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Patient Education — Clinical Trials

Clinical Trials: Facts vs. Fear

The fears that keep patients away — and the truth behind each one.

You've probably heard that clinical trials mean fake drugs, being a guinea pig, insurance denials, and giving up your own doctor. Most of it isn't true — and once patients learn the facts, most say yes.

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You are always in control: enrollment is your choice, and you can leave at any time without affecting your care. The right question is not ‘should I be afraid of a trial?’ but ‘is there a trial that could help me?’

Side by side

Clinical trials vs. standard treatment

Here's how the clinical trial path compares with the standard-of-care path — sticking only to FDA-approved treatments.

Treatment options

Clinical Trials Path

Effectively unlimited

Thousands of trials exploring newer, more advanced treatments

Standard of Care Path

Limited

Only the finite set of already-approved drugs

Cost to you

Clinical Trials Path

Little to none

Experimental care provided free; travel, lodging & meals often covered

Standard of Care Path

Can be severe

Cancer care is a leading cause of medical bankruptcy in the U.S.

Response monitoring

Clinical Trials Path

Frequent

Imaging typically every few months, so nothing effective is missed

Standard of Care Path

Less frequent

Often many months to a year or more between scans

If it isn't working

Clinical Trials Path

Move on quickly

Caught early; you switch to the next trial or standard option

Standard of Care Path

Caught later

May take longer to detect and change course

Running out of options

Clinical Trials Path

You can keep going

Alternate trials with standard care throughout your journey

Standard of Care Path

Finite

Once approved options are exhausted, the toolbox is empty

Every situation is different, and standard treatments remain the right choice for many patients — but a trial is rarely the lesser option people assume it to be.

Why this matters

Fear and misinformation keep patients away

“I might get a fake drug instead of real treatment.”

“I don’t want to be a guinea pig.”

“My insurance won’t cover an experimental treatment.”

“I’d have to leave my own doctor.”

If any of these sound familiar, you’re in good company. Most cancer patients believe at least one of them which can significantly limit their treatment options— and it’s a big reason fewer than 5 of every 100 cancer patients ever enroll in a trial. But when you look closely, nearly every one of these concerns turns out to be a myth. Here’s the truth behind each of these myths and many more, so your decision can rest on facts instead of fear. Because the reality is this: most patients say yes to a clinical trial once it’s offered to them.

55%

of patients say yes to a trial once it’s actually offered to them

<5%

enroll overall — mostly because no trial was ever offered or explained to the patient, not because they refused

Before we bust the myths

How a clinical trial actually works

A lot of fear comes from not knowing what a trial involves. Every treatment travels the same carefully staged path — years of testing before it ever reaches a patient, and several more phases before it can be approved. Understanding these phases makes one thing especially clear: where a placebo can and cannot appear.

  1. 0

    Preclinical

    In the lab — no patients yet

    Years of testing in cells (petri dishes) and animals such as mice, in a pharmaceutical or academic lab, to see whether a treatment is promising and safe enough to try in people.

    No placebo
  2. 1
    Clinical Trial

    Phase 1

    ~15–30 patients

    The first test in humans. It checks safety and finds the right dose. Everyone receives the actual treatment.

    Never a placebo
  3. 2
    Clinical Trial

    Phase 2

    ~up to 100 patients

    A larger group tests how effective the treatment is and watches safety more closely. Everyone still receives the actual treatment.

    Never a placebo
  4. 3
    Clinical Trial

    Phase 3

    ~300 to 3,000, often global

    Large trials compare the new treatment against the current standard of care to confirm it truly helps. This is the only phase where a placebo is even possible — and only in specific situations.

    Placebo only sometimes
  5. ✓

    FDA Approval

    Available to all patients

    Only after all of this — often 10 or more years of testing — can a treatment be submitted for FDA approval and offered as standard care.

    In your care now

So what about placebos? In cancer, a placebo is never used in Phase 1 or Phase 2. It can only appear in some Phase 3 trials, and only when it would be ethical — either when there is no existing standard treatment to compare against, or in an “add-on” design that compares standard care plus the new drug against standard care plus a placebo. In that design, every participant still receives the full standard of care. No one with a treatable cancer is left with nothing.

