Hollie2008's Journey with Dermatofibrosarcoma Protuberans (Sarc...

Survivor: Sarcoma - Adult Soft Tissue Cancer > Dermatofibrosarcoma Protuberans (Sarcoma)

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 9 years ago, Female, Age: 58

  1. 1
    • Hollie2008
    • Experience with Dermatofibrosarcoma...
    about 5 years ago
    Hollie2008's Avatar

    Diagnosed

    Oh No

    I had a spot on my back near the spine which I had asked 2 physicians about and they both told me it was a cyst and not to worry about it. I had this spot for a few years and it began itching so I asked it they could just remove it as it didn't itch initially and I was worried about it. So, I scheduled an appointment and they removed it in the office..... at least part of it. In a few days the doctor called me and told me that the pathologist called him and said I had dermatofibrosarcoma protuberans - CANCER. The doctor said he didn't know a lot about this type of cancer as it is a rare type, but I needed to have a wide excision since there were no clear margins on what he took out. This was my "OH NO" moment. I wanted to have this surgery done as soon as possible.

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  2. 2
    • Hollie2008
    • Experience with Dermatofibrosarcoma...
    about 5 years ago
    Hollie2008's Avatar

    Surgery

    Procedure or Surgery

    The first step I had to undergo was a surgical procedure called a "wide-excision". I had this done in October 2008. The surgery went well. I had a drain in my back for about a week. The incision was about 8 inches long, which was much larger than I had expected. As I started to heal I had a great deal of neuropathy (nerve) pain in my back. Some days it was so intense I was nearly in tears. The doctor told me this may improve in time, but it was from the nerves being cut during the procedure. Nerves grow back at a very slow rate and it could take months or even years before it was better. Some days it was hard to get comfortable. After dealing with this for many months I was put on gabapentin and that medication helped tremendously. I saw the oncologist and he recommended having radiation after the incision was healed.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Hollie2008
    • Experience with Dermatofibrosarcoma...
    about 5 years ago
    Hollie2008's Avatar

    External radiation

    Radiation

    Once my incision from the surgery healed I underwent 6 weeks of radiation going 5 days a week. I underwent a CT scan and the markings so they knew exactly what area to radiate. They placed a small tatoo as well as some tape on my back that needed to stay in place for a while. The radiation itself was painless and only took a very brief time to do. Getting positioned properly took longer than the actual radiation procedure. My problem came just after completing the radiation. Toward the last few treatments my back began to feel like it was burning. My back became very red and almost beefy looking. A few days after completing the treatment my skin began oozing and it soon had a greenish drainage. I had an infection and second degree burn. I had to have it debrided a few times which was painful. This was done in the doctor's office. I had to put silvadene cream on my back every day which did a wonderful job in healing my back. However, I have had a brown discoloration around the area that was radiated for 3 years. This brown discoloration has nearly faded (finally) leaving just a light shadow around the scar area. I have many vascular or small blood vessels just under the surface of the skin around the incision site at well. These areas are very ugly to look at. I am hoping they will fade over time, but they are still pretty prominant at this point.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • Hollie2008
    • Experience with Dermatofibrosarcoma...
    about 5 years ago
    Hollie2008's Avatar

    Birthday

    Celebration

    I just had a birthday a week ago. In October it will be 4 years since I learned I had cancer. I saw the oncologist a few weeks ago and he told me things are going well. My lab work looks great. I have been having CT and MRI's every 6 months and now he said I don't have to have another one for a year! I am very happy about that. I will see him again in 6 months and then next July or August I will have another CT and MRI. October of next year will be my 5 year mark. I am feeling better. I have gotten off the gabapentin I had been on for the nerve pain in my back and I am doing great without it. The scar is there as a reminder of this journey I have been on. It helps me to remember not to take anything for granted. Cherish each day. Let others know you love them. Live life to the fullest.

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