Cancer Survivorship: Pathways to Health After Treatment:
Survivor-Researcher Mentor Program
Late Effects After Cancer
“Curing the Cancer and the Patient,” a personal reflection by Doug Bank
President, Testicular Cancer Resource Center
Over the past thirty years there has been remarkable progress in the treatment of cancer. We have seen significant improvement in diagnostic tools and tests, anti-nausea drugs, and treatment methodologies. More and more people are either being cured of their cancer or are living with cancer as a chronic disease.
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As a testicular cancer survivor, I am fortunate that the treatment for testicular cancer has improved dramatically in recent years. If I had been diagnosed in 1974, it is quite likely that I would have had both surgery to remove my retroperitoneal lymph nodes and 2 years of chemotherapy to ensure that the cancer would not come back. These treatments would likely have caused serious and long term side effects, not the least of which is infertility.
In reality, I was diagnosed with my cancer in 1992. By this time, the state of the art had advanced to the point where doctors could reasonably assume that my cancer was Stage I and had not spread. They could similarly assume that if I did nothing other than surveillance and the cancer came back, I could be cured using a standard regimen of 9 weeks of chemotherapy. Fertility was very important to me, so I chose surveillance and nine weeks later my first child was conceived.
Everything worked out well for me. During the 18 years between 1974 and 1992, the chemotherapy protocol for testicular cancer was refined to use a less toxic combination that lasts only 9-12 weeks. Research now told doctors that men with Stage I nonseminoma could be cured of their disease 98% of the time. At about the same time, they also learned how to modify the retroperitoneal lymph node dissection so that it no longer invariably led to infertility. Most importantly, they realized that the treatments were very effective, so they began to look for ways to decrease the morbidity of the treatments without sacrificing the cure rate. I chose surveillance because, as long as the cancer did not come back, I could avoid treatments that could cause long-term side effects.
As president of the Testicular Cancer Resource Center, I have the pleasure of seeing most testicular cancer patients achieve a quick and durable cure. However, I also see how cancer and its treatment changes people and continues to affect their lives long after their treatments are over. Many patients find themselves abandoned or treated haphazardly by the system. It is as if the doctors care about killing the tumor instead of curing the patient. Achieving a disease-free status is certainly the primary goal, but it should not be the ultimate goal.
During the Survivorship Conference we learned that the factors affecting a person’s quality of life after cancer treatment included physical and medical concerns, psychological issues, social concerns, and existential or spiritual issues. In my experience dealing with testicular cancer patients, one or more of these factors is often present and can lead to a decreased quality of life. In fact, it is hard to separate these concerns, and a problem in one area is likely to compound a problem in a different area.
When most patients leave the doctor after having been “cured,” they want to know “What now?” The answer is far from predictable. Some doctors want to see them back in 2 months, some in 6 months. Some will order CT scans while others will not, and so on. This is not surprising because there are few published clinical practice guidelines advising the doctor what to do once a cure has been achieved, and those that do exist often contradict each other.
This is a general problem affecting many cancers, and it deserves more research and awareness because it is likely that many unnecessary and expensive tests are being prescribed while at the same time many patients are being excused from follow-up years too early. Unnecessary tests only exacerbate test anxiety, and increase the costs faced by patients who may not be able to pay, thus scaring them off of follow up altogether.
As with all cancers, the surgery, chemotherapy or radiotherapy used for testicular cancer can cause medical/physical problems after treatment. These problems can include infertility or sterility, hypogonadism, peripheral neuropathy, Raynaud’s Phenomenon, hearing loss, tinnitus, pPulmonary toxicity, and secondary cancers. These are all very real problems that should elicit better advice from doctors than, “You’ll just have to learn to live with it.”
Can something be done to avoid or remedy these problems? Men can bank sperm before treatment in order to preserve their ability to father children, but doctors need to be more proactive in recommending and assisting with sperm banking in the first place. Similarly, insurance companies need to be more willing to help pay for it. Banking sperm is almost certainly cheaper in the long run than more exotic fertility treatments or even adoption.
Hypogonadism, estimated to affect more than 16% of testicular cancer survivors, is a subtle disease that is often hard to diagnose. Hypogonadism can arise because a patient has lost both testicles or because his remaining testicle is not capable, due to congenital or treatment related issues, of producing enough testosterone to meet the body’s needs. It can lead to obvious symptoms such as loss of libido and hot flashes, but it can also lead to depression, fatigue, loss of muscle mass, and osteoporosis. Since most doctors know little about testosterone and many have been trained to believe that one testicle is always sufficient to produce enough testosterone for an adult male, the problem often goes untreated. In many cases, effort is wasted treating symptoms like depression, fatigue, or sexual issues without looking for a medical cause. Any quality-of-life research should be accompanied by the proper blood tests to ensure that the participants do not have an undiagnosed case of hypogonadism.
The other side effects mentioned above all arise as a direct result of the agents used to cure the cancer. Clearly it is better to have these side effects than it is to still have the cancer. However, most testicular cancer patients are otherwise healthy young men, and these side effects can greatly affect their long-term quality of life.
Better diagnostic techniques could reduce overtreatment and allow more people to avoid primary chemotherapy or radiation. Increased awareness and approval among doctors of surveillance for Stage I cancer could also decrease overtreatment. Continued research evaluating less toxic methods for treating the cancer or new techniques for protecting the body against certain side effects would be very beneficial. However, the very high cure rate associated with testicular cancer confounds the problem in that it is difficult to construct a study that ensures that any changes to the treatment protocols will not lower the cure rate. Without increased participation in clinical trials in the United States and elsewhere in the world, the sample sizes required to obtain useful information are too large to accrue. The sad thing is that many doctors are advocating the use of less toxic regimens, but it is all being done outside of the research community and, as a result, we do not know if the treatments are less toxic or equally effective.
As the number of long-term survivors increases, there must be a greater interest and focus on improving the quality of life for cancer patients before, during, and especially after their treatments. In my case, treatment advances have already made a big difference. For many other patients, additional improvements to the entire cancer treatment cycle are still sorely needed.