So, You Want a Cure for Cancer

(Author note: Apologies for the length of this, but the journey from research lab to clinical trial, and the all-important funding, is also long.)

I’m a Guinea pig.

Scratch that, Amber*, a nurse on my research team, a Clinical Team Nurse Manager in Gynecologic Oncology Research at the University of Wisconsin Carbone Cancer Center, finds that term offensive and prefers to see it as an “opportunity.”

I’m a volunteer. And like all Guinea pigs, er opportunists, I represent a part of science that doesn’t get anywhere near enough attention.

We often hear about breakthroughs in medical science representing a “potential cure,” or maybe the university received a large grant to do clinical research. Then, crickets. A long time of crickets … or even forever.

Rarely, lab research leads to clinical trials. Then, a new treatment may be approved for use by the Federal Drug Administration (FDA). We’re talking, in some cases, decades. For example, a promising treatment using a CRISPR enzyme suggests it could target tumor RNA and “Once the enzyme finds its partner, it slashes the cell’s genome to pieces.” It’s 2026. The researchers estimate it might reach clinical trials as soon as 2030.

The “Cancer Moonshot,” established in the Obama administration—over a decade ago—and continued under Biden, is only just beginning to see the fruition of all those funds going into research. It takes years to collect the data, test the processes, explore the outcomes, peer review the information, gain approvals for human or animal research, before ever bringing it to patients.

Clinical trials, in many ways the most important step, can be the most fraught part of the process. What works in the lab, or in a proxy like a mouse, doesn’t necessarily work in a human. And what’s good for the goose doesn’t always work for the gander: There are differences between boy parts and girl parts when it comes to what cancer responds to.

So, you want to join a clinical research study…

A lot goes into it. Generally, a Phase I trial tries to determine dosing that can be safely given (will it straight up kill me?). A Phase II trial evaluates whether a particular type of cancer responds to a new treatment and how well it can be tolerated (will it kill me slowly?). Phase III looks at whether or not the new treatment is more effective than the standard of care treatments.** (does it make me more miserable?) and Phase IV, monitors for longer term outcomes and side effects (do I live longer with an acceptable quality of life?).

Each trial has requirements for the kinds of patients it can accept. For example, what stage and type of cancer and how many treatments have failed to produce management of the disease, what lingering side effects such as neuropathy might be a cause for rejection, or any pre-existing conditions that might endanger the patient. Even though the patient signs forms acknowledging that they could die as a result of participating in the study (seriously), they really don’t want us to.

Some oncologists prefer to stick with a strictly conventional path of treatment. Others may seek opportunities to integrate research at some point when the standard of care fails. As Amber notes, people choose treatment at Carbone often because non-standard options may be available.

I am the unicorn of failure.

If there is a possible side effect, it finds me. I wish I was joking.

Diagnosed with a form of Stage 3C ovarian cancer after eight months of complaining to my nurse practitioners that, no, this goes beyond indigestion, I read all the research I could find: and blanched at the average five-year sentence for survival. Honestly, I’m too young to die.

My oncologist started with the standard of care: chemotherapy and surgery. When three “standard” (unpleasant) treatments (Paclitaxel, Docetaxel and Doxirubicin, all served in a fine hazardous chemical bag, with a Carboplatin chaser) and a two-week treatment with radiation failed after two years to manage the disease, we tried a newer, non-standard drug, Elahere, a monoclonal antibody that goes after a particular marker on my cancer cells. And after another six months, with neuropathy and some serious decline in vision that led to cataract surgery, it too stopped helping.

Like the bad guy in a horror flick, it always comes back.

Around the three-year mark, we talked clinical trials. One more treatment failure would have disqualified me from what appeared to be a promising study. Amber and her team argued that my fairly mild neuropathy shouldn’t exclude me, and after I passed a battery of tests looking at everything from heart function to liver and kidneys, I signed on to the opportunity of a Stage 2 immunotherapy drug I less than affectionately call “Lori” because its scientific name is just a little too long and its side effects even longer (lasting).

