The decision to participate in a clinical trial can be especially overwhelming following a metastatic breast cancer (MBC) diagnosis. From the difficult decision of whether to participate to managing the unknowns of side effects and outcomes, people diagnosed with MBC must weigh personal risks against potential benefits, which can lead to an array of complex emotions surrounding clinical trials.
For some, the decision to participate in a clinical trial provides them with a sense of control amidst a diagnosis that is out of their control. Others make the decision to participate in a clinical trial to pay it forward and give back to others with MBC. And some make the decision to participate in a clinical trial with the hope of extending their life, so they can continue experiencing precious moments with loved ones.
individuals living with MBC, Phyllis and Cyndi, who describe why they each chose to participate in clinical trials.
Whether you decide to participate in an MBC clinical trial or you decide it’s just not the right time or fit for you, the first step is clinical trial education because you need to be well-informed of what you are saying ‘yes’ or ‘no’ to.
Clinical Trial Education
Determining if you should join a clinical trial and finding the right clinical trial will be one of the most important decisions you make in your treatment plan. You will likely have several questions that need answers before you can decide.
When should clinical trials be considered? People diagnosed with MBC may think of clinical trials as another treatment option available to them, not just as a last resort. The best time to consider a clinical trial is usually following your diagnosis (before treatment begins), when your oncologist is considering a change in treatment or when there are limited treatment options.
Will you get standard care on a clinical trial? Individuals enrolled in a clinical trial will always receive standard of care at a minimum, which is the treatment you would receive even if you had not enrolled in the trial. However, by enrolling in the clinical trial, you may receive additional treatment(s), procedures and/or tests, depending upon the trial.
How do you find a clinical trial and know if it’s an option for you? The easiest and fastest answer is to discuss clinical trial options with your doctor(s). It is good to be prepared with a list of questions to ask your doctor and/or clinical trial nurse or research coordinator.
You can also do your own investigative work to find clinical trials that you are eligible for, especially if your doctor is not as familiar with them or if the health system where you receive care does not have active trials at their location. There are several websites that can help you find clinical trials:
- BreastCancerTrials.org, in collaboration with Komen, offers an online tool to help you find a trial called Metastatic Trial Search.
- CenterWatch has a clinical trial search engine.
- TOUCH, The Black Breast Cancer Alliance, also has an online search engine called When We Tri(al).
- You can also search government websites: National Cancer Institute (NCI) clinical trials website and/or National Institutes of Health (NIH) clinical trials website.
If you enroll in the clinical trial, will you have better outcomes? This is not a question that can be answered because you will not know if the trial will improve your outcomes before joining. The overarching goals of a clinical trial are to test the safety and benefit of a new treatment, new doses of an existing treatment and improving quality of life.
What can you expect during a trial? While you can’t know if a clinical trial will improve your outcomes, you can be aware of the possible benefits and drawbacks before enrolling. Benefits could include improved progression-free survival, overall survival, improved quality of life and/or expanded care. Drawbacks or risks may include both expected and unexpected side effects, extra clinic visits, tests or scans and more travel.
Whether you say ‘yes’ or ‘no’ to the trial today, can you change your mind later? Yes! Participation in a clinical trial is voluntary. Just because you consent to join the trial does not mean you are forced to complete it. You can leave the trial at any time and for any reason. If you initially say ‘no’ to the trial, you may or may not be able to join the trial later. This will depend upon your eligibility and if the trial is still recruiting participants. But there are many clinical trial options and new ones open regularly, so you should keep checking to see if you can find one that fits you.
You can read an expanded list of questions on clinical trials here.
Empowerment Through Clinical Trials
Many individuals feel empowered participating in clinical trials. You can’t control the MBC diagnosis, but you can control how you respond to the diagnosis.
Your doctor(s) should provide you with various treatment plans, which may include clinical trial options. While they are the experts, providing information on the benefits and risks of a trial, you will be the one to ultimately decide if a clinical trial is right for you. If you are not sure, you can always get a second opinion. As previously mentioned, you are free to change your mind later, even if you say ‘yes’ now.
Although an MBC diagnosis can be a devastating reality to face, a response motivated by wanting to contribute to clinical trial breakthroughs can provide a renewed sense of purpose. It is one way to make the best of bad news, which can be empowering.
By participating in a clinical trial, the initial feelings of fear, anxiety or anger may be replaced by relief, curiosity and hope. It can also help create camaraderie as you interact with other individuals in the clinical trial, building a shared community of support.
Clinical trials also expose you to a broader team of medical care professionals – the clinical trial team, who can provide extra touch points of care. You are essentially empowering yourself with more experts to monitor your treatment, symptoms and quality of life.
Individuals diagnosed with MBC carry the emotional weight of uncertainty and some choose to be part of clinical trials. At the heart of clinical trials is hope – hope for new treatment options, extended time, enhanced quality of life and progress that could help others in the future.
You may feel like you are facing an overwhelming decision as you weigh the risks and benefits of joining a clinical trial. Whether it’s needing access to educational materials or emotional support, the Komen Patient Care Center can help. Contact the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877-465- 6636) or email clinicaltrialinfo@komen.org. Se habla espanol.
