keepsmiling75's Journey with Synovial Sarcoma, Adult Soft Tissue C...

Patient: Sarcoma - Adult Soft Tissue Cancer > Synovial Sarcoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 4 years ago, Female, Age: 42, Stage II

  1. 1
    over 4 years ago
    keepsmiling75's Avatar

    Misdiagnosed

    Oh No

    I've been a runner for many years and was experiencing some knee/IT Band pain while training for a marathon in 2010. My trainers gave me ITB exercises and it seemed to get a little better. I completed the marathon, but the pain was still there. I stopped running for a few months, but when I started to run again the pain returned. I went to an orthopedic surgeon in early 2011 who said I had a torn IT Band. He referred me to PT for a few weeks. It did not improve, so I asked for an MRI. He had also given me a shot to see if it was a nerve problem. The MRI showed something small, they said it was just a tear from over use. I went back to the PT. No improvement. I had weekly ultrasound treatment from the PT. I went back to a different orthopedic surgeon and he gave me a cortisone shot. No improvement. More PT. Two more doctors, same opinion--PT. I haven't run in a year and had pain just walking now. Finally in early 2012 I got another MRI done and a different doctor suspected it was a ganglion cyst. I had it removed and sent to pathology to make sure it wasn't anything bad. It was bad. :* ( Synovial Sarcoma.

    0 Comments
  2. 2
    over 4 years ago
    keepsmiling75's Avatar

    Surgery

    Procedure or Surgery

    I had surgery to clear the margins around the tumor. They removed a large section of my thigh including muscle, fat and skin. They used muscle, fat and skin from my other thigh to close up the leg. It's called a skin flap surgery. The surgery was 10 hours, 2 different teams of doctors. I had to stay in the hospital for a week. I could not walk for 4 weeks and had to keep both of my legs parallel at all times. I liked calling myself Ariel (the little mermaid). ; ) The pathology showed clear margins and no evidence of any cancer.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  3. 3
    over 4 years ago
    keepsmiling75's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Although all my MRI & CT scans were clear, the tumor board of my doctors recommended that I have chemotherapy since my tumor was given several shots during the misdiagnosis phase. I will be completing 5 rounds of Adriamycin & Ifosfamide (and Mesna). These treatments are to be completed in the hospital for 5 days each round, with 2 to 3 weeks in between each round. I have just completed my 4th round. I lost all of my hair about a week after my first round. The first round was pretty rough--very very sick. But rounds 2 through 4 have not been as bad. My doctor gave me different nausea medicines.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  4. 4
    about 4 years ago
    keepsmiling75's Avatar

    Finished treatment

    Celebration

    Finished chemo treatment in early December. : )

    0 Comments
  5. 5
    about 4 years ago
    keepsmiling75's Avatar

    Remission

    Celebration

    Had a PET scan last week and the results show no evidence of cancer. The spot that was on my lung a few months ago has disappeared. Yahooooo!

    0 Comments
  6. 6
    over 4 years ago
    keepsmiling75's Avatar

    Spot on lung

    Oh No

    Synovial Sarcoma is known to metastasize to the lungs. I had a CT scan on my lungs and it showed new small spot. My oncologist wanted to biopsy it, but the surgeon said it was too tiny to biopsy at this point. It could be cancer or it could be a fungal infection. Now we are going to wait another month to see if it grows. Next step is a Pet Scan.

    0 Comments