In June of 2008, the tumor was resected, my arm salvaged and rebuilt, and I have a good functional result from that. I underwent a humeral implant w/ a total elbow Arthroplasty. The hand works great; the shoulder works great, although I have significant reduced ROM in the elbow joint. Being that no good treatment exists for this very rare cancer, I still underwent 4 rounds of chemo (Ifosfomide/etopicide a Ewings Sarcoma treatment), and 35 treatments of radiation to the tumor bed.

Fast forward to March 2, 2009. A CT of the chest w/contrast revealed 2 nodules in the lungs. (1) in the upper right lobe, medial to posterior, approximately 1.2cm x 1.7cm, and (1) in the lower left superior lobe. Both operable. On March 16 of this year I had the larger one removed in the right upper lobe, through a VATS thorocascopy procedure. It was confirmed as Metastatic Sarcoma in a De-Differentiated Cartligious Mixoid Stroma. A portion of that specimen has been sent to Rational Therapeutics in California, and is being directed by Dr. Jeffrey Morgan at Dana-Farber in Boston. A cell line has been started, and while I recover I’m flying to meet Dr. Robert Maki at Sloane-Kettering in Manhattan.

I’m about to enroll in a Phase-Ia clinical trial at Dana-Farber where we’ll see what results GDC-0152, a targeted molecular therapy drug has on me. Right now, and prior to this treatment, 16 different traditional chemotherapy drugs will be tested on my tumor to see the response. Being a De-Differentiated Chondrosarcoma, the cells are expected to be insensitive to the drugs, but protocol is required. They’ll also be testing a new inhibitor, due for release in April 2009. It’s protocol still not approved. I will be the first Chondrosarcoma patient to receive some of these new drugs. The paradigm in cancer treatments is shifting rapidly right now, and on the edge is where I must live.

De-differentiated chondrosarcoma at the distal humerus
Date of Diagnosis: May 2008
Age at diagnosis: 42
Location: Orlando, Florida
Surgeon: Dr. Douglas Letson – Moffitt Center
Oncologist: Dr. Robert Reynolds, Dr. Jeffrey Morgan (DFCI)

Diagnosis: In June of ‘88 (when I was 15 years old) I’d been having pain in my left arm — I thought I’d been hit by a softball and that’s what was causing the pain. Luckily, we were sent to Children’s Hospital pretty quickly and within just a couple of days I was diagnoses with osteosarcoma of the left humerus.

Treatment: I had 2 rounds of pre-op chemo (cisplatin and adriamyacin), following by an 8-hour limb-salvage operation where they removed almost my entire humerus and replaced it with a metal prosthesis. They rearranged all my muscles and removed the deltoid muscle. 4 more rounds of chemo followed.

All was well for almost 2 years — then I got the dreaded recurrence to the lung. They removed one thumbnail-sized nodule and I had an additional 10 rounds of chemo (Vp-16 and ifosphomide). Then, I went to MD Anderson in Houston and did an experimental treatment called MTP-PE that utilized the body’s own immune system to fight of cancer cells.

Recovery: I’ve had my share of scares (something showed up on alung CT about 5 years ago that ended up going away on its own). Had a scare at the beginning of 2008 with really bad arm pain, but it’s subsided. (It was most likely due to lifting my 14-month-old son regularly!)

Life now: I’ve been cancer free since 10/1990 and off all treatment since June 1991. I’m happy, healthy, married and have a 1-year-old son (conceived naturally — after one month of trying (I was sure I’d end up with some medical intervention given all the chemo I had).

I still have issues with doctors and hospitals and get anxious with every pain and chest X-ray I need to have.

Thoughts and Hints for New Patients: – Don’t be afraid to question doctors. They are not infallible.

- Learn how to work the system. If you’re not getting the answer you want, look elsewhere. My mom was able to get me a drug that helped my immune system bounce back by contacting people she new at NIH along with our congresswoman.

- Kill them with kindness. You’ll make a lot more progress if you’re nice to people — and learn everyone’s name — even the X-ray techs — you’ll be seeing them a lot. You never know when you’ll need a favor.