Separating fact from fiction

The beliefs — and the realities

What stops most cancer patients from enrolling in a clinical trial — or even considering one — isn't the trials themselves. It's the many myths and misconceptions surrounding them. Here are the ones we hear most often, each paired with the reality that dispels it.

Myth

“Trials always involve experimental, non-FDA-approved treatments where we don't know how they'll work or what side effects they cause — I don't want to be a guinea pig.”

Fact

This is the fear that stops the most patients — and it rests on an outdated picture of what a trial is.

1. Most trials aren't testing unknown drugs. A large share investigate treatments that are already FDA-approved — just used in a different cancer type, at a different stage, or in a new combination. The drug's safety and behavior are often already well understood; the trial is testing whether it can help in a new setting.

2. Today's treatments are designed with far more knowledge than the ones that came before. Older cancer drugs were developed when we understood much less about the biology of cancer. Modern therapies — theranostics, immunotherapies, mutation-directed treatments — are built around a specific target, so we can often see where a treatment goes in the body and predict its side effects far more accurately.

Think of car safety. In the 1970s, “safe” meant seat belts and blinkers. Today's cars have airbags, automatic braking, even self-driving features — built on decades of added knowledge. Cancer care made the same leap: in the 1970s treatment largely meant broad chemotherapy; today it includes precise, targeted approaches like theranostics, immunotherapy, and mutation-directed drugs.

3. In truth, every medicine is an unknown for the individual until they take it. Even a long-approved drug is never guaranteed for you — penicillin can trigger an allergic reaction, a blood-pressure pill or antibiotic may simply not work. A trial treatment is held to the very same standard as any prescription: it has to actually work for you and be tolerated for you to stay on it. If it doesn't, you and your team change course — exactly as you would with any approved medication.

Add to this the extensive laboratory, animal, and earlier-phase human data behind every trial, plus continuous safety monitoring, and the picture flips: you are not a guinea pig — you are a closely watched participant, often receiving tomorrow's medicine years early.

Myth

“There's a good chance I could get a fake, placebo treatment.”

Fact

Not all clinical trials even have a placebo group — in fact, most do not. And placebo-only treatment is never used in Phase 1 or Phase 2 cancer trials; in those, everyone receives the actual treatment. A placebo can only appear in some Phase 3 trials, and only when it's ethical to use one.

That happens in just two situations: when there is no existing standard treatment to compare against, or in an add-on design that compares standard care plus the new drug against standard care plus a placebo. In that second case — the common one — everyone still receives the full standard of care; the only difference is whether the extra component is the new drug or a placebo.

Trials are also watched closely while they run. An independent monitoring board reviews the results at regular intervals, and if the real drug is clearly outperforming the placebo, the trial can be stopped early — and patients who were on the placebo are often offered the effective treatment, sometimes years before it reaches the public.

Withholding effective treatment from a cancer patient is considered unethical, so it isn't done. And you're always told exactly how a trial is designed, including any placebo, before you consent. (See the phases above for where a placebo can and can't appear.)

Myth

“Research is expensive and experimental, so my insurance may deny coverage.”

Fact

It would actually be illegal for a company to charge you — or bill your insurance — for a treatment or imaging test that isn't yet FDA-approved for your situation. So any part of a trial that is experimental, or required only because of the trial, is provided at no cost to you or your insurer.

Your insurance continues to cover the routine care you'd have received anyway, and US law generally requires insurers to cover those routine costs for a qualifying trial. The research-specific parts are covered by the trial.

And it often goes further: the majority of cancer trials not only provide the experimental care free, they frequently cover travel (airfare or mileage), hotel stays, and meals when needed. For many patients, taking part in a trial ends up costing less than standard treatment.

Myth

“If a trial existed for me, my cancer team would have mentioned it — they know all the trials for my cancer and always discuss every option.”

