Dedifferentiated 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.

Diagnosis: After several months of pain down my left leg which was similar to the pain I had in 1983 from a ruptured disc, I went to see an orthopedic in October, 1998. He made x-rays in his office and told me that I had a “calcium deposit” in my left hip area and the pain was just something I would have to “live with.” He suggested I see a pain management doctor for possible injections. As long as I was up moving, my pain was less, so I began walking 3 miles 4 or 5 times a week. I found I could not sit on the floor or in a metal chair as within minutes the pain would become unbearable. As 1999 came, my pain progressed to the point that my nights were spent in a recliner as I could get enough relief to allow a few hours sleep. Over-the-counter meds such as ibuprofen and tylenol were taken on a regular basis. By May, 1999, I could feel a significant growth near my waist on the left wide just above my pelvic bone. Sitting was becoming very painful. I quit my job in June, 1999, as it involved sitting at a computer for hours. As the summer passed, the pain became almost constant and the area near my waist became larger. On October 14, 1999, I had an appointment with the neurosurgeon who had performed my previous back surgery. I told him that “I can’t live like this.” He recommended that I have an MRI done. [My first granddaughter was born on October 13, 1999.] The MRI was done and I returned to the neurosurgeon’s office about October 20, 1999, when I received the news that there was a very large mass in my left pelvic area. A needle biopsy was scheduled within the next couple of days. The diagnosis was chondrosarcoma. An appointment was made for November 9, 1999, at M. D. Anderson Cancer Center with Dr. Alan Yaskco, Chief Orthopedic Surgeon. Surgery was scheduled for November 29, 1999.

Treatment: The surgery was very involved. The tumor (Chondrosarcoma Grade III myxoid) was 27 cm x 7 cm and the sciatic nerve bundle was wrapped around the tumor. Surgery was approximately 16 hours and involved an internal hemipelvectomy and sacrectomy on left side with removal of muscle, etc. I was a patient in the hospital for 41 days. [I celebrated New Years 2000 in the hospital.] Approximately 2 weeks after the initial surgery I had to go back to surgery and have some debriding done to the incision as a skin flap had not survived. Because of stretching of the sciatic nerve, I have foot-drop on the left foot and diminished sensation in my left buttock, leg and foot. Laminectomies from L-4 to S-4 were also done. By the time I was able to return home, I was able to use a walker for very short distance and able to get out of bed with assistance. My incision began in the left lower abdominal area and extended up across my pelvic bone/waist to just right of my spine and down to the end of sacrum. Home health nurses came to change dressings and check incision. Approximately 1 week after I was home, I began to run a low-grade temperature. An abcess developed in the incision near the right of the spine and down into the left buttock.

In April, 2000, I returned to M.D. Anderson to have fluid removed from the abcess. Drainage continued until June, 2000, with home health coming daily to flush and pack the abcess. A rather serious problem developed in early June when one of the nurses failed to remove all of the packing from the wound, but thanks to my local physician and strong antibiotics, this was nipped in the bud. Finally the wound closed and I was able to begin serious physical therapy.

Recovery: Finding a local physical therapist who knew how to work with my physical limitations proved to be an effort, but on the third attempt I finally found someone who “got it.” Working with her, I moved from using a walker to forearm crutches to a quad-cane within three months. Because of the instability in my lower back, I continue to use a wheelchair for 90% of the time. I can walk for short distances with my cane but have found that if I push myself to walk, I develop considerable pain in my hip and leg. Also, with the foot-drop I have to be very careful or I will drag my foot and have come close to falling numerous times. Further, I have developed mild scoliosis as a result of my body making adjustments to keep me up straight. Also, there is considerable deterioration in my pubic symphysis. (I have only fallen once but managed to fracture what remains of my “tailbone” in that fall.) I can pretty much do most of my housework with the exception of changing lightbulbs and cleaning the top of the fridge…I’ve learned to mop, vacuum, etc. seated in my wheelchair. Most everything just takes a lot longer to get done.

Other than learning to make adjustments in what I could do physically, after the first year I had no new problems until November, 2003, when CT scans showed 5 tumors in my lungs. We are now “following” the growth of these tumors…two in left lung and three in right. They continue to exhibit very slight growth and remain smaller than 1 cm. At my last check-up on March 30, I was advised that it is time to “get them out” to avoid seeding new tumors. I am currently researching options to surgical removal.

Life Now: Life goes on. In May, 2003, my second granddaughter was born. That fall I was able to keep her for two or three days a week while her mom taught school. I amazed myself at how I managed as she grew over the next year. Thankfully, I had days to “recover” before my next round of “sitting.” I really loved every minute of it.

During that first year following surgery, I found myself dwelling on the things that I could no longer do, but I finally learned to search for the things I could do and before long I found that those outweighed the “I can’ts.” Lots of things I do now are just done in a modified manner. I have had to learn to depend on others for help in many areas and I have had to learn to accept that help. (This was really hard for me as I have always been very independent and impatient.) I have a golf-cart that lets me get around my yard and the 35 acres we own, so I can follow my hubby when he’s out and about. The large flowerbeds are diminished in size to lots of containers and small beds that I can reach from my golf-cart. I never really had a green-thumb anyway! My little granddaughter doesn’t understand why I can’t pick her up when I am standing, but she lets everyone know that “mamaw’s” wheelchair is off-limits to them. When I am sitting in the wheelchair, she backs up to me so that I can pick her up. She did this on her own when she started walking.

At times I miss “working.” Then I only have to listen to some of my friends for a few minutes about how anxious they are to retire because of the stress of their jobs, and I am thankful that my disability check is deposited in my checking account each month and I don’t have to leave my house.

I continue to return to M. D. Anderson every 3 or 4 months for check-ups. About twice a year a couple of my friends go with me on these trips which then become “fun” trips instead of boring medical tests and appointments. We have made lots of special memories these past several years because of the time we have spent together due to my “illness.” We would probably never have made trips together had it not been for the change in my circumstances.

My faith in God is stronger now because I have had to learn to lean on Him so much more, and I think that I value people and life more. There are so many things that I took for granted before surgery that I appreciate so much more now. (Try putting on shoes without being able to move your toes. And pantyhose! What a sight!) I have begun to understand that God really does have a sense of humor and that laughter really is great medicine.

There have been days when I have cried and yelled and had major pity-parties for myself because of something I couldn’t do, and there was a period of several months when Prozac was necessary to make life livable (my husband’s life was much more livable during that time when I was on Prozac.) So, don’t berate yourself if you have those days or weeks. After all, we’re only human.

Thoughts and Hints for New Patients: Don’t give up hope! Just because you have been diagnosed with cancer, that doesn’t mean you are going to die from it. It just means that your life has taken a different turn. Learn to make adjustments. Let people help you. Go to the specialists even if it means hours of travel time. It is your life and you do have input into your medical treatment. Find a support group either locally or online. Start a journal and keep it up. I started one but didn’t keep it up and I really wish I had. My opening line was…And so the journey begins… Well, here I am 5 1/2 years later and I’m still on this journey.