- Keep your own records. My mom kept detailed records during my admissions of when I got medicines and my blood counts. She knew when I was due for doses and got on the nurses ahead of time.

Diagnosis: I had shoulder pain after exercise that did not get better. After 3-4 months I went to a sports medicine doc. His diagnosis was unclear, so he sent me for an MRI. Monday 9AM, the MRI showed very plainly, a bone tumor in the humerus. An expert in NYC was recommended. Much to my surprise, they took my insurance, and had a cancellation at noon. My MRI drew a crowd of interns. I had a bone scan on Tuesday, which showed only the shoulder as the hot spot. I had a surgical biopsy on Thursday, and was told it was Chondrosarcoma, and we could think before we had to act. Some bone cancers are very aggressive, but I was allowed to go home, and my surgeon was allowed to take his vacation! Regardless of being allowed to wait, my wife and I wanted this removed asap, but also wanted to preserve as much function as possible. The tumor resection was scheduled for a month later.

Treatment: My 8 hours surgery removed the upper 5 inches of my right arm bone, and also the surrounding tissue (clean margins) that might have had chondrosarcoma cells. The bone was replaced with a titanium shoulder prosthesis, with donor bone around that to reattach the shoulder cuff. The intent was to have the titanium for strength, and the allograft to attach the tendons back onto. I also opted for a spica cast, to speed recovery and lower physical therapy. This statue of liberty cast was 8 weeks of frustration, but afterward it was much easier to lower my arm over a couple weeks, than to work in PT to try to be able to raise my arm.

Recovery: I worked with PT for 5 months. I bet I was depressed for 8 months. But by spring 2001, I was coaching little league baseball for the first time, and I was walking on air! About this time, I read Lance Armstong’s first book. Wow, were there a lot of parallels. He had no trouble talking about his emotions, and deep thoughts. And knowing by that time, he had fought back and won the Tour de France was inspiring.

At about 18 months, I felt some problems in the shoulder. It turns out the bone graft was dissolving, and eventually my muscle attachments started to come loose, and my shoulder has gradually lost strength ever since. I can lift my arm using my deltoids, going out to my side, but have no rotator cuff strength. I have learned to compensate with my other arm, and doing things with my elbow at my side.

Since my surgery and subsequent PT, I have had regular chest x-rays to check for lung metastases. And I spent some time investigating my options to improve the shoulder fix. The best shoulder recommendation was a vascularized fibular graft, but the outcome might not be much better than I am now, and I wanted them to leave my leg alone. The chest x-rays started at 3-month intervals, then 6 months, and now as I approach 5 years past, they move to annual checks.

Life Now: This ordeal brought about change. I value the way I live even more. I feel I am always searching for ways to help others, that there was a reason this ordeal ended in a positive way. Still, over time, my life has gradually returned to the same as it was before. I realize at almost five years hence that this tough time has passed, and I mostly want to move on. There was a time I dwelled on not being able to do as much as I had been able to do. But I can attribute parts of that to my triple whammy in 2000. The year 2000 brought a complete job change as part of a promotion, my cancer diagnosis, and my company nearly went under. All three brought about major stress, which is now finally background noise.

Thoughts and Hints for New Patients: It is very important for you to learn as much as you can about your disease, and your treatment options. Please try to find someone to act as your primary advocate, to help you sort through all sorts of things, taking notes at doctor visits, helping work insurance issues, someone to help organize the help with food and home from family and friends.

Diagnosis: I had been complaining about a pain in my arm for about 18 months before it broke when I was playing golf. GPs had suggested a pulled muscle, rheumatic problems an so on but no one had actually touched or felt it.

My arm broke, as I say, when I was playing golf. It appears that the tumour had weakened the bone and it broke just below the site of the tumour. My father took me to our local A & E. It was the Easter vacation so short-staffed and lots of soccer-related injuries in. The pain was referring to my shoulder which when x-rayed revealed nothing.I was given some pain killers and referred for physio. I was in agony. I guess they thought I was overreacting.

