Five Myths about Clinical Trials that Just Won’t Go Away

In December, I traveled to Washington, D.C., and had a pleasant visit with a friend I hadn’t seen in several months. I drank a lemonade while we filled each other in on the latest news, hair styles, and our holiday festivities. Between sips I gave her my arm. She took my blood, and then injected me with an experimental cancer vaccine. [Record scratch.]

Okay, so the friend was a research nurse, and our meeting place was Sibley Memorial Hospital, where I’m participating in an immunotherapy clinical trial for a vaccine to prevent my breast cancer from recurring.

Surprised? Many people are when I describe the clinical trial experience. Cancer clinical trials have something of an image problem. I’m not the only one who thinks so: health care blogger Cancer Geek called for their complete rebranding in a recent post.

But since we’re a ways away from wholesale change like that, I thought we could take a moment to dispel some of the biggest misconceptions that I’ve encountered since enrolling in my clinical trial.

1. Couldn’t you just be getting a placebo, and miss out on ‘real’ treatment?
   Not really. Cancer clinical trials don’t work that way. Patients always receive the treatment(s) that are considered the standard of care, and then the protocol being tested is administered on top of that. In the case of my vaccine trial, I had already completed the standard treatment, and was cancer-free, before beginning. Other trials may begin right at the start of treatment and pair an existing therapy with the one being studied. For example, a recent study of Perjeta (pertuzumab) for patients with metastatic breast cancer compared a group getting the standard treatment—in this case, chemotherapy and Herceptin (trastuzumab)—with a group getting standard treatment plus Perjeta. Bottom line: you won’t miss out on proven treatments by participating in a clinical trial.
2. You must have exhausted all other options. The only patients who enroll in clinical trials are ones who have failed other treatments.
   Actually, there are clinical trials available for patients of all stages, and at various points during treatment. I had finished treatment for early-stage breast cancer about four months before I enrolled. Others are before surgery. You just have to check.
3. If you didn’t qualify for one clinical trial, you won’t get into any others.
   Every trial is different, with different inclusion and exclusion criteria. I was rejected from two trials before worming my way into the one I’m in. Sometimes it’s just a matter of trying until you find the right one.
4. You need to spend hours doing research to find a trial.
   It’s actually not too hard to find a trial if you’re comfortable using the Internet. There are several sites you can use to search. I found mine on ClinicalTrials.gov. You can also search  CRI’s free Clinical Trial Finder online or call at 1-855-216-0127, and a trained navigator will help connect you with relevant cancer immunotherapy studies.
5. It’s terrifying to get an experimental drug.
   I totally understand this feeling. Sometimes there’s nothing scarier than an unknown quantity. And some trials can have serious unknowns. But truthfully, the most terrifying thing for me was finding out I had cancer. Everything else kind of paled in comparison.

   I considered potential risks and side effects carefully before enrolling. Everyone should. But after that, it wasn’t something I worried too much about. For one thing, my trial was phase II, meaning that most safety concerns had been addressed during phase I. (For more on the different trial phases and what they mean, have a look at The Answer to Cancer’s guide to trial terms.) But there’s not a guarantee – the thick consent document you sign at the beginning of the trial makes that clear.

   At the end of the day, it’s important for you, the patient, to be educated about the possible risks and benefits, weigh those carefully, and make a decision you feel comfortable with. If you are feeling terrified about any phase of treatment, it’s time to speak with your doctor.

Every trial, just like every person and just like every cancer, is different. I feel extremely lucky to have participated in the one I’m in. It’s minimally invasive, with negligible side effects, and the early results are very promising. That’s not true for all trials or for all people.

But please, don’t let fear of what a trial might be like stop you from seeing for yourself. Only 3% of cancer patients participate in clinical trials. I can’t help but think that these types of misconceptions contribute to the tininess of that number. So let’s spread some knowledge.