Diagnosis: I am a 51 year old nurse who had a growth at the top of my sternum for 2 years. Over that time I asked several doctors who did not know what it was, and said not to worry. At one point, a nurse practitioner ordered a chest x-ray and since nothing showed up on it, she also said not to worry. I have asthma and see a pulmonologist every year so when I came back for the second year and it was still there, he ordered a CT scan. On Dec.14th of 2004 the CT report indicated a 2.7 cm tumor, possible chondrosarcoma and recommended biopsy. He referred me to a surgeon. On my first visit he told me he didn’t know what it was and that he would have to “hit the books”…when I came back, he said it could possibly be benign but that if it was chondrosarcoma he would not be able to treat it. When I asked what the next step was, he said “biopsy, I guess”. …and I was sent upon the path of blood work and scheduled for an aspiration biopsy in 2 days. At this point I was anxious to get some information of my own and began a literature and internet search. I also called my neighbor who is a pathologist at the hospital where I work, to ask him to look at my slides on the following Monday. When I explained to him what was happening, he recommended that I NOT have the biopsy for two reasons. One was that it would not give him enough information to make a sure diagnosis and secondly that since radiation and chemotherapy are not very effective on this type of cancer, he didn’t want to do anything that might encourage metastasis.

I then moved on to a lung cancer clinic at the university hospital, with the idea that the cardiothoracic specialists would be in that clinic. I had an MRI with contrast and a bone scan. By Jan 14, 2005..the tumor had increased to3.7cm according to these tests. This team of pathologists, radiologists, oncologists and CT surgeon had a plan to do an open biopsy and debulking, then a series of radiation and then surgery to remove the top of the sternum (manubrium) along with the tumor. I am a runner, triathlete an swimmer and I could not cope with the idea of not having a reconstruction plan in place before the first surgery.

Treatment: In the meantime, a friend took my CT films to her friend who is a CT surgeon at Emory University Medical Center in Atlanta, GA. He knew exactly what he was looking a right away and recommended a surgery to remove the manubrium and any affected tissue and using the combination of mesh and methylmethacrylate. It was a big decision to leave home and everyone I knew here, but Dr. Miller and his office staff and colleagues were so sure and compassionate that I trusted them. I went down there and saw the oncologist, plastic surgeon and CT surgeon and did all the pre-op on Wed and Thurs, had surgery on Fri, Feb. 4th, 2005 and drove back to Lexington with my family on Monday, Feb. 7. They had a pathologist during surgery and they were able to save the heads of my clavicles. My neck muscles were shortened some and they took the pectoral muscles off and replaced them across the top of the prosthesis. This combination made my neck droop and my shoulders rotated inwardly. Originally, it was thought that I might have to spend some time in ICU but even though they removed some of the lining of my lung, and with my history of asthma,I was able to go straight to a regular room.

The final slides showed a Grade 1 chondrosarcoma with adequate margins and no need for further radiation or chemotherapy.

Recovery: As far as hospital stay, my family and I were made quite comfortable. I do wish there were a better system for pain control. I had a morphine PCA but it only made me nauseated…which caused other problems. There were other things that we discovered on our own that I would love to share with other patients. Getting a bra on as soon as possible was a big relief . Using a pillow to splint when walking, coughing or sneezing was a big help. Even though I was walking in the hallway, taking stool softeners, etc., constipation was a problem for a long time. Even though they did not routinely recommend physical therapy, I had a PT friend who came and got me started on post op day 2 and that made a big difference. She encouraged me to sleep completely flat and to use good posture from the beginning to stretch out the neck and pectoral muscles. It was not easy, and I did get discouraged, but at 5 weeks or so, my neck muscles seems to kick back in suddenly and I could lift my head up from the floor or bed. At 8 weeks my pectoral muscles woke up and that was such a relief to my back since it had been carrying the weight of my arms.

Life Now: It’s been close to 10 weeks now and I am back to doing office work, driving some, riding the stationary bicycle and working on range of motion and strengthening for my arms and upper body. I have very good motion in my shoulders, but they say I may not be able to swim like I did. I am only taking 200mg. of ibuprofen every 6 hrs. during the day now.

