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sarcomasupport.com |
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2005
2004
Information about second Cancer Awareness Fund Raising Event on August 28, 2004
Information about the Third Sarcoma Awareness Event on June 11, 2005
My cancer story:
I detected a less than 1 centimeter firm nontender 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, 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 fasciiitis (a benign diagnosis). My tissue slides were sent off to Boston for another 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 Armed Forces Institute of Pathology (AFIP) confirmed diagnosis 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 millimeters 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. My oncologist referred me to a wound clinic 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. I'll keep you posted.
Update on my story from 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 result 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 required the need to wear a brace to elevated the foot for the rest of my life. I spoke with my wound clinic physician and asked for another option. He offered to use synthetic skin (http://www.alpigraf.com) to cover the exposed wound. I had the procedure on 12/23/2004. He did a minor debridement of the wound then applied the apligraf. I was kept on crutches for 3 months and wore a cam walker for 4 months.
The wound has been slowing closing from all directions for 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 build up the muscles in my lower leg that became atrophied from lack of use.
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. I encourage others survivors to do the same thing in their communities. Together we can make a difference.
Update of my story from 8/2006 I feel fine and the leg has healed up nicely. The little bit of restricted motion at the ankle does not prevent me from being active. I am not supposed to run anymore because the leg bone was weakened from radiation therapy. I run a little, walk and bike a lot. Other cancer survivors have told me they like the look of my healed leg (with the apligraf) better than their own leg with a skin graft from their own tissues
Check out my sarcoma web page for information about my awareness events http://www.sarcomasupport.com. You can also contact me from my web page if you have questions or comments. My wife's name is Paula and she is a Cancer Research Nurse. Is you call and you don't reach me she may be able to help you. Look forward to hearing back from you. Let me know if you want me to send a picture of what my leg looks like now.
nesbitt.richard@marshfieldclinic.org (w) 715-384-3489 or 3647 (h) 800-847-0016 ext 73390 or 73223 (w) or 715-847-3223 or 3390
Mass found 1//25/2004, excised 2//25/2004, Diagnosed MFH 3/2004 Radiation therapy 5-7/2004 Apligraf placement 12/23/2004, No evidence of disease (NED) 3/2005, 3/2006. 8/2006 Next MRI of leg will be on 11/02/2006; next CT scan will be on 3/2007
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"I decided to organized the event as a relay. I had 23 people join me for the walk and 5 support people. I walked
intermittently (started, middle, and finished), and the other people filled in the gaps. Someone was on the route at
all times. It took the relay team 16.5 hours to complete the walk. We raised $350 for the group and had a lot of publicity. 
