I never had any pain or discomfort. One morning as I was taking a shower I felt a knot on my back.  I immediately called my family doctor and he suggested I have a CAT scan. That afternoon, I was told that there was a tumor on my 9th rib. At first the doctors here thought it was benign after needle biopsies. Then, during an aborted surgery, the surgeon knew it was something much different, took a larger biopsy, sent it to Mayo, and closed me back up.

Mayo returned the verdict, osteosarcoma, and within two weeks I was on my way to M. D. Anderson Cancer Center in Houston, Texas, where Dr. Wayne L. Hofstetter, a wonderful thoracic surgeon, removed the tumor and two ribs (8th and 9th) on the left side of my body. Dr. Raymond, a pathologist at M. D. Anderson upon receiving Mayo’s diagnosis, questioned if the tumor might not be a periosteal osteosarcoma as a result of the grade. He was correct. Once removed it was determined that it was periosteal osteosarcoma and it had invaded the bone marrow for 7mm.

As a result of the bone marrow invasion I took a tough regiment of chemo at M. D. Anderson Cancer Center during 2005. While Houston did not have any bad weather from Hurrican Katrina, I was evacuated during Hurrican Rita.

Since my diagnosis, the osteosarcoma has returned twice, once as a lesion on the back of scalp (removed in April of 2006) and once in the middle lobe of my right lung (removed in May of 2008). I have returned to M. D. Anderson every three months since 2005. My sarcoma doctor is Dr. Shreyaskumar Patel. In February of 2009, he agreed to allow my local oncologist, Dr. Christopher Croot, to order scans here in Mississippi every other three months. This saves me both time and money as I will only be going to Houston every six months. I have been blessed, as my scans since May of 2008 have been clear.

Up until all of this has happened to me, I had never had any type of major surgery. I have been blessed with rather speedy recoveries from my surgeries. I have never had any major pain but I don’t think that I was mentally or physically prepared for the chemo regiment that I had in 2005…no pain but tired and sick at my stomach all the time.

Through all of this, my Christian faith and the support and care of family and friends have carried me thus far in my struggle with periosteal osteosarcoma.

Periosteal Osteosarcoma at the Rib
Date of Diagnosis: April 2005
Age at diagnosis: 47
Location: Mississippi, United States
Hospital: M. D. Anderson Cancer Center, Houston, Texas

Diagnosis: During 1993 I bought a small trampoline for use at home. I’d read it was good exercise and was keen to keep fit. I started to use it daily and almost immediately I experienced an excruciating pain in my left leg. It was like a bee sting that lasted ages, so severe that it made me stop in my tracks and gasp. Once the pain had been triggered it didn’t go away – I intermittently felt it. I was no longer able to use the trampoline so packed it away and made an appointment to see my Doctor. He suggested I’d pulled a muscle on the trampoline – even though I knew it wasn’t that kind of pain. The pain continued and became more intense and more regular so that I was walking with a limp and could not walk any distance. It felt like a rat was gnawing the bone of my leg all the time. During this time (over two years) the Doctor kept fobbing me off and not taking my pain seriously. Then one day in complete despair I went to his surgery and refused to leave until he sent me for an x-ray. The x-ray showed a mass inside the bone of my Tibia. I then was sent from one specialist to another each misdiagnosing the mass. I had scans, MRI, more x-rays. Eventually having painfully tramped all over England seeing these specialists I was referred to Mr Steven Cannon (privately) in London. He recognised the mass for what it was immediately and said I needed urgent surgery.I had been feeling depressed about the pain and felt helpless despair but once it was diagnosed and was to be treated the depression lifted.

Treatment: Within a few days I was in hospital undergoing surgery. The tumour was Chondrosarcoma grade 1 and it was surgically removed in December 1995. The leg was not strengthened at the time as it was not thought it was necessary and it was also thought that bone cement might disguise a recurrence. I was in plaster for eight weeks.

Recovery: I was surprised at how wasted my leg was when the plaster was removed. Also the tumour had been near the ankle joint and as a result the ankle joint lost a lot of its flexability initially. After the inital healing process I had several months of physiotherapy which improved flexibility of the ankle joint.

Further Treatment: Over the first five years I had regular follow up x-rays, sometimes scans or MRI. I found towards the end of the five years that I was getting what I was later informed was “stress pain” – because the bone had ben weakened by surgery and the cavity left from where the tumour had been situated had not filled back in. So in 2001 I had further surgery – curetage and biopsy and bone cement was used this time to fill the cavity. Again I was on crutches initially and had phisiotherapy after the healing time. I continue to have follow ups but am currently free of recurrence 10 years later.

Life Now: My life is completely normal although I do have residual problems – nothing I can’t handle though! If I do any serious walking my leg aches afterwards (very uncomfortable) the ankle joint swells on that leg if I fly, in hot weather or if I exercise a lot. I tend to wear a support stocking on it and raise it when I sit down if its bad! I still wear stilletto heel shoes though when I’m going out!!

Thoughts and Hints for New Patients: Don’t panic! Being diagnosed is good because then you can start to figure out how to treat your condition. It was being in pain without being diagnosed that I found awful and depressing – there were days when I thought I would never walk properly again and nights when I woke in a muck sweat thinking I was going to die.

I believe knowledge is empowering so I recommend you find out as much as you can about your condition so that you can make informed choices. Make sure you’ve got plenty of support (maybe join a support group because they tend to have lots of information and expertise you can draw on.)Don’t just rely on your family and close friends because it can be hard for them too. And finally remember that: COURAGE IS NOT THE LACK OF FEAR – IT IS THE MOVING FORWARD IN SPITE OF IT. Take care.