What have I signed up for?

Signing onto a clinical study is risky. We’re used to seeing ads for drugs, listing all kinds of possible side effects from liver failure to death, and we tend to accept that they were approved knowing that those were rare side effects.

Not necessarily. Ask any chemo patient. We often think of chemo side effects just as lost hair and maybe “a little nausea.” It can be so much worse. I mean, this stuff is considered hazardous. They get into biohazard gear to administer it directly into our veins.

But we accept that this is the cost of life. And when those side effects keep building over time, patients like me can feel our stamina eroding. Every clinical appointment, poor test result or diagnostic triggers PTSD. I feel myself spiraling. But, as one oncology nurse told me when I was at a particularly low point during chemo: attitude is everything. Plan a future. Think positive. You think too much about dying and it chases you.

We all choose to join a study for personal reasons. Maybe it’s for science, (Science!) a noble thought that our journey isn’t for nothing. Maybe it’s that overwhelming desire to just not die.

Or a little of both.

Cadillac care

Amber notes that when it comes to metastatic disease, “if we can cure it, fantastic. But the goal is to live longer with a quality of life.”

Amber worked for a decade in the Genitourinary (GU) Cancer Clinical Research unit before joining the GynOnc unit at UW. She says her investment in the patients and helping them navigate an often broken and always confusing healthcare system can sometimes leave her feeling a little like an Erin Brockovich of cancer, remaining present for patients who may not be health-care literate, and may need help accepting their disease.

“Sometimes it’s not so easy,” for her either, she says “because patients die” who she may have built a relationship with over the years of a study. But it has been her dream job because she knows she makes a difference.

One clinical trial Amber worked on in GU, for example, led to the successful FDA approval after about 15 years, of Apalutimide which treats prostate cancer. “A handful of trials have a good response,” she says, noting neoadjuvants, which are used early in treatment to shrink tumors before surgery, and immunosuppressants before treatment, tend to be the most successful in trials.

“We like to call standard of care in research Cadillac care: people who care whether you’re pooping 12 times a day and are responsive 24-7.”

So many needles!

A typical oncology day for me before joining the study involved a first stop at the lab to provide several vials of blood, and sometimes urine. After at least an hour for the results to come back, I would meet with an oncologist to determine if I was healthy enough to be treated, followed by an infusion that could take anywhere from two to four hours. Three weeks later, we’d do it all again. Every three months, a CT scan would measure any tumor growth or shrinkage.

A research trial was a whole different animal. Day 1 for me lasted 11 hours (the subsequent two treatments I received were a little shorter). I started out with the labs and IV placement (with additional blood for research) and my oncologist appointment included Amber and a Clinical Research Coordinator (CRC) at the clinic, followed by a drive to the hospital research center where staff would insert a second IV (to avoid taking blood from the same arm as the infusion). Before, during, and after the infusion, they took multiple vials of blood. I lost count somewhere north of 20. The infusion itself involved multiple check-ins to be sure it wasn’t killing me. Then, I had to wait several hours following the infusion to ensure no adverse effects.

Those came later.

Lori is a drug that showed promise in prostate cancer patients. And I can’t give a clearer example that gendered research doesn’t necessarily translate across the great divide. The study, which Carbone joined with several other research hospitals, aimed to sign on 60 patients. I was not the first to be dropped, nor the last. One patient has remained, the rest of us disqualified due to side effects considered “detrimental to welfare of the subjects,” ranging from colitis to heart issues, including one unfortunate woman who died.

Amber says the Lori study has been proposed to continue with a new cohort at a lower dose. She notes it’s not unusual for a significant number of trials to pull up stakes due to patient safety, or they don’t prove beneficial, or the study loses funding.

Show me the money

And funding has become an uncertainty under the current administration, which in its FY2026 budget proposal slashed funding, only to have Congress restore and increase it.

