Making the decision to sign up for a clinical trial can be complicated.
When 45-year-old James learned that, despite surgery and chemotherapy, his colon cancer had recurred, he found himself faced with a difficult choice: try the standard of care again (the same chemo he had just gotten, which had not been wiped out the cancer), or sign up for a clinical trial and get an investigational chemotherapy regimen.
James felt overwhelmed having to make such a decision. “When I was first diagnosed, the doctors told me what to do and I did it, but now I have to decide what to do! It feels unfair that I have to make this decision, how am I supposed to know what to do?”
Though clinical follow very strict guidelines to make sure the trial is safe and ethical, clinical trials are, by definition, investigational, meaning that the outcome is not certain. For patients like James this uncertainty can be very difficult to deal with: “I already don’t know why my cancer is back or how long I will live (cancer prognosis anxiety), so why would I do a clinical trial when I don’t even know if it will work?”
Patients decide to participate in a clinical trial, and work on tolerating the uncertainty, for a variety of reasons. Some sign up because there is no other evidence based therapy that is proven to work for their cancer situation (tumor type and stage-how far it has spread). Some patients are motivated by a desire to be part of the search for the cure, the ultimate goal of cancer research, getting rid of cancer all together. And others participate because they want to gain access to medication that may not be available otherwise, new drugs that are yet to be approved by the Food and Drug Administration or yet to be sold on the open market or paid for by insurance companies.
For James, this third reason was enough for him to want to participate in the clinical trial instead of repeating the chemotherapy regimen he had already been through. “I would rather try something that may work then hope that the old way works the second time. I just don’t have faith that the old chemo will work for me now.”
James did have to work hard to control his worry related to the clinical trial outcome. In some ways, the actual participation in the clinical trial itself was therapeutic. Being part of a clinical trial meant that he came into the cancer center on a more regular basis, and saw a specifically trained group of clinical trial researchers each time. “I like meeting with my trial team, they follow my labs really closely, they all know my story and they really pay close attention to all my symptoms.” James did have extra paperwork to complete for the trial, but he was able to do that in the mornings so that his afternoons were free to spend time with his kids. Having the investigational medication cost covered by the clinical trial was also reassuring to James. “By participating in this trial I know that I am helping medical researchers understand and fight cancer, and it does feel good to know the trial is paying for the medication!”
For as upbeat as James was most of the time, he still struggled with worry about his cancer progressing (cancer prognosis anxiety) and how much time he had left. James accepted the reality of his cancer being advanced, and that he could only stay in the clinical trial until the cancer progressed (then he would likely return to old chemotherapy medications or consider palliative hospice care), but he still wanted to be able to live as fully as possible while he could. “I am young, and if I worry about cancer all the time then I won’t be able to really live my life. I have to find a way to hang out with my kids and get my work done without cancer worry all the time.” James developed a plan for managing his cancer prognosis anxiety, and it really helped him live in the moment, appreciate and even enjoy each day a bit, even while he was in the clinical trial for colon cancer.
Here are some of the things that helped James:
1. Stay informed. You can find information about medical research all over the country at clinicaltrials.gov.
2. Know your team and pick a point person. The point person is who you call with questions or symptoms while you are being treated with the investigational medication.
3. Remind yourself that by participating in the clinical trial you are contributing to the cure for cancer and thus helping countless other people.
4. Remind yourself that you have access to medications in a clinical trial that you would not otherwise receive.
5. Pay attention to self-care. Good sleep habits, time for relaxation and gentle exercise, healthy foods all help manage side effects of cancer and treatment.
6. Put cancer away every day. Make time for life (friends, family, pets, work) and try to put cancer away (“I will think about this, deal with this, later” – even if for 1 hour at a time).