He scanned, x-rayed, scoped…you name it, he did it.  On the very last day, he opted to run a bone scan to see if he could pinpoint the reason for my now phantom (as in gone) pain.  During the bone scan, my tumor was found.  Of course the x-ray tech couldn’t tell me that; she simply told me to get it checked as it wasn’t normal.  As a side note…no cause was ever found for the original kidney pain.

Off to the ortho (Dr. Robert Fain) I go…after all, I thought I had a knee problem.  He says, “You have to go to M.D. Anderson.”  I’m in utter disbelief!  For what?  I thought this was just arthritis.

Dr. Fain paves the way for me to get in to M.D. Anderson, where my case is picked up by the Chief of the Sarcoma Clinic, Dr. Robert Benjamin. I’ve come to truly love this man.  More tests.  Everyone who is on the web page knows about the tests.  I’m going to glow & poop in technicolor for the rest of my life!  The bone biopsy is not specific.  They can only tell that it’s a spindle cell sarcoma, not the specific “make & model”.

Treatment: Chemo is begun on 6/30/2000, and my hair is gone three weeks later.  Many rounds of chemo ensue until, in September 20o0, I am scheduled for surgery.

Dr. Kristi Weber is a great doctor, an excellent surgeon & the best cheerleader there is!  She performs an allograph on my right femur.  So now I have a little over 5 inches of someone else’s femur bone in my body.  I’m now to be completely non-weight bearing until the two bone grafts heal.  This ends up being 13 months…bear in mind that I’m an overweight 45 year old woman by this point.

In November 2000, during my monthly appt. Dr. Benjamin comes into my exam room and smiles at me.  For the first time since I’ve been his patient, he is smiling.  I start to cry.  Maybe I’m going to live through this after all. He tells me my tumor is MFH (I’ve have lots of words that fit those initials – can’t put any of them here tho!).  I’m told this type of cancer in the bone in someone my age is very rare.  Woo-hoo, lucky me!  He tells me there will be more chemo, inpatient & outpatient.  And that 2001 will probably suck, but 2002 will be great!  2002!!! Up till this point, no thoughts had strayed that far ahead.

The new, tougher chemo regimen starts and he’s right, it still sucks…until, in April 2001, my bone marrow dictates that there is to be no more chemo.  The other thing that has been dictated is that I have to have another surgery.  The original one has not healed.  This time, my fibula is transplanted to my femur.  The original metal brace is removed & a longer one is put in…along with 13 screws…on an Xray, I look bionic. But I still have my leg.  Since there is no chemo to interfere, the leg finally heals. My gift for my 45th birthday is that I’m allowed to walk on both legs!

Life Now: My other, ongoing gift is that I am here.  I am writing my story.  This month – April 2009 – is my 8th anniversary off chemo.  I’ve had no recurrences. I have come to believe in Guardian Angels (remember that phantom pain?) and the people at M.D. Anderson.  Dr. Weber has moved on to Johns Hopkins and I truly miss seeing her.  There’s just something about the people who save your life that you never get over.

Malignant Fibrous Histiocytoma at the distal femur
Date of Diagnosis: June 2000
Age at diagnosis: 44
Location: Houston, Texas – USA
Surgeon: Kristi Weber
Oncologist: Robert Benjamin

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: I hurt my shoulder in the spring of 2006 playing basketball with my daughter. I went to the orthopedic surgeon, as I figured it was either a shoulder separation or rotator cuff problem. The doctor took x-rays, and said he thought it was shoulder instability, or weakened muscles from years of overuse playing baseball and volleyball. He prescribed several weeks of physical therapy that seemed to help for the rest of that year. I mentioned this to my family physician during my annual physical, and said that as long as I could handle the pain, that surgery should be avoided. He knew from personal experience that shoulder surgery was difficult and the rehabilitation was quite painful.

By the spring of 2009, my pain was increasing, and again I asked my family physician during my annual physical about when you decide it was time to take the plunge and have surgery. He asked me if the pain kept me awake at night, to which I replied, “Yes.” He told me then that it was time to do something. After my physical, I arranged to see the same orthopedic surgeon from two years earlier…figured I needed rotator cuff surgery.

X-rays showed bone growth on my scapula that wasn’t on the x-rays from two years prior, which indicated a previous fracture, so they wanted to do an MRI to see both, the bone growth and my rotator cuff. After the MRI, they said they wanted to refer me to an orthopedic oncologist (I didn’t know there was such a thing) to do a bone biopsy on the bone growth to be safe. It was diagnosed as a level 1 Chondrosarcoma approximately 7 X 7 X 5.2 cm tumor on my scapula.

Treatment: I was provided with two options. One was called the Tikhoff-Linberg procedure, where they remove my scapula and shoulder joint, and tie all the muscles back into my clavicle. The other option was a complete shoulder replacement with a titanium prosthesis. On August 15th, 2008, I had the complete shoulder replacement.

Recovery: I was placed in an immobilizing sling for 4 weeks, and then released to do physical therapy on my own, being that I had done physical therapy two years prior.

Life Now: Currently, at 6 months post-op, I have relatively good use of my arm. As long as it is below my chest and near my body, I can lift approximately 50-75 lbs. I will never have motion above my head, but can handle all of my everyday needs from my chest down. I have hopes of attempting to play golf within the next couple of weeks. I have tried to stay positive and keep attempting new things everyday.