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When I discovered there was no face-to-face sarcoma support group in my area of Wisconsin, I started one. You can read about it by clicking the link above. We would be happy to have you attend our meetings, even if you are not from Wisconsin! I want to help other sarcoma patients, and this was one way that I could. I encourage other survivors to do the same thing in their communities.
I detected a less than 1 cm firm, non-tender, superficial mass in the lower right leg; 6 inches above the ankle and adjacent to the shin bone (tibia) in January 2004. Plain xray was negative. MRI showed an enhancing superficial lesion and no abnormality in the bone. A tiny incisional biopsy was performed late Feb 2004. A frozen section was suggestive of cancer, so a wide-base excision was made and the wound was covered with a split thickness skin graft from the right upper leg.
The tumor appeared to involve the fascial layer. Pathologists could not agree on the diagnosis. One felt I had sarcoma and two felt I might have nodular fasciitis (a benign diagnosis). My tissue slides were sent off to Boston for a second opinion. I was diagnosed with low grade Sarcoma - Malignant Fibrous Histiocytoma (MFH), spindle cell, not otherwise classified per Dr Chris Fletcher of Brigham and Women's Hospital in March 2004. The diagnosis was confirmed by Armed Forces Institute of Pathology (AFIP) in April 2004. If I read their report correctly their pathologist suggested that I had low to intermediate grade MFH.
Because the tumor was 2 mm from the bone (tibia) (and one centimeter is preferred); it was recommended that I receive radiation therapy. I consulted 5 oncologists about the radiation therapy and they all agreed that I should receive it. I received radiation therapy between May and July (including bolus and boost regiments). Radiation therapy was started before the skin graft had fully healed. I was told the graft would react to the radiation therapy but would eventually heal. At one point the therapy was stopped for a week as the graft site was blackened from the effects of radiation. When radiation therapy was resumed, the bolus was removed from the leg so the dose wasn't intensified any longer.
The radiation therapy ultimately killed the skin graft and it delayed the healing of the wound. I was referred to a wound clinic by my oncologist in October. The wound clinic doctor agreed that I needed help to get the wound to heal. He stated I had 3 problems: the graft had failed and needed to be debrided, I had a wound infection, and I had radiation dermatitis. Debridement was performed on 10/27. Cultures confirmed an infection with (2) gram negative organisms. I was placed on Levaquin for 15 days, Vancomycin soaked gauze (wet to dry) dressings in the morning and Acetic Acid soaked gauze (wet to dry) dressings in the evening to treat the infection, Triamcinolone topical cream around the leg to treat radiation dermatitis. I learned on 11/02/04 that the biopsies taken on 10/27 were negative for residual cancer and deep infection.
The radiation dermatitis resolved within a week with the Triamcinolone. The infection is now gone and I am waiting for the wound to heal from the bottom up. I continue to do wet to dry dressing changes twice a day with Vancomycin soaked gauze. The open wound measures about 2 x 3 inches, tendon and muscles of the lower leg are exposed.
Because the tendon is exposed the surgeon will not let me move the ankle. I've been on crutches since 10/27, wearing a cam walker, and can only do heel touch weight bearing. The doctor feels the moving of the ankle will create "shearing forces that may inhibit wound healing". The wound has gotten 6-10 millimeters smaller in size since 10/27. I saw my orthopedic oncologist on 11/24 and referred me to a Plastic Surgeon to discuss other healing options -- using a vac device verses performing another skin graft. My 'vital statistics' are Sarcoma - malignant fibrous histiocytoma (MFH), diagnosed 3/2004, external radiation therapy ( XRT) on 5/7/2004, no evidence of disease ( NED) 3/2005.
Update on my story in June 2005
I was offered a second skin graft procedure in December. The plastic surgeon was going to debride the wound down to a deeper level where the tissues had a good blood supply and then apply a new graft. After thinking about the consequences of the procedure, I declined the surgery as it would have resulted in sacrificing the tendons that allow you to flex the foot upward at the ankle. It would also have resulted in a foot drop deformity and require me to wear a brace to elevate the foot for the rest of my life.
I spoke with the wound clinic doctor and asked for another option. He offered to use synthetic skin, called ®Apligraf, to cover the exposed wound. I accepted and had the procedure on 12/23/2004. He needed to do another minor debridement of the wound before he could apply the apligraf. I was kept on crutches for 3 months and wore a cam walker for 4 months after surgery. I had to keep the ankle from moving because the surgeon felt movement of the ankle produced shearing forces that inhibit the healing of the wound.
The wound has been slowly closing in all directions for the past 6 months. It is now about the size of your thumbnail. New granulation tissue has developed over the tendon and new skin is slowly growing across the granulation tissue. All of my restrictions for activity were lifted in mid May. I am working hard to regain the lost range of motion in my ankle and to build up the muscles in my lower leg as they were atrophied from lack of use over 5 months.
I was fit enough to organize and participate in my 3rd Walk for Sarcoma Event on 6/11/05. We did it as another relay event to raise funds for sarcoma research. I was able to walk for 15 miles and biked next to the other walkers for 30 miles without difficulty. The relay team took 12 hours and 45 minutes to cover the 45 miles distance from Marshfield to Wausau, Wisconsin. The first Walk for Sarcoma Event took place in May 2004 and was done as a solo event. I walked 33 miles on a cold rainy day to raise awareness for sarcoma. The second Walk for Sarcoma Event was organized as a relay because I wasn't permitted to walk more than 15 miles. The event took place in August 2004. It took the relay team 15.5 hours to cover the 45 miles. I received a lot of publicity from all three events and support from the local businesses.
Together we can make a difference to raise awareness and funds for research!