Two weeks later, after the physio, I went back for an outpatient appointment and confirmed that I had no pain in my shoulder but that I still had pain in the middle of my arm. This doctor did feel the site and administered a sharp blow to my arm just above the elbow. I screamed out in pain. He sent me for immediate x-ray. I was referred to the consultant who saw me within minutes of the x-rays coming through. He admitted me the following Monday for a biopsy.

He suggested to me what the possibilities were, cyst, benign tumour, malignant tumour. I was revising for my undergraduate finals at the time and he suggested I contact my university and make myself available for surgery immediately. The only available bed was in a gynae ward, which was enlightening! After the biopsy and various body scans I was referred to the Royal Orthopaedic Hospital in Birmingham and put under the care of R.S Sneath.

Treatment: I was prepared for two types of treatment; the preferred option was to take a bone graft from my leg and the second to have a full prosthesis of the humerus with shoulder ball and elbow joint. It was also suggested to me that if the tumour had gone into the soft tissue that amputation would be the only option.

After two more biopsies to determine the size and nature of the tumour it became apparent that the tumour was now growing more rapidly and the prosthetic surgery the only choice. My prosthesis was made by Professor Scales team at Stanmore in Middlesex.

My hospital experience was fine. I was the youngest person on the ward as most were in for hip replacements and the like. I completely lost my self control when the amputation option was pointed out and refused to sign the consent papers. It’s hard when you’re 22! But hey, within a couple of days I realised there really was no other choice, gave my consent and trusted in my surgeon’s ability and integrity.

Recovery: I was discharged within 2 weeks and wore a sling. My father helped me through my physio exercises. He was brilliant and knew how important it was that I was supported. I guess he felt he was able to do something practical too.

I was always left-handed so it could have been so much worse. If I hold a glass in my right hand I could spill it over someone as I have very poor control over the elbow unless I sort of tuck it in.

I cannot raise my arm from the shoulder to put a poster on the wall, say, or wave both hands in the air. Sometimes, even now putting my bra on after swimming, on a still-slightly-damp-body, can be difficult. My scar runs from the top of my shoulder to below my elbow and is quite noticeable.

Life Now: My problem now is that I sometimes get pain, particularly in my elbow. This is because my ‘bushing’ is wearing out. (apparently a sort of plastic component that facilitated movement). This will need to be replaced eventually but I am putting this off for a while because…

I have two young boys aged 5 and 3 who need to have lots of cuddles and kisses from their mommy. I don’t want my bushing replaced until they can at least do their seatbelts themselves/ bathe by themselves. You get the picture.

I teach at a local secondary school, (personal development or sex ed. if you like). I am completing a post-graduate diploma in Psychology at the end of this month (May 2005). I am married, my husband works in London though we live in Cumbria (Lake District UK).

Since my operation I have worked in Spain and Hungary teaching English. I sang in a nightclub in Spain with the Javier Garrialdi Trio. I still play golf (though not as well and not very often). I play the organ at my local church (more style than substance). I used to play keyboards with a reggae band in East Anglia. I am a Magistrate on the Carlisle and District Bench.

I have put out my beehive and am just awaiting some bees… just need some warm weather. I am not house proud, spending time with friends and family, laughing, good conversation, food and so on and some time for myself are more important to me.

Every year I celebrate my successful outcome, last year we even had fireworks (21 you see!). We call it my Special Day and I usually have a card from my mother and treat myself to something that I so obviously deserve! (Champagne, a book, some can’t live without Clarins product for example).

It was definitely worth it. I still have checks every two years. I expect I’ll be back to Birmingham in November. Mr Sneath died earlier this year and the man who was his Registrar when I went through my procedure is now the senior man and one of only 4 in the UK doing this sort of work I believe. So, right place at the right time. I’ve always been lucky like that.

Thoughts and Hints for New Patients: It is very difficult to accept, especially if you are young with your whole life ahead of you. Techniques have improved within the last 20+ years as have detection rates.

Ask questions and consider all your options. Try to make sure that you are referred to the best possible team for you. Afterwards focus on what YOU want from your life, then go for it!

