Why Take Part in a Clinical Study
Cancer treatment involves a number of nasty moments—lots of needle sticks, the placement of ports and tubes, and the biggies like surgery and chemotherapy. So why would a cancer patient volunteer for even more of these nasty moments by taking part in research?
Seattle Cancer Care Alliance is a research institution, as are its parent organizations, and clinical studies are essential to its mission of finding new and better ways to treat cancer.
Clinical trialsAs a research facility, SCCA attracts patients who are willing to participate in scientific studies, although each person's reasons for doing so are probably unique.
Some women with breast cancer, for example, sign up for breast cancer clinical studies for the sake of their daughters and granddaughters, Dr. Julie Gralow says, "So that if and when their daughters are dealing with it 20 years from now, there will be better treatments."
Dr. Gralow, a medical oncologist who treats women with breast cancer and conducts research as well, says that no one should take part in research if he or she has grave reservations. But on the other hand, our knowledge of cancer would not have advanced without cancer patients who were willing to take part in clinical studies.
"My career is to advance the science of breast cancer, and the only way to do it is to test in humans," Dr. Gralow says.
Other SCCA doctors say that they find the many of their patients are interested, even eager, to participate in clinical research. One reason is that they are interested in new or innovative treatment options that are not offered at every medical oncology office.
Things to considerIf you are considering a clinical study, you should of course discuss the study with your doctor to make sure that you qualify and that your doctor thinks the study is appropriate for you.
In addition, researchers say, you should consider how much is known about the investigational drug or combination of drugs.
Then, you should compare the alternatives, whether that is the standard treatment for your disease or another clinical study. If the standard treatment works very well, it's hard to consider alternatives, especially if they have risky side effects. But if the standard treatment works less well, there's less to lose, and potentially much more to gain, from trying something new that looks encouraging.
Patients should also be reassured, Dr. Gralow says, by the fact that clinical studies are covered by international conventions obligating investigators to gain the informed consent of participants. "There are significant protections in place," she says.
Reasons to participateOnce you've made the comparisons suggested above, consider the following reasons to participate:
- You may receive better care. Cancer treatment in a clinical study offers the best care, according to the National Cancer Institute.
- You may get closer monitoring. This is a plus for many people who have fears and concerns that can be allayed by frequent checkups and conversations with doctors and nurses.
- You may gain access to new drugs that are not available otherwise.
- You may want to help others.
- You may want to help answer important scientific questions.
Reasons NOT to participateClinical studies are not right for everybody. Some reasons you may decide not to participate:
- Fear of the unknown. Some patients fear that they would receive an untested therapy or one that is worse than the standard treatment. This fear is unfounded, Dr. Gralow says. Researchers must have good reason to believe a new therapy will be at least as good as the conventional therapy before they test it on human subjects.
- Loss of choice. Patients will typically be assigned randomly to one arm or another in a clinical study. If you signed up for a clinical study to get access to a new drug, you may be disappointed. In the early trials to determine whether lumpectomy was as safe as mastectomy, for example, women were assigned randomly to have a breast removed or not.
- You don't have the time. The downside of all that extra attention and testing is that it takes time. You'll spend more time at SCCA if you participate in a study than you would otherwise.
If you would like to find out what clinical studies and research are available, the first step is to talk to your doctor. Then do some research on the research. A good place to start is the National Cancer Institute's web site.
Research at SCCAOne of SCCA’s missions, Dr. Gralow says, is to “translate” the research being done at its parent organizations to a clinical setting. In other words, to get the research out of the lab and into the clinic where it can benefit patients.
Dr. Gralow carries a colored-coded booklet in the pocket of her white lab coat. The thick little book is a listing of all the breast cancer clinical trials and research studies that are open here at SCCA, as well as through the Southwest Oncology Group, a clinical trials group under the NCI to which SCCA belongs, and elsewhere. Flip to the blue section for pharmaceutical trials, or yellow for prevention.
Dr. Gralow says that she always considers what clinical studies might be appropriate for her patients at the time she is developing a treatment plan. She occasionally refers a patient to a clinical study elsewhere, at the NCI, for example.
Some other types of cancer have a number of studies available, while others, such as head and neck cancers, have very few.
Some clinical trials involving SCCA patients take place at the Fred Hutchinson Cancer Research Center, one of our parent organizations. For a list of lung cancer trials at FHCRH, go to more lung cancer trials.
Men with prostate cancer may want to consider enrolling in one of the many studies underway at UW Medicine, one of our parent organizations.
Bone marrow transplantation (now more commonly called stem cell transplantation) was developed by researchers at the FHCRC, and it is the most fundamental advance in cancer treatment of the last quarter century. One factor for improving outcomes and increasing survival rates is research. Studies are focusing on decreasing the incidence and severity of complications such as acute graft-versus-host disease.
All of our patients who receive transplants do so in clinical studies. To read more, click here.
Sign me upWhy should you sign up for a research study when you are already overwhelmed by the demands of treatment?
Consider this: Taking part in a research study or clinical trial is a way of taking back control of your life and your disease. You are making a contribution only you, a person with cancer, can make.
It gives you a focus that may have been lost in the weeks and months of worrying about cancer. And you are making a gift to the future, a future where cancer is not the dreaded disease it is today.