Funding can depend a bit on the particular cancer. Amber notes that GU, which treats prostate cancer patients, has five nurses and a CRC, while GynOnc has only one nurse and two CRCs, handling about six trials at a time at that staffing level. GU is better funded than GynOnc, especially because it’s less reliant on grants from the National Institutes of Health (NIH) and the National Cancer Institute (NCI), though it does receive significant federal funding from the Department of Defense (ahem).

When the administration announced “crippling cuts” to NCI, with a special vengeance for the promising work being done in mRNA therapies for cancer, Amber notes “we saw the headlines and had to go to work the next day uncertain. Do trials continue?” She says staff and patients endured about a month of uncertainty as the UW assured them everything was “fine.”

But if a trial closes, even temporarily, that can mean someone loses a job, a patient loses an opportunity, and if the patient is already in treatment, it risks continuation of that treatment. Delays in cancer treatment can be deadly for the patient. The Journal of the American Medical Association identified more than 380 medical trials targeted for funding cuts affecting some 74,000 patients who faced uncertainty in their treatment, or complete disruption.

While lawsuits restored some of the funding to cancer grants, some institutions still seek restoration of awarded funds or have found new grants made available at only a trickle.

It’s not a small amount of money

Besides the cost of medicines and the time of the staff who work with the patients, grants typically included funds at the institution’s federally recognized “indirect cost rate.” These funds cover things that can’t easily be quantified to just that one project and we would often think of as “overhead.” Among UW institutions this rate ranges from 31-57% depending on the type of grant.

While that sounds like a lot, it often pays for things like housekeeping and sanitation; security; scheduling staff and financial administrators; office equipment, software, and compliance programs; refrigeration and storage; lab costs; and all the medical supplies from IV tubing to needles to bandages.

In 2025, an executive order set a 15% indirect cost rate for federal grants, retroactively, which would have devastated research projects already in place. In January, a federal judge overturned that executive order but new proposed rules limit what projects can fund with their grants, including disallowing many things once covered as indirect costs, such as inter-institutional collaboration, publishing, and information sharing/training at conferences. The rule gives preference to those institutions with lower indirect cost rates, which may not be better suited to do the research. I don’t know about you, but I prefer my poison be administered by the best teams available, and best suited to handle things when something goes wrong.

Additional uncertainty in the proposed rule, which has garnered more than 500,000 comments from the science community, would say grants can be terminated at any point if the government’s priorities change. According to Aliasger K. Salem, a Professor of Pharmaceutical Sciences, at the University of Iowa, writing in The Conversation, such shifts in political priorities could mean students lose support, clinical trials are disrupted, and labs may be unable to maintain fragile equipment.

Salem notes, “A laboratory cannot easily recruit and hire staff, order custom materials or launch a study if funding decisions become unpredictable. Research institutions make many of these commitments months or years in advance. Specialized employees cannot always be reassigned immediately, and studies involving patients or animals carry ethical and regulatory responsibilities that continue even when funding is interrupted.”

The proposed FY 2027 budget again includes slashed funds for NIH research. While the numbers reflect the administration’s request, which may be adjusted as it moves through Congress, it clearly doesn’t account for need, or inflation.

As we navigate a landscape of science denial (I discuss this here) and the stripping of research funds, it can be hard for the cancer patient struggling to manage both life, and the complexities of not dying. The thing about all those billions in research dollars, is they’re going to projects that seek to improve lives, to, if not cure the cancer, manage it so people can live their fullest lives.

Says Amber, “Patient welfare is a passion. I don’t think enough people consider that aspect of it. They think weird things about it, guinea pigs, they forget about us people helping or trying to help.”

*Amber preferred her last name be withheld.
**Standard of care in cancer is based on the type, stage and response of a cancer to the usual treatment, which is often chemo, surgery, radiation, etc.

Cover photo Meg Turville-Heitz, Koshkonong Creek, Cambridge WI, 2019.

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