Diagnosis: I was experiencing left shoulder pain and weakness for a few years, so in April 1991 I went to an orthopedic doctor for evaluation. The doctor took an X-ray and stated that it was tendonitis due to weightlifting and he gave me a prescription for Naprosyn. I had been a weightlifter since my teenage years, so this seemed logical to me.

Two years later (April 1993) I was experiencing increasing pain in the same shoulder and I was unable to weight lift. I had tried numerous times over the 2 year period to weight lift, but the pain in my shoulder was so intense that it would take two weeks to go away, and my strength was down 80% in the shoulder. If I picked up anything heavy with the affected arm, the pain would become terrible and I would lose most of my shoulder mobility for a few weeks.

I then decided to go to another orthopedic doctor thinking that I had a torn rotator cuff from weightlifting. I took along my original X-rays and the doctor noticed something on them, and when he took new X-rays, the change was obvious and more of my humerus was affected by the chondrosarcoma compared to the original X-ray.

They did not have a diagnosis at that time, but arranged to do a biopsy (May 5, 1993) which showed chondrosarcoma of the left proximal humerus. I had bone scans, CT scans and an MRI which showed it had not spread. I had to wait 2 weeks after the biopsy before I was given the diagnosis, which was a difficult time. I was told that most likely it was not cancer initially before the biopsy, so the diagnosis shocked my and my family.

I then had surgery the first week of June for the condition.

Treatment: I had a resection of the left proximal humerus, and a titanium rod and an allograft (with rotator cuff) were used to try to keep some function to the extremity. No chemo or radiation was used. Portions of my shoulder muscle, pectorals, and bicep were removed during the surgery.

My arm was in a sling for three months. The hospital experience was not too pleasant, I spent 5 nights in the hospital and experienced severe pain and swelling of my left arm during my stay. After my discharge, the swelling went away within a week. I then had the routine scans, 3 months apart and then twice a year and finally once a year.

Recovery: My arm/shoulder were immobilized in a sling for 3 months, during that time period I did basic stretching and some shoulder strengthening until I began physical therapy.

I began to make excellent progress with the physical therapy, and muscle mass returned to my biceps, triceps, back and the shoulder muscles that remained. Part of this progress was due to my weightlifting background. I was motivated to exercise and defeat the chondrosarcoma. After I completed my physical therapy I continued working out with a weight machine with tremendous strength gains and an increase in muscle mass.

However, approximately 7 months after my surgery I experienced resorption in the area where the donor bone had the rotator cuff, and I lost almost all movement of the shoulder. It was a gradual onset with pain and reduced motion and reduced strength of the shoulder. I experienced occasional periods of swelling in my shoulder and severe pain for about 9 years after the surgery. I still experience pain, but have not had any swelling for the last 4 years.

I was no longer able to use weights, and this was a mentally difficult time. Since I was making such tremendous progress, this was difficult to deal with at first. Before the surgery I had asked the doctor about rejection by my body and was told it was not an issue. I have basically learned to live with the reduced use of my arm, and have learned to work around things get assistance for certain tasks that require full use of both arms.

Life now: My family has been very supportive, and I decided a few years after the surgery that I would not let this ruin my life. I now have a 3 year old daughter, born 9 years after my diagnosis. Initially I was afraid to have any more children (my oldest daughter was 2 at the time of my diagnosis), but I decided I would continue to live.

I have been exercising by doing sit-ups 2 times a week and walking outside when the weather permits. I even started playing the guitar occasionally as therapy for my left arm and forearm and to try to keep some strength in the area.

Thoughts and hints for new patients: For a patient just diagnosed, I would recommend initially getting a second opinion before any surgery and let the facts and your judgment guide you to the doctor you feel most comfortable with.

A positive attitude is best, and I went through many dark days initially, but I can see that now that the best times were when I was upbeat, so I would try to stay as focused and positive as possible and discuss this with other people who have gone through the same thing if possible.

I did not have the opportunity to talk with anyone in a similar situation and I wish I would have been able to do that. People who have not experienced chondrosarcoma may not realize what you are going through. Strong faith and support from others is essential to a successful recovery.