everything was going to be okay. On January 27th,1991 the doctor called and informed my Dad that the tumor did have cancerous cells and I was diagnosed with synovial sarcoma.
The following visit to the doctor was to discuss what was going to be done. I was given the choice of either having my lower leg amputated about half way up my shin or have the area carved out around the area where the tumor was before it was removed. The only problem was that I would be left with a foot for looks and that was all it really would be useful for. I would not be able to run and even walking would be difficult. I was a very avid baseball player when I was younger and my thinking was I would never play a sport again in my life so with tears in everyone's eyes in the room they asked me what I would want to do and I said amputate.
I met with the radiologist about radiation therapy and was informed that the surgery to remove the area did not have to be so drastic because the radiation could be done in such a way and strength that it would lessen the probability of a recurrence. I did not have the chemo because at the time it really was not proven if it would help or do more damage to my body and the doctors seemed on the fence also and didn't really think it would help.I went in for my second surgery in February of 1991 to remove the area around where the tumor was before they removed it in my right heel. A day or so later they removed the cast and my mother and I saw my new foot for the first time. The doctors had removed most of my fat tissue pad on my right heel along with anything that may have had contact with the tumor. The skin around the incision of the inside of my foot had turned black and died. Also there was a small hole along the incision that looked like it had popped open from the tension of them removing skin in that area and it was pulled tight and the stitches didn't hold it. A doctor had removed the cast and left my foot in the open air uncovered for a few minutes before my main doctor came in to look and when he did he quickly asked who left it uncovered and checked it out and covered it quickly. Which was probably because of risk of infection on an open wound.I ended up having two incisions on wither side of my right foot and as I said before the inner one split open and the skin died around that area. I developed a staph infection in the whole and it was eating the tissue away. I had another surgery to debreed the hole and close it again. This also delayed the radiation therapy. In March of 1991 they did that surgery and it didn't work. So I had to see a plastic surgeon who performed surgery in April of 1991 to move tissue into the hole. It turned out that I did not have as much tissue left where he wanted to move it from so he had to do a z flap and a y flap to fill the hole.
After a month or so I developed a blister on the entire bottom of my foot from the radiation causing burns. This further delayed the radiation until it was healed. I completed radiation treatment in the summer of 1991.
I missed school gained a large amount of weight and from that point on battled self-esteem problems and pain without much relief. I was fitted for orthotics and my foot held up through playing baseball until I was 18 in 1996.
I did however battle dry very, very callused skin on my foot that till this day is hard to control. I wasn't offered anything for pain and in 1994 was switched to Roswell Cancer Hospital in Buffalo, NY for follow up care and tests. I continued to need orthotics because my heel was much smaller and I had no fat tissue pad to protect the bottom. I can be barefoot and must be wearing some sort of shoe or slipper at all time to walk.
I graduated High School in 1996 and went to college for 2 semesters. At the age of 19 I became addicted to Heroin for many reasons. One major one was that it took away all pain in my heel and another reason was my way to cope with emotional pain that had built up since having cancer from looking for acceptance after feeling different from everything and everyone who didn't go through the cancer I did at age 13. It changed my life and led me down some horrible roads.
I still today see podiatrist for orthotics and pain relief and it is hit or miss with those because my foot is like no other. I take medication to deal with my addiction, but have been in multiple rehabs and have had legal problems stemming from my addiction. I have a 5 year old son and twins on the way.
Another major affect is that since I have not really found any safe reliable relief from the chronic pain in my heel I have lost jobs and cannot work at any job that requires me to stand for any length of time.
I am just looking for some kind of answer to see if I would be legally able to recover anything from the diagnosis being off at first and the other surgeries that were required because the doctors had to go back in to my foot and take out the are around where the tumor was after they found out it was cancerous. I mean they didn't have anything really to find exactly where the tumor was during the biopsy and still went through with it causing it to come back as not cancerous and then causing further damage to my foot to go back in. Along with all that is all the emotional pain and physical pain and lack of being able to find certain jobs. This is just a quick summary, but I hope you get the point and have enough information to at least give me some kind of advice in my situation. One more thing is that I know it has been 16 years, but I was a 13 year old kid then and really had no say, so I am hoping there is something that will make up for that and allow me to take some kind of action now when I am an adult and was given the knowledge that something may have been able to have been done back then. I have suffered far too long and now I only hope to help my children not have to have a father that cannot support them due to the pain. I am unemployed right now and desperately seeking a job that I can handle. I just feel like the whole ordeal doesn't seem right and I have suffered more than I should have in the last 16 years.
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