Thoughts and Hints for New Patients: I was so amazed, even being a nurse that I really had to be the one directing my own treatment. I even called the case manager at my insurance company thinking they could give me advice about what specialist to see or something but they didn’t have any advice to give. I would say to learn as much as possible before you agree to any treatment and to expand your search outside your hometown…My insurance even paid some on this out of town medical care since the 3 procedures they recommended here would have cost more in the long run.

As someone told me, when you first find out “It’s just the darkest hour” you can go ahead and grieve and then once you move on and start planning, it gets better.

Chondrosarcoma at the Pelvis
Age at Diagnosis: 50
Year of Diagnosis: 2004
Location: Israel
Surgeon: Dr. Franklin Sim, Minnesota

Diagnosis: I saw a doctor November of 2003 and received a final diagnosis in March of 2004. The tests that were done were: Palpation, CT’s, bone scan, x-rays. The diagnosis was: Chondrosarcoma, grade I, inside the abductor muscle of the right thigh, growing from the the right pubic bone, originating from an enchondroma, which existed already for at least thirty years. I first noted problems in 1999, but only when I was sitting uncomfortably on long bus trips. In the fall of 2003, I relatively suddenly got more pains and stiffness in the right groin.

Treatment: Surgical removal in May 2004 (right hemipelvectomy) by Dr. Franklin Sim, Mayo Clinic, Rochester, Minnesota. The tumor was 12cm x 8cm x 7cm. I had a very good experience (10 days). Revalidation in nursery home for the elderly, almost as good as the Mayo clinic (16 days). Stayed an other 14 days with friends, then flew back to Israel. No other treatments.

Recovery: Physical therapy was in mentioned nursery home. I entered the nursery home on a stretcher and walked out with a cane. I stopped using my cane by the end of July, 2004. I walk quite normally now, and can even run a little bit. I do not climb as I used to. CT scans in September 2004, January 2005, and June 2005 were clean.

Life Now: In practical matters, life is just as it was before my surgery. I am a bit more tired in the evening. Spiritual matters and the like, hard to say in a few words. Most things don’t make me as nervous as they used to. But I wasn’t a nervous person to start out with.

Thoughts and Hints for New Patients: No tumor is the same as the others. Concerning chondrosarcoma, which was my problem, if you want to live, move heaven and earth to get the best treatment (surgery) possible. The first surgery very much determines what your recovery will be like.

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.

I was hospitalized September 13, 2003. I knew something was growing on my chest, but for whatever, reason, I ignored it. Then, God decided to do something about it for me. A huge blood like blistered formed on my chest and burst through the chest wall. This was the tumor that had become infected. I had numerous cat scans and bone scans, and x-rays. During this time I developed pneumonia and dehydration. I had no treatment until January 27, 2003.

Treatment: I went to several major medical center and university hospitals for opinions. I was sent to MD Anderson Cancer Center in Houston, Texas. We remained there for 95 days while I underwent pre-op rehabilitation to make me stronger for the surgery. On January 27, 2004 I underwent surgery for the removal of a 17 pound tumor, four ribs were removed, and part of my sternum. They inserted a mesh and did a tissue graft from my back to close up the hole left by the diseased tissue after they took a muscle from my back to put over the mesh. I was on life support for five or six days. I am now cancer free, 15 months. I did not have to have any kind of chemo or radiation. My lungs are being monitored now by a sarcoma specialist. This will continue for a few years.

Recovery: I thank God everyday for blessing me with a miracle. Keep the Faith. The power of prayer is awesome. I know God performs miracles, I am One. I have had no cancer related problems since my surgery with the exception of they are watching a small spot on my lungs. However, they believe this is only scar tissue. I have made a full recovery and am better than I have been in years. I did just undergo two surgeries for kidney stones. I have been dealing with them for the past year.

Life Now: I am leading a normal life. I have to wear a medical alert bracelet because of my chest reconstruction. I have no bone in the upper part of my chest. You can see my heart beat. I have to be careful about falling. I do alot of exercises on my glider, walk, read, love computers, my church, my family. I do crocheting, and crafts. Actually, I am better now that ever before.

Thoughts and Hints for New Patients: Make sure you have someone with you when you see your doctors. Write everything down. Get copies of all your medical reports. Fight for yourself. Remember Cancer is not a death sentence. The word and disease are terrifying but research has come so far. Keep the faith. The power of prayer is awesome.