I never had any pain or discomfort. One morning as I was taking a shower I felt a knot on my back.  I immediately called my family doctor and he suggested I have a CAT scan. That afternoon, I was told that there was a tumor on my 9th rib. At first the doctors here thought it was benign after needle biopsies. Then, during an aborted surgery, the surgeon knew it was something much different, took a larger biopsy, sent it to Mayo, and closed me back up.

Mayo returned the verdict, osteosarcoma, and within two weeks I was on my way to M. D. Anderson Cancer Center in Houston, Texas, where Dr. Wayne L. Hofstetter, a wonderful thoracic surgeon, removed the tumor and two ribs (8th and 9th) on the left side of my body. Dr. Raymond, a pathologist at M. D. Anderson upon receiving Mayo’s diagnosis, questioned if the tumor might not be a periosteal osteosarcoma as a result of the grade. He was correct. Once removed it was determined that it was periosteal osteosarcoma and it had invaded the bone marrow for 7mm.

As a result of the bone marrow invasion I took a tough regiment of chemo at M. D. Anderson Cancer Center during 2005. While Houston did not have any bad weather from Hurrican Katrina, I was evacuated during Hurrican Rita.

Since my diagnosis, the osteosarcoma has returned twice, once as a lesion on the back of scalp (removed in April of 2006) and once in the middle lobe of my right lung (removed in May of 2008). I have returned to M. D. Anderson every three months since 2005. My sarcoma doctor is Dr. Shreyaskumar Patel. In February of 2009, he agreed to allow my local oncologist, Dr. Christopher Croot, to order scans here in Mississippi every other three months. This saves me both time and money as I will only be going to Houston every six months. I have been blessed, as my scans since May of 2008 have been clear.

Up until all of this has happened to me, I had never had any type of major surgery. I have been blessed with rather speedy recoveries from my surgeries. I have never had any major pain but I don’t think that I was mentally or physically prepared for the chemo regiment that I had in 2005…no pain but tired and sick at my stomach all the time.

Through all of this, my Christian faith and the support and care of family and friends have carried me thus far in my struggle with periosteal osteosarcoma.

Periosteal Osteosarcoma at the Rib
Date of Diagnosis: April 2005
Age at diagnosis: 47
Location: Mississippi, United States
Hospital: M. D. Anderson Cancer Center, Houston, Texas

Diagnosis: My PNET (a form of Ewing’s Sarcoma) was first diagnosed in June, 2004. It arose from morphed teratoma cells from my previous diagnosis of testicular cancer, which I had been diagnosed with in November 1998. While I had been treated for the testicular cancer, having had an orchiectomy in December 1998, follow-up chemo in June 1999, surgery to remove my first teratoma in my neck in November 1999, and three subsequent resections for new teratomas in my chest (9/2001), neck (same spot – 11/2002), and abdomen (6/2003), in late 2003 and early 2004, I started to have some back pain, which I was unable to relieve. I have had a history of back problems, so this didn’t seem to be anything different. Unfortunately, on June 16, 2004, I started to lose some of the feeling in my legs and was admitted to the hospital, where an MRI revealed multiple lesions in my spine, including one pressing against my spinal column. A biopsy revealed a new germ-cell tumor and my original oncologist misdiagnosed it as more of the same testicular cancer. At this point, I contacted Dr. Larry Einhorn at Indiana University, who diagnosed my condition right over the phone (which was totally amazing). A follow up appointment with him in Indianapolis less than a week later confirmed that I did indeed have PNET and apparently this could arise from mutant teratoma cells from testicular cancer.

Treatment: Because the PNET has metastasized throughout my skeletal structure at this point, there is no possibility of doing any surgery. In July 2004, I began the first round of radiation to my spine, which effectively destroyed the tumors; PNET fortunately is extremely radio-sensitive. The radiation was followed with the customary Ewing’s chemo regimen of six cycles of the three drugs + two drug protocol. This lasted until the end of 2004. As I had had chemo before, I wasn’t concerned about the intensity of the treatment. However, I did end up in the hospital on eight separate occasions with cellulitis and neutropenic fever due to the chemo. It wasn’t until I had a port installed that the cellulitis stopped. As of December 2004, I have been receiving Zometa every 4-6 weeks to strengthen my bones.

In July 2005, I ended up with new pain/tumors in different parts of my spine and in my left hip. Those areas were radiated and the tumors killed. In September 2005, I started receiving Avastin in the hope that it might keep the cancer at bay. Unfortunately, in July of this year, I discovered a mass on my left flank. CT scans revealed a tumor extending from my lower left rib, as well as a tiny mass extending from another rib into my lung. I also started to develop pain in my right shoulder and further scans have revealed tumors in my humerus and sternum. I am undergoing radiation for all of these areas, but am most alarmed by the rapid increase of cancer activity over the last two months.

Recovery: Recovery? What recovery? I feel I am always in a state of watchfulness, waiting for the shoe to drop. While I have been fortunate to have had some extended periods with virtually no symptoms, I know that these are just lulls before the next onslaught. My hope is to consult with specialists at Memorial Sloan-Kettering to determine if there is another protocol I can use to help prevent the continued recurrence. While the radiation is always effective, I need to find some better systemic agent to prolong my life.

