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.

Diagnosis: In November 2001, whilst visiting an orthopaedic surgeon for one of my children’s sprained ankle, I mentioned to the doctor about painless hard swelling at top of sternum. He sent me for x-ray which diagnosed “probably calcifications, nothing to worry about.” He prescribed anti-inflammatory cream!

At 44 years old, in October 2002 whilst visiting same orthopaedic surgeon, again regarding one of my children, pointed out to him that the swelling seemed to have increased in size and area involved. More x-rays, then he wanted a biopsy.

I went to other general oncology surgeon who immediately sent me for MRI, where diagnosis was most likely chondroma tumor or maybe anuerysmal bone cyst. Surgeon recommended removal of tumor together with affected bone; probably reconstructive surgery would be needed; recommended going abroad where good experienced surgical team could operate (said such a team was not available in Cyprus where I live).

Treatment: December 2002, 8 hour surgery for removal of upper sternum, ends of 1st 3 ribs and heads of clavicles, with methylmethylacrilate hardened marlex mesh shaped to cover void, by Geogre Ladas, Consultant Thoracic Surgeon at Royal Brompton Heart and Chest Hospital, London, UK. 4 weeks later histopathology report arrives: chondrosarcoma grade 1, focally grade 2 – a real shock as I had believed it was benign until then. No further treatment was recommended.

Recovery: Slow but steady recovery. Had to stay in UK for 1 month after surgery as unable to fly due to both lungs having been routinely collapsed during surgery. Had physical therapy 3 times weekly for 3 months: heat treatment, ultrasound and very light arm exercises (due to having had ends of clavicles removed). Not convinced I had enough or of the right kind of therapy as I was back in Cyprus. I have follow-up MRI alternating with CT scans every six months or so which I send copies to surgeon in London. All clear so far. I visit surgeon in UK annually.

Now, 2.5 years on, some pain / discomfort most days, especially in the morning when I wake up because, I suppose, of lying in same position too long. Prosthesis has become detached from clavicle on right side, and on left side seems to “go out of joint” after certain movements, but sometimes for no reason at all. Surgeon says it can be repaired but would involve major surgery, so I have decided to learn to live with it.

Life Now: Life goes on within new limitations. I have 4 children, now aged 7-17, so am kept busy. It was hard on the children when I was away 7 weeks for surgery, especially the youngest who was only 5 then and couldn’t understand why mammy was away for Christmas and new year and he couldn’t come to stay with me. More sedentary lifestyle now, limited weight-bearing, have become terribly unfit!

Thoughts and Hints for New Patients: Find out all you can as early as possible. I found a chondrosarcoma support group 6 months after surgery. Thankfully, my surgery was carried out by an experienced surgeon who seemed to know what he was dealing with and took margins – very important as I now realise.

Don’t despair – medical miracles are being carried out.

Get other opinions if possible so that any decisions you have to make are informed decisions.