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I was recently diagnosed with a rare form of cancer called clear cell sarcoma. The cancer is in my foot. I wanted to share my story with others who may be diagnosed with this rare form of cancer, since there is virtually nothing on the internet about my condition. I am having my left foot and the lower half of my leg (under the large muscle) amputated on August 12, 2005.
About a year ago I started having a funny feeling in the heal of my left foot. When I woke or took my shoe off, and put direct pressure on my heal, I would get a funny twingey feeling in the foot. I blew it off as my imagination and did nothing about it.
December 2004: I noticed a bump forming, right above my heal, under my ankle, going towards the arch of my foot. I knew that wasn’t supposed to be there but it wasn’t bothering me so, again, I did nothing about it. Over the next couple of months the bump started getting larger.
March 2005: I went to a general physician who works upstairs from where I work. He looked it over and told me it was a benign tumor. He said not to worry about it because it wasn’t cancer and suggested that I go to an orthopedic doctor. He gave me the name and number of one and said to go see him when I could. I didn’t have health insurance at the time, because my job doesn’t offer it. Since the doctor said it wasn’t cancer, and it wasn’t bothering me, I decided to see the orthopedic doctor after my now husband and I got married. I would have insurance then. Over the next couple of months it would, on occasion, become uncomfortable; but it never gave me a lot of pain.
June 19, 2005: My foot woke me up from excruciating pain just out of the blue. It hurt all day and all the next day. I had my husband take me to St Agnes Hospital's ER. I saw the doctor and told him how long I had this mass. I told him that I had seen another doctor in March and that I had been told that it was a benign tumor. The ER doctor ordered 3 x-rays. After he looked them over, he said it wasn’t a tumor. He thought it was an abscess. He told me and my husband that he would have to drain it. I was reluctant for him to do this, but he said it would be better then being in pain. He proceeded to put a syringe in the tumor and try to aspirate it. Nothing came out. He said he needed to lance it and proceeded to cut about a 3mm size slice in my foot. Nothing came out except some blood. The doctor at this point was scratching his head because he had no idea what this thing was. He discharged me with a prescription for some antibiotics. He also gave me the names of the hospital clinic and a podiatrist that he knew. He told me that the bleeding would stop within the hour and that I should call these places in the morning and be seen by someone else.
The next morning I tried to get appointments with the clinic and doctor he referred me to, but they wouldn’t see me for several weeks. I knew I couldn't wait that long to be seen. I was in a lot of pain and my foot was still bleeding. I tried to call a few other doctors that I had looked up in the phone book. They all told me the same thing - I would not be able to get an appointments until sometime in August. I hadn’t changed the bandage because I would literally get nauseated looking at it. After my husband came home from work that night, I had him remove the bandage to see if the bleeding had stopped. It hadn’t. He tried to call the ER and they told him they would not let him speak to any doctors. We would have to go back there if we wanted to talk to someone. We knew if we went back we would be waiting all night again. My husband suggested that we go to Johns Hopkins ER in the morning.
June 22, 2005: My husband and I went to Johns Hopkins and got seen almost immediately. My foot at this point was still bleeding and very sore from being poked, stuck, and lanced. I couldn't even let the nurse practitioner put her fingers on it. She ordered 6 x-rays of the foot. After reviewing the x-rays, she couldn't determine what this was; but she knew it was not an abscess. She called the orthopedic doctor that was on duty and he came down. He looked at the x-rays and my foot and determined it was a tumor. He could not tell me if it was cancer or not. He referred me to his boss - the head orthopedic surgeon and tumor specialist. I called her office the next day and was able to get an appointment with her on June 30, 2005. At that appointment, she looked over the tumor and my x-rays. She told me that she thought it might be cancerous, but she wanted to biopsy it.
July 6, 2005: I got the results back from the biopsy. It was cancer! She told me what kind of cancer it was but, I couldn’t remember that after I hung up the phone. During our conversation she said that this type of cancer likes to travel in the blood stream and settle in the lungs. I was frantic, which is why I couldn't remember what kind of cancer it was. She said I needed to have a CT scan of my chest and an MRI of my foot. I had the MRI and CT scan on July 14, 2005.
July 15, 2005: My doctor called me to let me know that the cancer had not gotten into my upper body. She told me the type of cancer and asked that I and my husband come in and discuss what we were going to do next.
July 22, 2005: My husband and I went to her office and reviewed the MRI of my foot with her. The tumor had spread into my tendons, under my foot, and formed another small tumor. She said my only form of treatment at this point is to have the foot amputated. She told us she had consulted with her team of doctors. They said that because of the tumor location and rarity, they aren’t sure how to treat it, except with amputation. They believe that radiation and chemo would not benefit me at all. In fact, it would just prolong matters and give the cancer a chance to spread even further.
The doctor said if I was adamant about not letting her amputate; then she could not guarantee the removal of all of the cancer. She said the cancer could be removed by just cutting it out, but it could possibly spread into my bone. Because of where the tumor is, this surgical removal could cause too much nerve and blood vessel damage. I would also have to have skin grafts and reconstructive surgery. Also, there would be no guarantee that I would ever have full use of my foot, and the foot would never look normal again.
My Future Plans: Obviously, I am choosing amputation. While I’m having my amputation surgery I also have to have a sentinel node biopsy of my groin. The doctor said this cancer also likes to metastasize there. She doesn’t think it has, but she wants to be 100% sure. I have to be at the hospital a couple of hours early before my surgery so they can inject a dye into my foot that glows and goes right to the sentinel node. I have to see an oncologist on Tuesday August 2, 2005 to see if the sentinel node biopsy came back cancerous. If so, we would go over treatment options during that appointment.
The doctor also gave me a prosthesis prescription and the number of a specialist. My husband and I go to see the prosthesis specialist on August 8, 2005. The reason for the prosthetic consult is so that I’ll have a temporary prosthesis ready, after I wake from the surgery. After surgical recovery, in about 6 to 8 weeks, I’ll be fitted for the permanent prosthesis.
That’s my story, so far!: I wanted to tell it since this is such a rare cancer, and I wanted to speak with others who may have had cancer related amputation. I have never had any kind of surgery before. To have my first surgery, and such a traumatic kind of surgery, is very overwhelming and very emotional for me. I could use all the support I can get. Thanks.