Elizabeth’s Story

Elizabeth, Chondrosarcoma SurvivorDedifferentiated Chondrosarcoma (IIB) at the Pelvis
With lung mets
Age at Diagnosis: 22
Year of Diagnosis: 1967
Location: California

Diagnosis: I first saw a doctor at age 16 for lower belly pain. X-rays showed a lesion then but it was mistaken for an old fracture. I was treated for “constipation” and sent home. I ignored the pain problems until I had my first child. During labor the doctor determined that I had tumor in the way of the birth canal and delivered Caesarian Section. It was believed the tumor was benign. I didn’t know to question this until a couple years later when I could feel tumor growing outward. An orthopedic surgeon removed it without sufficient margins, believing it to be benign. Two and a half years later it had grown so large that it interfered with walking, and standing for any length of time. Deep aching pain awoke me at night. I saw a local orthopedic doctor who took an x-ray and told me I was just overweight. But, what I saw on the x-ray looked like a big cauliflower, so I went for a second opinion to another orthopedic surgeon in town, who immediately referred me to an orthopedic oncologist at the University Hospital in the nearest big city. I didn’t want to go that far until this doctor warned me that this was “serious”, and I “Must” go see this other doctor. I still, at that time did not understand that it was anything more than the hereditary bone bumps I was born with.

Treatment: Even though the Orthopedic Oncologist prepared me to have a full Hemipelvectomy, once he cut me open he decided to do an Internal Hemipelvectomy. Surgical removal of the right pubic ramus and right ischium all the way over to the acetabulum was performed. Pelvic floor muscles, and lymph glands were removed. Some muscles placed in different locations. Vaginal wall, bladder and partial rectum reconstruction were done as well.

Recovery: I was in the hospital a total of seven months that year with five surgical procedures done, the last one being my first recurrence. Originally I was not expected to walk again, but after the first three months I did. Physical issues that have bothered me the most were recurrent vaginal and bladder infections, bowel difficulties, and permanent pelvic intramuscular instability. I had to give up my favorite sports to avoid injury, skating, basketball, running and bicycling. I was very depressed about a lot of this.

Metastasis: I had seven recurrences from 1967 to 1980. I was told I had metastasis in 1991. Both lower lungs had multiple small nodules. The right lower lobe had the largest nodule in the back. This one continued to grow the next year until it reached 2.2 cm and has not gotten any larger. The smaller ones have mostly disappeared. The larger one has calcified. I went for four different opinions. Three agreed it was mets, one offered no treatment, one offered to pluck them out by broncoscopy, one offered to break my rib and do partial lobectomies (portions of lung removal), One said it was granulomas caused by Histoplasmosis and pneumonia. I chose to believe the last one. By regular doctor did not and ran tests which proved I had never had Histoplasmosis. By this time I had moved away to another location and the thoracic surgeon I saw then was well qualified to diagnose chondrosarcoma and told me this is what it was and scheduled me for surgery, which I did not have. I still have them in my lungs. “Stabilized, indolent” is what my present Oncologist call them.

Life Now: I have permanent ongoing disability due to the musculoskeletal changes which have caused my sacroiliac joints to degenerate severely. I am still able to walk upright sometimes with cane or walker. Very rarely need the wheelchair. I have an autoimmune disorder that flairs up once in a while that requires me to continue to be careful of my good health. This is probably due to receiving a clinical trial in 1971 to immunize me from my cancer.

Thoughts and Hints for New Patients: Watch out!! Beware of all your well-meaning friends, relatives and strangers who just know they have the absolute best cure for your cancer right there in the kitchen cabinet, or just over the border for a small fee, or maybe a big fee, but it’s worth your life, isn’t it?

It is your body. It is your health. It is your life. You are the one to make the final decisions on what treatment options you will choose. Educate yourself, by asking qualified medical staff for answers, plus read the evidence for yourself. If you do research on the internet make sure you understand just how reliable and scientific are your sources. Best place to start is pubmed. Learn the difference between scientific evidence and anecdotal evidence.

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