At this point, I am constantly dealing with pain issues. However, I do consider myself quite fortunate that I can walk, drive, and basically function normally for the time being. And I intend to keep doing this for quite a while.

Life now: My life would be fabulous if I didn’t have this stupid disease. I and my partner, Michael, are about to relocate after having sold all of our real estate holdings in South Florida. We own a successful business and while I am currently on disability, the plan is for us to move our business and then take a year off and travel. While we could afford to retire, I know my partner would go crazy not doing anything (he’s only 41). I, however, will hopefully be around, fully retired, sitting around the house eating bonbons, watching all of my recorded TV shows and Netflix, enjoying my new home, spending money, and not working at all.

Thoughts and hints for new patients: The most important thing to remember is that you just have no idea how much time you have, so you’d better enjoy every minute you’ve got left. When I walked into Dr. Einhom’s office in July, 2004, he said to me, “Oh, I see that you still walking, that’s good,” which I took to be an encouraging sign! And while he wouldn’t give me a prognosis, he did indicate he had a patient who was still living with the disease 2 1/2 years after diagnosis. While I knew the outlook was serious and I don’t want to kid you and let you think that I never get depressed, the reality is that I’m still alive and walking and that’s what you have to stick with. In the past two years since my initial Ewing’s diagnosis, I have been on trips to Germany, Key West, FL, Hawaii and Amsterdam, and am off to Oktoberfest in a week in a half. While I do sometimes have considerable pain, I pop the pain meds and keep going. You just can’t give up – that cure is just around the corner and I intend to live to see it.

Diagnosis: I first saw my doctor in the fall of 2005 as I was having pain and a tightness feeling in my chest, back pain, a dry cough, shortness of breath, and a few other minor symptoms. It was thought that I had allergies then asthma then walking pneumonia. I was sent for many tests (X-ray, CT scan, etc.) and through those tests found out that I had a tumor in my right lung. It was 10cm in diameter. Initially it was though to be a non-cancerous weird growth of some type.

Treatment: I had the tumor and the 2 lower lobes of my lung removed in May 2006. The pathology was done and the results were that it was a chondrosarcoma and some areas of it were grade 3. I was not treated with chemo or radiation as apparently those treatments don’t help with this type of cancer. I received a bone scan (they were looking for other areas of growth as apparently chondrosarcoma starting in the lung without a past tumor anywhere else is rare). My bone scan showed no other growths. I was told that all I can do is be monitored regularly and hope that there was no regrowth or growths in new areas.

Recovery: I am breathing much better now. I have minor chest pain at times which could be from the fact that my ribs were really stretched (almost to the breaking point) to get the tumor out. Also, the remaining right lung lobe had remained collapsed after my surgery and as far as I know has not ever filled up. I still have some shortness of breath at times but nothing I can’t handle. I have chest X-rays regularly and a regular check up with the surgeon. To date there has been no further tumor growth in my lung area.

Metastasis: I have since had 3 more surgeries. I had a lump removed (Feb 2007) from my upper right leg (which, luckily, turned out to be non-cancerous) and one off my back (left flank) which was another chondrosarcoma (Sept 2007) and another lump taken off the bottom of my right leg (Oct 2007) which was similar to the one on my back so we are thinking it will come back a chondrosarcoma again. All of my chondrosarcomas have been in the soft tissue not on a bone so that is rare I guess. Nobody seems to understand that. There is concern that over the past few months tumors keep popping up out of nowhere. I am going back to the Cancer Center to discuss this issue in November (2007). I have recently had a PET scan (neck to knees) that showed no more growths in those areas right now. My head, arms, and legs had not been PET scanned so I am now waiting for a full body CT scan or MRI appointment.

Thoughts and Hints for Patients: Through all I have been through this past year and a half, I do my best to stay positive. I believe that a positive attitude really helps. On my down days I remind myself that there is always someone worse off that I am. If I have to keep fighting this ongoing battle I will keep on winning as I have many more things I want to accomplish in my life! Luckily for me I have the support of my family and many friends and co-workers to keep me strong.

Diagnosis, Treatment and Metastases: In 2004 I was diagnosed with a chondrosarcoma on my rib cage that went from the size of a prune to a grapefruit in 6 weeks. They removed the left side of my rib cage and replaced it with a plastic like rib cage. Last year, in November of 2005, I found another 2 chondrosarcomas on my knee and ankle. Due to this I lost my leg and have now had to learn how to walk again. Since then I recently have just had another chondrosarcoma where it originally occurred on my plastic rib cage.

My doctor, Professor Choong, has been wonderful each time and extremely positive for me and my family.

Life Now: Life I take every day as it comes, and appreciate each breath of air I take. My life certainly has slowed down since I have had these chondrosarcomas, as I use to be a builder. But chondrosarcoma has not stopped me from getting outdoors and giving things a go.

Thoughts and hints for new patients: This can be a very aggressive tumour, and I tell anyone out there to stay positive and keep focused. It is the one way to get through fighting any type of tumour. I sure would love to hear from other people who have been through similar experiences to me.

Life is too short, be extremely positive. Just keep checking your own body for any bump or hump. As my doctor always has said to me, any bump, hump or lump that shouldn’t be there: get rid of. Good luck.