A clinical trial is one way to advance colorectal cancer treatment options. But patients –and their doctors also – may think that clinical trials are a last-ditch effort in treatment, and that you need to be stage IV to be eligible. Maia Walker, the lead curator of the Fight CRC Clinical Trial Finder, addresses the top myths about clinical trials. 

Myth: A clinical trial is a last-ditch effort in treatment.

This is one of the worst myths in the house: “Clinical trials are the last resource.” Start researching clinical trials as early as possible, at the time of a cancer diagnosis. There are clinical trials for those just diagnosed; for those about to start the first line of treatment; for those that are in the third line of treatment; from stage I through stage IV.  Also, there are clinical trials that don’t provide active treatment for the disease, but that might ease side effects from treatments, or help family members to check if they are at increased risk. Those are incredibly important!

Be proactive: Research clinical trials even when you think they are not needed!

Clinical trials might be the chance to receive a treatment that is just about to be approved. For patients with the most common type of colorectal cancer (MSS), clinical trials allow them to receive new treatments from the emerging field of immunotherapy for colorectal cancer. Immunotherapy holds the potential to induce durable responses,  even if only a minority of patients currently respond. 

A good time to search for trials is when chemotherapy is working, when treatment is stable and tumors are shrinking, and you have figured out how to deal with the side effects. When you or a loved one are diagnosed, we recommend reading documents like the National Comprehensive Cancer Network (NCCN) patient guide for colon cancer and the NCCN patient guide for rectal cancer, as well as our clinical trials brochure and biomarker brochure. 

Take your time when reading through all of this information because at first, it all may feel overwhelming and not make sense. Over time, you will begin to understand. The NCCN lays out the different standard of care options for your stage and type of cancer. This will help you determine potential treatments that you have available. As you understand what is available to you, then you may consider clinical trials for “What treatment should I consider down the line?” or even “What clinical trials might help enhance my quality of life as a survivor?”

Research shows that a healthy lifestyle can lower the risk of getting colorectal cancer, decrease the risk of colorectal cancer coming back (recurrence), and even help prepare you for colorectal cancer surgery. In this regard, there are clinical trials that continue studying how exercise can contribute to prevent colorectal cancer, ease side effects from treatments, positively impact the immune system in NED (no evidence of disease) patients, etc.

Clinical trials not only exist to treat the disease itself, but also to enhance the quality of life for survivors. For example, some research studies enroll patients to help them manage side effects that can substantially alter both their sex life and fertility. All these trials are hardly "last-ditch effort” interventions!

Myth: Clinical trials include a group that receives a placebo, which can cause their cancer and symptoms to worsen.

When a clinical trial involves placebos (a treatment that is not real, whether a pill or a shot), it is imperative to note that the participants in the clinical trial continue to receive the standard of care treatment. In other words, at the minimum, participants receive all treatments they would receive if not in a clinical trial. Placebos are not used in clinical trials where volunteers will be harmed if they do not receive a real medical treatment for their condition. 

The point of the clinical trials is to evaluate the safety and effectiveness of treatments or devices; they aim to improve the health and quality of life of those participating and observe the ethical obligation to do no harm.

Myth: Clinical trials are biased.

Sometimes there are concerns or fears that people of color may get placebos, while a white person would get the “real” clinical trial medication, please be assured that is not how clinical trials work. 

Because people may experience the same disease differently, it is extremely important to include people with a variety of lived experiences and living conditions, as well as characteristics like race and ethnicity, and  age, so that all communities benefit from scientific advances in clinical trials.

Diversity, equity, and inclusion also relates to encompassing people of perceived “healthy” or “unhealthy” behaviors, environmental conditions, genetic variation or geographic ancestry, or underlying medical issues.

From the institution of the review boards to assure protocols are followed and organizations remain ethical and compliant through a 1993 law to include women and people from racial and ethnical minority populations in clinical research, strides have been made to ensure the entire population has access to clinical trials.

An extensive group and range of participants will augment clinical trials by providing real-world results.

Myth: Many participants die in clinical trials.

First, it’s essential to understand that while there are risks involved with clinical trials, there are also benefits. For example, suppose a patient is not responding to current treatments, but  potential clinical trial treatment side effects are scary and frightening. In this case, the same patient may decide the risks of trying a clinical trial outweigh the risks of waiting for another viable colorectal cancer treatment option to become a reality. 

Unfortunately, clinical trials do not always lead to lifesaving findings. However, people participate in clinical trials also for the greater good. Perhaps their lives were not extended or saved due to participation in a clinical trial, but every clinical trial yields findings, which contributes to and informs research. People participate to do their share in helping other people with colorectal cancer.

Myth: It’s impossible to get into a clinical trial.

While it’s not impossible to get into a clinical trial, it may be difficult, especially because most of us aren’t researchers by trade. Until a colorectal cancer diagnosis, most people don’t need to know anything about clinical trials. 

Fight Colorectal Cancer’s Clinical Trial Finder makes exploring clinical trials for MSS colorectal cancer easier and more patient friendly. 

Keep in mind, while it is not impossible to find clinical trials, it can be challenging because clinical trials often have a limited window of opportunity. This means people need to be persistent and continually search clinical trial options. 

There are clinical trials that patients can enter before a stage IV diagnosis or even once a patient has reached “no evidence of disease.” Many of these clinical trials are to investigate ways to enhance quality of life for colorectal cancer survivors.

To learn more about different clinical trials from stage I through stage IV, read the Clinical Trial Conversations Blog Series. This is a monthly series, discussing all the latest exciting clinical trials.

Myth: Once enrolled in a clinical trial, you cannot quit.

Clinical trial enrollment is completely voluntary. Before joining, you will sign an informed consent – a detailed document with all of the trial information. You can withdraw from the trial at any time, if you choose to do so.

The goal of clinical trials is to make cancer treatment better so people can live longer. Researchers and doctors follow strict guidelines to protect trial participants, while collecting information to assess medical protocols, treatments, and medical devices. They do this to learn if these novel interventions work and if they are safe.

Stay Tuned for More!

Once a month, Maia and Manju spend time unpacking important research trials, tips, and advice for our community. Be sure to subscribe to sign up with Fight CRC and join COLONTOWN’s online community to continue receiving the most relevant updates in the CRC world!

You can also follow Maia (@sassycell) and Manju (@manjuggm) to stay updated on research and trials and visit ClinicalTrials.gov for more information on trials.

Clinical trials are critical to finding a cure for colorectal cancer. As an advocacy organization dedicated to supporting and empowering a community of patients, caregivers and families, Fight CRC has partnered with COLONTOWN to deliver a monthly blog series highlighting everything patients need to know about clinical trials and the best treatment options available.

In this series, we hope to cover promising trials that are enrolling, lessons learned from past research, logistics and resources to joining a clinical trial, and provide relevant and timely updates for our colon and rectal cancer community.