If you or a loved one is diagnosed with any form of cancer, it can be a terrifying thought. Fortunately, not all cancers are terminal. Cancers need to be caught before they spread and while they are still superficial. When caught early outcomes are very positive.
In 2014 my husband developed a lump on his upper right arm. Our dermatologist did a biopsy. The pathology report came back calling it a lipoma. These are quite common and rarely become problematic. However, by the end of 2015 a few more bumps evolved in the same area and almost seemed like it became a part of the first lump. The outer area was bright pink as well. This would indicate inflammation. We became very concerned. We asked our general doctor if she would order an ultrasound. This showed nothing and therefore it was still called a lipoma. Not convinced my husband asked for the name of a general surgeon. My husband then made an appointment and had a consultation in January. This surgeon ordered an MRI! Still nothing was seen as out of the ordinary and still called a lipoma. My husband didn’t think this was an ordinary lipoma and asked the surgeon to remove it! There never was any pain, it just looked very odd.
Surgery to remove it was on February 2nd. The pathology report came back in a week. The surgeon called to tell us that this was not a lipoma but it was a soft-tissue sarcoma cancer! The surgeon sent my husband for a full body PET scan. No other cancers were seen in his body and only in the local area around the surgical removal of the initial site. This amazing surgeon called the local oncologists in a large medical clinic to see if they could remove the borders and provide further treatment if needed. The oncologist told our surgeon to have my husband go to the UCLA Medical Center in Los Angeles, CA. Dr. Eilber was highly recommended as being a specialist in sarcomas! And indeed he is! Brilliant. We saw Dr. Eilber on February 23rd. This doctor came to the waiting room to greet us. We turned over a lot of records that we were instructed to bring. Dr. Eilber then handed my husband two prescriptions. One for a heavy duty pain pill (to be used after the second surgery) and an antibiotic. He also had blood work done.
We then met with Dr. Eilber. He showed us the images on the PET scan disk. Dr. Eilber explained that this sarcoma didn’t spread and was superficial. There are over 60 types of soft tissue sarcomas and over 20 types of bony sarcomas. They are a rare type of cancer. A specialist is needed to treat it! He told us that he believes this type of cancer was a DFSP. The full term is Dermatofibrosarcoma Protuberans. It develops in the deep layers of skin. If let go (over time) it can develop tentacles that can grow into surrounding fat, muscle and even bone. DFSP is most commonly found on the torso, but can also be seen on the arms (like in my husband’s case), legs, head, neck, fat, bone, fibrous tissue, blood vessels and other connective tissues and can originate from almost anywhere in the human body. It only spreads to other parts of the body in about 5% of all cases. DSFP typically grows very slowly (over months to years) and can become a raised nodule. Which is what appeared on my husband’s upper right arm. This is one reason it is so critical to catch this type of cancer as soon as possible. And we did.
This is not an age related disease. DSFP tends to affect people between the ages of 20 and 50. But it has been diagnosed in people of all ages. There are about 1,000 cases diagnosed in the United States each year. With an incidence of about 1-5 people per million. Women between the ages of 30 and 50 and African-Americans are at a higher risk of developing the disease. Pregnant women who have DFSP may have faster growing tumors. DFSP is not believed to be a hereditary condition. Most people who get soft tissue sarcoma have no known risk factors. Sometimes if people have been exposed to radiation or chemicals, or have inherited illnesses that increase their risk don’t always develop soft tissue sarcomas.
Because this is a such a rare cancer and symptoms are not always present, diagnosis may be delayed. DFSP is often mistaken for other skin conditions, particularly in its early stages. The ultrasound and MRI tend to go deeper, not superficial. While my husband’s situation wasn’t seen on ultrasound and an MRI is that these tools go deeper then conditions that are superficial. Which is what my husband had, a superficial DSFP. By the time this grows deeper it may have reached muscle or bone, even spreading to other parts of the body in rare instances.
Dr. Eilber performed the surgery to remove the margins on February 23rd. The final pathology report showed that the margins were clear and his prognosis is excellent. In the past, recurrence rates were high, but with the introduction of specialized surgical techniques those rates have decreased. Even with recurrent DFSP, Mohs surgery has a 98% cure rate. Mohs surgery involves removing one layer of skin at a time. Each layer that is removed is then placed under a microscope in order to look for cancer cells. The process continues until cancer cells are no longer found. Mohs surgery reduces the risk that the DSFP will return. We are confident that my husband’s longevity is excellent. We see our dermatologist yearly for checkups.
In general, cancer occurs when cells develop errors (mutations) in their DNA. Our bodies are made up of trillions of normal, healthy cells. Cancer starts when something changes a normal cell into a cancer cell. The errors make cells grow and divide out of control. The accumulating abnormal cells form a tumor that can grow to invade nearby structures and spread to other parts of the body.
The type of cell that develops the genetic mutation determines what type of cancer develops.
My husband has had no pain whatsoever throughout this whole experience. Because my husband’s sarcoma was caught early, it didn’t spread and was superficial no radiation or chemotherapy is needed. The drain is out and the stitches will be removed in two weeks.
Mayo Clinic: Disease and Conditions – Soft Tissue Sarcoma. http://www.mayoclinic.org/diseases-coditions/soft-tissue-sarcoma/basics/definition.
UCLA Health – Conditions and Treatments – https://www.uclahealth.org/sarcoma/pages/conditions-treatments.aspx
http://sarcomahelp.org/dermatofibrosarcoma-protuberans.html. What is Dermatofibrosarcoma Protuberans?
American Cancer Society. Radiation Therapy – What It Is, How It Helps. http://www.cancer.org/treatment/treatmentsandsideeffects.