A Serious Reality

We’re all familiar with chronic conditions – diabetes, arthritis, cancer…wait. Cancer? A chronic condition? Yes. A cancer diagnosis does not have to be a death sentence; for the large majority of people diagnosed with cancer, it is simply a diagnosis of a chronic disease with which they live, day after day, year after year. They are living with it, not dying from it. Lindsay, a 23-year-old young woman, knows this well.

Her Diagnosis

Diagnosed with cancer when she was 19 through a bladder ultrasound for something unrelated, Lindsay had never heard of Alveolar Soft-Part Sarcoma, or ASPS, when she was diagnosed with the disease. ASPS is a sarcoma that arises in soft tissues in the body. Sarcomas make up just one percent of all cancers and 15 percent of childhood cancers. ASPS usually involves muscles and deep soft tissues of the pelvis or extremities and is slow growing, typically making them very advanced at the time of diagnosis.

The reaction

Having had no symptoms at the time of diagnosis, Lindsay was devastated and fell into a mixture of anxiety and depression, but thanks to her family's support she eventually decided to fight the disease. She had pre-operative radiation, interoperative radiation and surgery, and is currently on her second targeted therapy that she can take at home in pill form, but she is not in remission; rather, her tumors are stable, there has been no growth and there are no new metastases. This is wonderful.

Getting involved

There are struggles. Lindsay says she has felt like giving up many times, but getting involved in cancer advocacy and young adult groups has given her strength and support, as does raising money for the cancer treatment center she goes to, practicing yoga and spending time with her cat.

Sarcoma and ASPS are not well-known, so yellow ribbons and national awareness months are not common-place, and funding for these cancers is not as large as it is for other types of cancers, which is frustrating. Through social networking, such as facebook, Lindsay has found a supportive sarcoma and cancer community to lean on and be a part of.

Living with asps

Living with cancer is not easy; fear is a constant in her life. Every headache or bodily pain sparks fear that the cancer has spread. The chronic nerve pain she deals with from surgery literally brings her to her knees in pain and the side effects from medication interfere with the active life she leads as a student and young woman. Watching friends get married or have babies are painful reminders that she does not know if she will ever experience these things.

Life is not depressing for Lindsay though; she lives life as fully as possible and enjoys every minute, although cancer never quite leaves her mind entirely. According to Lindsay, living with cancer does not mean you are dying slowly. She says if you have a pulse, goals, love in your heart and a plan, you are still very much alive. As her father said ten minutes after her diagnosis, "This is where the fight begins."

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Comments

Comments on "Real life: I have chronic cancer"

Lindsay March 18, 2011 | 2:17 PM

Hi Dotty! You are so right. Sarcoma's are underfunded when it comes to research as it is! I have not yet done a clinical trial, just taking drugs off label. I wish your daughter all the best, as I know how extremely challenging living life with this disease is!

Dotty W March 03, 2011 | 7:03 AM

My daughter also has ASPS and is currently in a clinical trial at NIH(the Natl Institutes of Health). With rare cancers it's really a good idea to seek out clinical trials. After the initial diagnosis, surgeries, complications of surgery, and then the blessing of being accepted into a tral we have started to face this as a chronic disease. Thank God for all of the researchers that are committed to finding new treatments.

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