Cancer Diary: Where to Find Clinical Trials -- and When They're Not an Option
When you’re facing cancer, especially a tough diagnosis or recurrence, one of the first questions you or your loved ones might ask is: Are there any clinical trials available? Clinical trials can offer access to cutting-edge treatments, experimental therapies, or more personalized care approaches — sometimes when standard treatments have been exhausted. But clinical trials aren’t always an option for every patient. And one of the most heartbreaking examples of this is cancer of unknown primary.
Where to Look for Clinical Trials
If you’re considering a clinical trial, there are several reputable ways to begin your search:
-
ClinicalTrials.gov: This is the largest and most comprehensive database of clinical trials in the U.S. and many other countries. You can search by cancer type, location, phase of trial, and eligibility criteria.
-
National Cancer Institute (NCI): The NCI runs its own trials and also supports trials at major cancer centers across the country. Visit cancer.gov and click on “Find NCI-Supported Clinical Trials.” They also have a helpline (1-800-4-CANCER) with specialists who can walk you through the search process.
-
Major Cancer Centers: If you're being treated at or near a major academic center (like MD Anderson, Dana-Farber, Memorial Sloan Kettering, or Mayo Clinic), ask your care team about any trials they’re participating in. These institutions often run trials that don’t appear immediately on public databases.
-
Patient Advocacy Groups: Organizations specific to your type of cancer often maintain curated lists of clinical trials and may even have patient navigators to help you find one that fits.
It’s important to remember that each clinical trial has strict eligibility criteria — age, stage of cancer, prior treatments, overall health, even lab results — to protect patients and preserve the integrity of the research.
When Clinical Trials Aren’t an Option: Cancer of Unknown Primary
When Carl was diagnosed with cancer of unknown primary (CUP), we hoped there might be a clinical trial out there that could give him a fighting chance. But his oncologist gently told us: there were none that applied. It was disappointing, but it also made sense.
Clinical trials are usually built around a specific type of cancer — breast, lung, colorectal, etc. — and the treatments being tested are designed to target the unique biology of that cancer type. With CUP, the body shows signs of metastatic cancer, but no one can find where it started. This makes it nearly impossible to match the patient with a trial that depends on targeting the primary tumor type. Without knowing what you’re fighting, it’s hard to choose the right experimental weapon.
And in Carl’s case, his cancer was already stage 4 when it was first diagnosed. It had spread to multiple organs, and the disease was advancing rapidly. There simply wasn’t time to pursue clinical trials — and that may also help explain why the primary tumor couldn’t be found. It had likely been growing and spreading silently for quite a while. By the time the symptoms became noticeable, the cancer had already overtaken the rest of the body. It was no longer possible to trace it back to its origin.
Stage of disease matters. Many trials — even those for advanced cancers — require a patient to be stable enough to undergo testing, wait for enrollment, and tolerate experimental treatment. When cancer is already moving faster than medicine, there may not be time to look around for options.
What You Can Do
If you or your loved one has been diagnosed with CUP or another rare or hard-to-classify cancer, here are a few thoughts:
-
Don’t hesitate to ask about clinical trials even if your doctor doesn’t bring them up. It’s okay to push for a second opinion, especially at a research hospital.
-
Ask if molecular profiling or genomic testing might offer any clues. Sometimes these tests can guide treatment even outside a trial.
-
Know that supportive care and standard treatments still matter. In Carl’s case, his doctors did everything they could to control symptoms and give him quality time. Clinical trials aren’t the only way to fight.
This is one of the hardest things to write about — not just the science of it, but the finality. There are moments in the cancer world where the door to “more” begins to close. When options shrink. When the trial just isn’t there.
But sharing what we learned might help someone else know where to look, what to ask, and how to prepare — even if the answer is no.
For more Cancer Diary posts, click HERE.
For more posts on Cancer of Unknown Primary, click HERE.
Blog editor's note: As a memorial to Carl Leaver, MSI Press graphic arts director and designer, who died of Cancer of Unknown Primary August 16, 2021, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog carries an informative, cancer-related story -- and is open to guest posts: Cancer Diary.
Check out recent issues.
 |
Follow MSI Press on Twitter, Face Book, Pinterest, Bluesky, and Instagram.
Interested in publishing with MSI Press LLC?
Check out information on how to submit a proposal.
Planning on self-publishing and don't know where to start? Our author au pair services will mentor you through the process.
Julia Aziz, signing her book, Lessons of Labor, at an event at Book People in Austin, Texas.
Check out our rankings -- and more -- HERE.
Comments
Post a Comment