Discussions By Condition: Medical Errors

Cancer At age 13, can I do anything now???

Posted In: Medical Errors 10 Replies
  • Posted By: jacarney8657
  • February 20, 2007
  • 10:59 PM

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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10 Replies:

  • Sorry for your situation. I wonder if there is a statute of limitations in your state. Many are 7 years maximum. Lots of lawyers offer free short consultations. One could answer your question in a second. I would suggest that. Take care of yourself.
    Anonymous 42,789 Replies
    • February 21, 2007
    • 03:12 AM
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  • a biopsy is just to get some tissue from an area then this that they remove is sent to labs to be assessed. What they first found those cells were benign, this could be normal, but they went in and removed the tumor....this relieved your pain as you stated. After they got the final report from the Path lab they had the correct diagnosis and followed thru with the surgery. So far, this is typical procedures.Take for instance my husb...he has had 3 surgeries for basil cell cancers on the top of his head. His last one couple weeks ago. The doctor made a 5 inch incision...deep, and got the places he could "see". When he went back to have stitches removed then he found out the margins were not clear....the path lab had to tell the doctor that.....you can't just "see" cells unless clusters as they told you "seemed aggressive there".....anyway, now he will have to go back and have further surgery for the 4th time.....this is not unusual.....it happens.Frankly, my thinking is you need to get in counseling, don't be turning to drugs, get state aid for a training in some type job you don't have to stand all time, and with vocational training you can maybe find something. There are many handicapped out there that have much more problems and they are working......you can, so go for it....make it for you and your children....drugs are not the answer thats for sure
    agypsygrl 79 Replies
    • February 21, 2007
    • 04:24 AM
    • 0
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  • Yes, go see a lawyer, and see if there anything you can do about it. But be prepared to hear that there may be nothing financially you can do. But also take care of your state of mind, by getting a good counselor. You have alot of emotional fallout from that time and a good one would help you make sense of your feelings about your parents, doctors, and your vulnerability in that period of your life. Don't let the cancer get your mind. Good luck and let us know what happened.
    Pauletteaz2 9 Replies
    • August 28, 2007
    • 08:07 AM
    • 0
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  • Have you heard of acid-akaline diet/ PH diet?There's many cases of people being healed by changing the way they eat in my country. I'm also currently finding out more about it.Google up/research on akaline diet. I hope it will really save your life. One very good site I've found- http://acidalkalinediet.com/Those people at the forum should be able to guide you.
    Anonymous 42,789 Replies
    • August 29, 2007
    • 08:43 PM
    • 0
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  • I disagree. His parents made the legal decisions for this person when he was a child. The stutute of limitations is up on malpractice in most states. Don't spend any more energy on the lawsuit. Your head will spin with regrets and anger. It will feed your addiction. I agree with the statement about counseling. You should have had it at the time. I think you are still mourning the little 13 year old who was once healthy. It's sad, but you need to make the best of it and with drugs, that is the worse of it. I hear it helps with the pain, so I think you need to see doctors for pain management. Try to get into one who specializes in pain management. And the person who said to look to job training is correct...Job Corps will train if they have the funds..a wait list is better than no list. You're a good writer, too...maybe do some work from home...try to make a life for your children and a dad they can look up to. You can set an example of taking a crisis and trying to overcome it, making your children proud. Good luck.
    Monsterlove 2,921 Replies
    • August 29, 2007
    • 09:48 PM
    • 0
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  • I am so sorry for all you have gone through. Do you realize, you may have just saved someone's life by writing about your situation here?While I hate it when people say, "get some counseling", I am sure it would help you to have someone to talk to.Addiction is a hard, difficult thing. I wish I had words of advice, but I agree with Monsterlove. Give up the legal battle. It will really bring on more pain and you will win little if at all by the time it is all finished. A close relative of mind died due to "partial" negligence. We had reason to sue...but we would not have won. It is hard to find Dr.'s to testify against other Dr.'s, keep in mind and people (other lawyers and Dr.'s) WILL work AGAINST you to make sure you do not have a case.Again, I hate it when people say this...but your energy is better focused elsewhere, not on a lawsuit. It