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| Date Entered at Shared Experience: 04/20/2004 |
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SARCOMA SKELETAL |
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I was diagnosed with PAROSTEAL OSTEOSARCOMA in my right proximal humerus in October of 2003 at AGE 28. Here is how that came about...
At age 25, I developed a lump on my right shoulder after hitting it hard on a piece of workout equipment. I thought nothing of it, even when the lump didn't go away. I waited three years (DUH) to get it checked out, thinking that I might have something called myositis ossificans...an injury that can sometimes cause bone to grow. The tumor had grown so slowly and slightly that my husband and I kept telling ourselves maybe it wasn't growing at all (it was actually 9 cm long by the time it was removed.).
I went in to see a doctor in September of 2003. From the moment I saw the x-ray it was obvious that something was wrong. Within five weeks, I had a nuclear bone scan (painless) of my entire body, numerous x-rays, and an MRI. All were "inconclusive" and led the doctors to do a surgical biospy. I chose general anesthesia, and that was difficult. If I could do it again, I would have had local anesthesia and saved the general for the actual surgery. |
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The time between the biopsy and the surgery was the most difficult. They wanted to make sure that the cancer had not spread anywhere else, so we started off with a chest x-ray. A small nodule there led to further tests and an appointment with a surgeon, but all was okay. The nuclear bone scan showed them several areas that should be looked at on x-ray to ensure there was no other bone cancer or disease. There was a liver abnormality that turned out to be benign, a colon abnormality that required follow-up tests and went away on its own....and more. By the time they finally okay'd me for surgery, I had had about 20 x-rays, three MRIs, and 4 CT scans. It was grueling and terrifying, wondering what they would find next. But they concluded that the cancer was localized to my humerus bone and scheduled the surgery in December of 2003. No pre-surgery chemo was required.
My surgery involved complete removal of about 16 centimeters of my humerus, including the "ball" of the humerus. It was replaced with a titanium "endoprosthesis" that is attached into my healthy bone above the elbow with cement. There is also donor bone (allograft) encircling the titanium rod that is attached to my healthy bone with a metal plate and six screws. This will provide additional stability for that metal rod when the donor bone fuses with my bone. There is an x-ray of this new arm located on my website at http://www.marysorens.com.
The surgery was supposed to take about 3.5 hours, but it actually took 7 hours. My surgeon decided to take all of that extra time to try to make as many repairs as he possibly could in my shoulder area. This type of surgery requires major reconstruction of the rotator cuff muscles, tendons, etc. It is so important to have a good surgeon who has done this before. It is important to get a wide margin around the tumor (including removing muscle, extra bone, whatever) to get all of the cancer cells. Luckily, in my case, it appears that they removed them all. Most parosteal osteosarcoma does not spread to other places in the body, but ten percent of cases are at a higher stage. Mine was not, so I didn't have chemo after surgery.
The recovery from surgery was much slower and more painful than I imagined. It is crucial to have family members with you at the hospital to ensure that your pain is being managed properly by the nurses and doctors. I was on morphine pills for about three weeks after surgery. My arm was immobilized for six weeks after surgery in a sling with a "pillow" between my arm and my side.
I will have follow-up x-rays for the indefinite future to ensure that cancer isn't recurring in my arm. |
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Six weeks after surgery, I was able to start very basic movements. After 12 weeks, I started physical therapy three times a week. There is very little strength in my arm, even after months of physical therapy, due to removal of muscle and muscle atrophy. Therapy should take about a year, and it's not bad. There have been minor setbacks, like bursitis and impingement that can be extremely painful. But it's all in your attitude. Therapy is definitely about attitude. Making a connection with the therapist, talking and laughing while you're working, will make the process much more livable. Nobody likes therapy, but I have heard other people's approaches. The people who are negative are miserable in therapy. And you can't afford to be miserable for a year of your life! So I stay quiet about the pain (unless it's unbearable) and try to focus on doing everything I can to get a useful arm back.
The important thing to remind yourself about this type of surgery is that, while it is major and life-changing, it is a BLESSING. Up until recently, the only treatment for this type of cancer was amputation. While at times the recovery gets so difficult that amputation would have been an easier choice, I have also learned just how much having this arm means to me. There are so many things that you can't do without two healthy arms. So it's important to focus on the fact that I have an arm, and that it will get better!
There will be many things that I can't do with my arm again. It will never reach straight above my head again. I will never lift heavy items again or paint walls or shoot baskets. But there will be many things I can do, and chances are I will be cancer-free. |
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This is a very rare cancer, so there is not nearly as much information on the internet as there is for other cancers. It affects people at around age 27, and it affects more women than men. Here is the best information I found:
PAROSTEAL OSTEOSARCOMA
http://bonetumor.org/tumors/pages/page23.html
http://imc.gsm.com/demos/mskdemo/mspath/enneking/sect14/parost.html
Surgery:
http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Surgery_52.asp?sitearea=
If you have parosteal osteosarcoma, it is important not to let the information scare you. You will read several times about "dedifferentiation," which means that the cancer has moved to a higher stage and is much more dangerous. But that does not happen very often, and it will be very helpful to assume that you will be one of the 90% that never has to deal with that.
You'll also read about the possible complications after surgery with the endoprosthesis. I have found that in order to give recovery all of my effort and to give myself the best chance of success, I don't think about what "might" happen. Sure, the shoulder could dislocate or the rod could loosen, but there's nothing I can do about it. What I can do is make the most of the arm I still have for as long as I have it! |
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