Fact

No single physician can know them all. There are roughly 90,000 cancer clinical trials worldwide, with several thousand for each of the common cancers like breast, lung, prostate, and colon. They open, close, and change constantly, and many run at other centers. Even a research-active doctor is usually familiar with only a small fraction — often just the studies at their own institution. That's why many patients leave an appointment believing every option was covered, when what was actually discussed were the standard, FDA-approved treatments. It's completely reasonable to search independently, ask your team directly, or seek a second opinion about trials you find.

Myth

“All cancer doctors take part in clinical trials, so mine would offer me one if it made sense.”

Fact

The majority of cancer physicians do not run clinical trials at all. Conducting trials takes dedicated research staff, funding, and infrastructure that many practices — especially community clinics, where most patients are treated — simply don't have. Studies find that the doctors who do recommend trials are usually researchers themselves, offering a study at their own institution. So whether a trial ever comes up can depend less on what's best for you and more on whether your particular doctor happens to run research.

Myth

“Trials are only for when I've failed every FDA-approved treatment, and I can only ever join one.”

Fact

Waiting until you've exhausted every approved option leaves you with far fewer choices — and can make you ineligible for trials you'd have qualified for earlier.

Consider the scale. There are only around a dozen classes of FDA-approved drugs for advanced prostate cancer — that is the entire toolbox your oncologist has built up from the beginning of time until today. Yet there are thousands of clinical trials exploring newer, more sophisticated treatments — and better ways to find and track the cancer — that you can only reach through a trial. They span the whole journey, from earliest diagnosis all the way through advanced disease.

And you're not limited to one. Many patients, once they understand this, take part in several trials over the course of their disease, alternating them with standard treatments — giving themselves more options at every step rather than saving trials for the very end.

Myth

“If a trial treatment is effective, it'll get FDA approved eventually — I'll just wait until then.”

Fact

It's true that if a treatment proves effective, it goes on to FDA approval and becomes available to everyone — that's the whole purpose of the process. But two things make "just waiting" a costly gamble.

First, waiting can cost you access. Approval often takes many years, and eligibility windows can close as your disease progresses — so a treatment that could help you now may be out of reach by the time it's approved. Trial participation is how patients reach tomorrow's therapies today.

Second, a treatment can only prove itself if patients enroll. A large share of cancer trials never reach the finish line — not because the drug failed, but because too few patients took part to answer the question, and the cost of keeping the trial open became impossible. About 1 in 5 cancer trials ends early for reasons unrelated to whether the treatment worked, and poor enrollment is the single most common cause.

So the treatment you're waiting for may never arrive: promising therapies that could add good, quality years for many patients often die on the vine — abandoned before they ever reach the FDA, simply because not enough people enrolled. Every patient who takes part helps bring that treatment to everyone who comes next.

Myth

“I might lose time on a trial when I could have been on an approved treatment.”

Fact

You don't stay on something that isn't working. Whether it's a trial treatment or an FDA-approved one, if it isn't helping, you're taken off it and moved to the next option — which might be a different trial or a standard treatment. Trials are also designed so you receive at least the current standard of care, never less; often it's the standard plus a promising new option.

And here's what surprises many patients: you're usually watched more closely on a trial than on standard care. Many cancer trials require imaging every couple of months to check whether the treatment is working — so if it isn't, it's caught quickly and you can move on. On standard-of-care treatment, it's not unusual to go 6 to 12 months between scans. Far from losing time, closer monitoring often means less of it is wasted on a treatment that isn't helping.

Myth

“I might be 'blinded' and lose control over which treatment I get, or be randomized to something I don't want, or forced to stay on the trial.”

Fact

For the vast majority of trials, a patient will not be blinded to their treatment. They will know exactly what treatment they will be receiving on the trial. You also choose whether to enroll, and you can leave a trial at any time, for any reason, without affecting your future care. Randomization and blinding are there to produce trustworthy answers — but consent is fully informed and always voluntary. You are never trapped.

Myth

“I only want FDA-approved treatments, because those are proven to work in everyone and have no side effects.”