is hard to accept the past when it has messed up the future we did not plan for ourselves. You must move beyond the past. You are grieving for your 13 year old self. The baseball career you could have had and more.Despite all you have been through, you are a father and have children. I lost my niece at birth, yesterday, and must go view her tiny body that had NO chance in a tiny coffin for buriel tomorrow. You are alive. When I first started reading your story, I thought it would be something about the cancer returning and that you were dying. You are not, but are emotionally a wreck....You have a choice. Everything you do is a choice. I know, I've been in the lowest darkest places where I could barely see the light. I made myself smile. I practiced it. That was my first step. But I did not do it alone. I know you have also been through ***l.I could reccomend that you seek alternative therapies for your addiction. That you go see a therapist. I do not know what you can do, but you do. You have it within yourself to get better, but you must first start counting what you have (counting your blessings, in a way) and accepting what you have. It is almost like the song that says, "Love the one you're with", do not love what you do not have.What you do not have, you can always work for. It will be a struggle, but you have already proven that you are a strong human being. You have that strength within you, but we all need help now and then.I wish you well. I wish you peace.Val 52
    Anonymous 42,789 Replies
    • August 30, 2007
    • 05:39 AM
    • 0
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  • You should be counting you blessings to be alive. My son was diagnosed in 1986, after 2 years of pain in his knee. He was 8. It was recommended at UCLA and Columbia University NYC we amputate his leg. We did not. The tumor was removed. He went on for 14 years--then it came back. Once it returned he did have the amputation at age 22. Yes, we allowed him to make that decision. He died 9 months later -at age 24. He also would have been 29 today. Your parents and the medical community did what they could to salvage your foot as we tried to salvage my sons leg. Synovial Sarcoma is the worst deadly disease and it can return- it just takes one tiny cell in your body. Be thankful you are alive, get to a therapist and stop trying to blame others. No one is to blame, be there for your kids as you truly are lucky to be alive. Mom in Oregon
    Anonymous 42,789 Replies
    • February 2, 2008
    • 05:25 AM
    • 0
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  • Each individual has a challenge in this life. I experience my husband 14 years od heroin addiction. I have 2 kids, I have 2 jobs and I have heath issues that are as bad as cancer.I learn to not look back with anger. My experience and suffering made me stronger & stronger. My kids are the main focus. You have to turn around your experience to make it positive. The only bad consequence is your addiction. Cancer can be cured or can kill your body. Heroin kill your soul. You are not longer a loving concious humman. You are a slave of the drug. you became a walking death individual.Please, listen to yourself. You become a victimizer self center. What about your kids?Do you think they want a heroing addic mom?If I give up I probably I have already be dead, lost my house & my kids would be in a foster home.You survive your cancer. You have the respomsability to transmit the best of you to those kids.What are you going to do? Why don't you see the reality that you are hurting those kids with your addiction like cancer hurt you when you where a kid?The power is in you, inside.We have the power to change and learn from our experiences.It sound chesse but this life is about love and life not destruction.ECBL
    Anonymous 42,789 Replies Flag this Response
  • After my mom passed away we found out that here in Tennessee you have 1 year from the day the mistake was made but it varies from state to state...Good Luck
    Anonymous747 1 Replies
    • August 29, 2008
    • 04:05 PM
    • 0
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  • When I read your story now I started think about my heel's pain differently. I should check it out for sure.Here is my story. When I was 23I went to 7 doctors being young MD myself, and all of them refused to operate my thyroid,stating that I am paranoid, stupid, not knowledgeable and etc.,I insisted and the doctor #8 did surgery and found cancer to her surprise. Because she did not believe me also, she did not do radical surgery, and I had to go for the second surgery. Doctors are not Gods and can not know everything, plus, human factor/read stupidity, of course.I advise you to call 1-937-264-8551 to natural healer Bette Roebuck, and ask her if she can help you with your pain and other problems. She helped me already several times with very serious conditions, and I am going to contact her again about my heel.She does not charge anything for talking with you, and she will tell you if she can help.She is 65 years old african american woman from Mexico, and she does a good job for people like you and me.Olga
    Anonymous 42,789 Replies
    • September 7, 2008
    • 06:21 AM
    • 0
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