Cancer can become the fight of a lifetime.
Between the various treatments and side effects, the emotional rollercoaster, and the sometimes crippling financial costs, addressing various forms of cancer is rarely a painless battle.
Unfortunately, the challenges become even greater when the treatments simply fail.
If you or someone you know is struggling immensely with ineffective therapies, there is hope. Nowadays, new and exciting clinical trials may offer meaningful alternatives to standard protocols of care.
Thanks to certain cutting-edge trials, patients have unique opportunities they wouldn’t find elsewhere. From experimental medicines to sophisticated drug combinations, many of these approaches are not yet widely available.
They are, however, important considerations for those affected.
If you and your loved ones are considering joining a clinical trial, there is a lot to weigh. Whether it’s the potential benefits, risks, or impacts on daily life, the decision is seldom easy.
This article will offer some practical advice to hopefully make the whole process just a little bit smoother…
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While many clinical trials may not result in widely available treatments, some do. At the very least, they provide early access to therapies that show promise, and for many individuals and families impacted by cancer, that can mean the world.
At the same time, there are very real risks. New treatments may have unknown side effects, and in some cases, participants might receive a placebo or treatment that may be less effective than standard care.
In many cases, simply qualifying is difficult, as eligibility criteria can be strict and limiting.
When thinking about getting involved, always be wary of overly optimistic promises. If the trial is truly reputable, it will clearly explain both possible benefits and risks during the informed consent process.
Before agreeing to anything, prepare some relevant questions. The following concerns should be at the front of your mind:
You should also ask about the trial stages, including all three potential phases. If you have hesitation about continuing at any point, standard treatment may be your preferred option. In some cases, even after the trial concludes, extensive follow-up care is required.
Whatever you choose to do, do not be silent if you feel uncomfortable. There is nothing wrong with requesting time to think it over.
RELATED: The 10 Essential Steps That Increase Your Odds of Getting Into a Clinical Trial
If there’s one major downside to clinical trials, aside from potential side effects, it’s likely the time commitment. Many clinical trials may require multiple clinic visits, blood draws, scans, and other testing and monitoring procedures.
For many participants, this means time away from work, family, and normal life in general.
Depending on the nature of the trial, travel requirements can be significant, especially for trials at major cancer centers, which are not always easily accessible. Although some trials offer reimbursement for travel and lodging, not all do.
If you have a demanding job or work in a caregiving role, this time commitment may not be ideal. Nonetheless, the extensive time spent testing and monitoring is an indication of a good thing. It means the clinical researchers and investigators are watching everything closely, and that should at least alleviate some concerns.
Fear of the unknown is part of being human. So, it’s completely normal to feel anxious about joining a trial. Some people have a fear of receiving a placebo, others are apprehensive about experiencing unknown side effects, or “being a guinea pig,” and some are just worried that the trial will interfere with normal obligations and tasks.
To manage this fear, there are several things you can do. Firstly, remember that trials have multiple safety layers and strict oversight. Secondly, if you have the opportunity, try to talk to former trial participants. Thirdly and finally, focus on what you can control. In other words, don’t hesitate to pose questions, learn your rights, and know, unequivocally, that you can leave at any time.
And don’t forget the potential benefits.
Not only is there an opportunity to discover a potentially useful treatment for yourself, but overall, your participation contributes to research that could help future generations. Many Black patients report feeling empowered by this fact alone.
Some former participants may tell you exactly this.
It’s not all doom and gloom; neither is it all unicorns and rainbows.
Black cancer patients who have joined trials often share mixed, but hopeful, experiences. It all depends on who you talk to. Some will describe accessing treatments they otherwise couldn’t afford. Others may detail the close and continuous testing and monitoring they received.
One recurring theme is the importance of communication. That is, speaking with a trusted doctor who can fully explain the trial while also respecting participants’ decision-making.
Although the process can sometimes be highly demanding, many Black participants feel proud knowing their commitment helped reduce disparities in cancer outcomes.
At the end of the day, joining a clinical trial may not be right for you.
The important thing to remember is that it’s personal. This is an individualized decision, and it’s okay if others feel or think differently. In fact, this is often a key indicator of an informed opinion. Not every trial is right for everyone, and in some cases, certain people won’t even qualify to begin with, and that’s okay.
So make the decision that’s best for you, your prognosis, and the life you currently lead and plan to lead. Given that we all have different values, goals, and lifestyle circumstances, there’s nothing wrong with choosing differently.
That said, it’s a good idea to consider others’ input as well. Consider discussing the option with your oncologist, a trusted family member, and perhaps a patient navigator or support group. When you receive the consent form, review it carefully.
Not sure what’s being said? Ask for plain-language explanations of anything you don’t understand. By asking insightful questions and carefully weighing your situation, you can ultimately make the right choice for you.
Whether you choose to join a trial or not, advocating for yourself is a powerful step, in both clinical trials and most importantly of all, life at large…
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