Fact

No treatment works in every patient or is free of side effects — approved drugs included. FDA approval means a treatment's benefits were shown to outweigh its risks for a defined group, not that it's universally effective or side-effect-free. Trials are simply how those approved treatments came to exist in the first place.

Myth

“I may have to leave my current cancer physician, and I like them.”

Fact

You can definitely maintain your current cancer team. You would just also be under the care of another cancer physician just for purposes of the clinical trial. A trial may require traveling to the trial site for visits, scans, or lab work. Both physicians should communicate with each other throughout the time of the trial. When the clinical trial has been completed you would continue fully with your primary cancer team.

Myth

“Someone other than my physician will be making my treatment decisions.”

Fact

A trial follows a careful pre-set plan (the protocol), but your physicians still direct your care within it, and your safety always takes priority over the study. You remain a partner in every decision, and you can stop at any time.

Myth

“I'm afraid the pharmaceutical company is using me as a guinea pig, and that the trial wasn't reviewed by anyone outside the company.”

Fact

Every trial is reviewed and monitored by independent bodies — an Institutional Review Board (ethics committee), often an independent Data Safety Monitoring Board, and regulators like the FDA — none of which work for the sponsor. These groups can pause or stop a trial to protect participants.

Myth

“Research only tries to make patients live longer, without regard to quality of life.”

Fact

Modern trials formally measure quality of life, symptoms, and side effects as key outcomes — not just survival. Reducing toxicity and preserving daily function are central goals of much current research, including in theranostics.

Fact

“Trials do require extra tests, procedures, and doctor visits.”

Fact

This one is true. Trials involve closer monitoring — more scans, labs, and visits — which means extra time, though it also means your health is watched more carefully than usual. Importantly, any extra testing that a trial requires beyond standard care is at no charge to you — the trial sponsor is required to cover it. Ask the team for the visit schedule up front so you can plan, and ask what support (travel, scheduling) is available.

If you decide to explore one

What to expect as a participant

The process is more structured — and more protective of you — than most people imagine. Here's how it typically unfolds, step by step.

  1. 1

    An introduction to the trial

    Your own physician, the trial's investigator, or a research coordinator introduces you to a trial that may fit. They explain what it's studying, how it works, your other options, the likely pros and cons, and the schedule — and they should answer all of your questions before you decide anything.

  2. 2

    The informed consent form

    You're given an informed consent form to review. It's written by the trial's sponsor and approved by an independent review board (an IRB), and it's meant to be in plain language — typically around a sixth-to-eighth-grade reading level — so you can actually understand what you're agreeing to. Take it home, share it, and ask anything.

  3. 3

    Screening

    Only after you sign consent does screening begin. It may include labs, scans, an EKG, and a review of your medical history and other conditions — to confirm the trial is a safe and suitable fit for you.

  4. 4

    Enrollment — if you qualify

    Trials have a strict list of inclusion and exclusion criteria. If you meet them, you're enrolled and then followed closely, exactly as the study protocol specifies — often with more monitoring than standard care.

  5. 5

    You stay in control

    You continue for as long as the trial allows and it's helping you — but you are always free to stop and come off the trial whenever you wish, for any reason, without affecting the rest of your care.

Consent is not a contract that locks you in. Signing it means you've been fully informed and agree to begin — it never signs away your right to change your mind.

The takeaway

Ask, don't assume

Most of what keeps people from trials turns out to be a misunderstanding. Trials are voluntary, independently monitored, and designed so you receive at least the standard of care — often more, with closer attention.

Finding the right trial can genuinely be difficult — with tens of thousands of studies open worldwide, no patient, and no single doctor, can track them all. That is exactly why resources like ClinicalTrials.gov and TheranosticTrials.org exist: to help you and your care team search what is actually available for your cancer. If a trial interests you, the best next step is simply to ask your care team about it, or to reach out to a trial site directly. Questions are always welcome.

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Educational content, not medical advice. Always discuss your specific treatment plan, risks, benefits, and instructions with your Theranostics care team.