The St. Jude Life Study: Long-term Cancer Survivors Are Being Invited Back for Examination into Chronic Health Problems

One of the issues a St. Jude hospital alumnus faces after dismissal is where to go for medical treatment. Many of us are unable to find treatment for lingering effects from the chemotherapy and radiation treatments used to save our lives. A lot of us go bankrupt in the process of treating issues that arise following the cancer. Though insurance companies cannot withhold insurance from us once we reach ten years in remission from the cancer, often other issues are preexistent and companies can withhold coverage of medical procedures for that reason. Loopholes create a lot of agony for adult childhood cancer survivors. Many survivors fail to receive adequate follow-up care because of being unable to afford the cost.

St. Jude Hospital is currently conducting a study into the lives of their long-term survivors. The study is termed St. Jude Life. Within the next two years, all remaining St. Jude alumni patients will be invited back to the hospital for a physical exam and functional assessment. I should define what an alumnus or alumni status means. A person who has reached this status has been free from the cancer diagnosis that brought them to the hospital for a minimum of ten years.

Life as a cancer patient is not over once therapy is complete. For ten years, someone who has been diagnosed with cancer is followed on a regular basis to be certain the cancer does not return. It is often believed that five years in remission means the person is cured. Though many times this is the case, this author and several of her friends have experienced differently. Secondary cancer diagnoses are too common among those treated for cancer as children. Chemotherapy and radiation have varying effects depending on what type of chemotherapy was used and where radiation was directed. One of the things the functional assessment the St. Jude Life study will do is measure effects cancer treatment had on cognitive abilities such as memory and physical abilities such as heart function.

If a patient is found to have functional problems with memory, he or she will be told of the problem and experts will help the person to find ways to cope with the memory loss. I am one person who does have some short-term memory loss. My chemotherapy drugs are known to specifically affect the kidney (of which I have one rather than two), the lungs, the hearing (at last check seven years ago, I was partially deaf in one ear), and likely other organs to which I am unaware.

Life as a St. Jude alumnus is an exciting albeit scary one. Research is finding adult childhood cancer survivors tend to have heart attacks earlier than the general population. This finding makes sense regarding the fact that chemotherapy drugs are toxins that kill good cells along with the bad. Because the first substantial number of childhood cancer survivors were treated in the 1960's, the long-term study of our lives once we leave St. Jude hospital is a new one. In the years between my leaving the hospital and the creation of the St. Jude Life study, I often wondered if the focus for children going through treatment was truly on the quality of life they would receive when they survived. It seemed the focus was on rising numbers of five year survival rates. The St. Jude Life study is a step in the right direction for not simply increasing survival rates but for identifying commonalities among those treated with the same chemotherapy drugs. Identifying what is common among the long-term survivors will allow the ACT (after completion of therapy) clinic to be able to tell patients who are 5-10 years removed from cancer treatment what to expect in the years to come. This identification of problems may also allow doctors to focus treatment in a different way to provide a better quality of life for future childhood cancer survivors. This is one study of which I am proud to be a pioneer guinea pig.

The St. Jude Life Study
www.stjude.org/stjude/v/index.jsp
Statistics on problems with long-term survivors
http://www.mskcc.org/mskcc/html/71319.cfm