Olivia Williams, 56, Who Played Camilla Parker Bowles on ‘The Crown,’ Says Years Of Misdiagnoses Led To Late-Stage Pancreatic Cancer

During a recent interview with the The Times, Williams explained, “If someone had f***ing well diagnosed me in the four years I’d been saying I was ill, when they told me I was menopausal or had irritable bowel syndrome or [was] crazy … I used that word advisedly because one doctor referred me for a psychiatric assessment.

“Then one operation possibly could have cleared the whole thing and I could describe myself as cancer-free, which I cannot now ever be.”

It wasn’t until 2018, when Williams underwent a CT scan that a tumor was located in her pancreas. She was diagnosed with a rare type of pancreatic cancer called vasoactive intestinal polypeptide (VIP) carcinoma.

As per research published in the World Journal of Gastrointestinal Oncology, a vasoactive intestinal peptide-secreting tumor is a “rare functional neuroendocrine tumor that typically arises from pancreatic islet cells.”

People diagnosed with VIP carcinoma may experience symptoms such as hypokalemia (low potassium levels), metabolic acidosis (build-up of too many acids in the blood), and watery diarrhea, which can mimic an IBS symptom.

Williams underwent a surgical procedure called a pancreatectomy (removal of all or part of the pancreas) and a splenectomy (removal of the spleen) for treatment. Following surgery, she started taking pancreatic enzyme replacement therapy (PERT), the Pancreatic Cancer UK says.

The mother of two, also known for acting in “The Ghost Writer,” had cancerous cells “zapped by microwave ablation” back in 2021, but it didn’t kill all of the malignant cells.

She told The Times “Since then, the metastases have kept popping up. So we’ve been playing whack-a-mole every time they appear.”

As for how she’s working to prevent the cancer cells from growing with treatment and routine checkups and scans, Williams added, “I go in like a puppy with this optimistic, bright face and then they give me bad news and it’s like, oh my God, I fell for it again.

“They’ve found new metastases pretty well either just before Christmas or in the middle of a summer holiday. Then, for three years in a row, they started appearing too close to major blood vessels to zap. So there was a period when we were just sitting and watching them grow, which is a horrible feeling.”

Despite Williams never being able to fully beat the disease, she remains optimistic and we admire her willingness to spread awareness and help others get screened to detect cancer at early stages.

Williams explained, “The average time from diagnosis to death [for pancreatic cancer] is three months … and that figure has not improved in 50 years,.

“It takes an average person with my cancer 11 visits to the GP to be diagnosed. For me it was probably about 21 times.”

She continued, “Because it’s so quick and so shocking, people tend to liken losing someone to this cancer to losing them in a car crash. What could change that is early detection with a test that could be as simple as breathing into a bag at your GP. We’re incredibly close, we just need to get it over the line.

“It’s too late for me, and for all these people who are running in the marathon who’ve lost a parent or a friend, who could have been saved by a pancreatectomy [removal of the pancreas] if the cancer had been found before it spread. This is where I get emotional but I’m not looking for sympathy, I’m looking for a cheap, early test.”

In an earlier interview with Vogue Magazine, Williams said, “It had taken more than ten doctors, across three continents, four years to track it down, but finally, I had a diagnosis.

“I don’t blame the doctors for not spotting the cancer earlier. No right-minded GP orders a CT scan for an actress allergic to Champagne.”

Coping With a Pancreatic Cancer Diagnosis

Pancreatic cancer is a type of cancer that forms in the pancreas. It is more challenging to treat because symptoms usually don’t present themselves until the cancer has spread or metastasized. Symptoms may include weight gain, back pain, and jaundice.

Pancreatic cancer often comes with a slim chance of survival due to difficulty detecting it when it is more treatable.

Although pancreatic cancer survival rates have been improving, it’s still considered to be largely incurable. An exception to this is if the tumor is still small enough and localized enough to be operated on.

WATCH: Pancreatic cancer and early detection.

In a previous interview with SurvivorNet, Dr. Anirban Maitra, the co-leader of the Pancreatic Cancer Moon Shot at MD Anderson Cancer Center, explains what he typically sees when patients develop this disease.

“Because the pancreas is inside the abdomen often doesn’t have symptoms that would tell you that something is wrong with your pancreas,” he says.

“By the time individuals walk into the clinic with symptoms like jaundice, weight loss, back pain or diabetes, it’s often very late in the stage of the disease.”

Meanwhile, parents, siblings and children of someone with pancreatic cancer are considered high risk for developing the disease because they are first-degree relatives of the individual. PGVs (pathogenic germline variants) are changes in reproductive cells (sperm or egg) that become part of the DNA in the cells of the offspring. Germline variants are passed from parents to their children, and are associated with increased risks of several cancer types, including pancreatic, ovarian and breast cancers. Germline mutations in ATM, BRCA1, BRCA2, CKDN2A, PALB2, PRSS1, STK11 and TP53 are associated with increased risk of pancreatic cancer.

Jessica Everett, a genetic counselor at NYU Langone’s Perlmutter Cancer Center, encourages people in this category to look into possible screening options.

“If you’re concerned about pancreatic cancer in your family, start by talking to a genetic counselor to learn more about your risk and what options you have,” Everett told SurvivorNet in an earlier interview.

RELATED: For Pancreatic Cancer Patients Like Alex Trebek, New Research Suggests Resistance to Chemotherapy Can Be Reversed & Survival Rates Improved

Additionally, note that up to ten percent of pancreatic cancer cases are caused by inherited genetic syndromes. So, if two or more members of your family have had pancreatic cancer, or if you have pancreatic cysts, it’s worth asking your doctor to check for pancreatic cancer since you’re at high risk.

The National Cancer Institute identifies pancreatic cancer symptoms to include:

• Dark urine
• Pain in the abdomen
• Unexplained weight loss
• Light-colored stools
• Loss of appetite and fatigue

Treatment options for pancreatic cancer may include surgery, radiation, chemotherapy, and targeted therapy.

Progress in Pancreatic Cancer

Progress has been made over the last few years in the world of pancreatic cancer treatments. One clinical trial recently found that the drug Onivyde, in combination with chemotherapy in the so-called Nalirifox regimen, helped patients live longer compared with chemotherapy in previously untreated patients with metastatic pancreatic ductal adenocarcinoma (mPDAC), according to Ipsen, the pharmaceutical company that bought the drug.

“The prognosis for people diagnosed with pancreatic cancer is extremely poor and we plan to submit these new findings to the regulatory authority as, if approved, we believe this regimen could offer up an important new treatment option for people living with an aggressive and hard-to-treat cancer,” Howard Mayer, Executive Vice President and Head of Research and Development for Ipsen, previously said. “We thank the patients who participated in the study, their families and their healthcare teams.”

The drug is currently approved in the U.S., Europe, and Asia in combination with fluorouracil and leucovorin as a treatment for mPDAC after disease progression and following gemcitabine-based therapy.

Another example of progress being made comes in the form of immunotherapy, a type of cancer treatment that uses your own immune system to fight cancer.

“Up until now, immunotherapy hasn’t had a big role,” Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, previously told SurvivorNet.

Dr. Allyson Ocean explains why pancreatic cancer is so hard to treat.

A clinical trial led by researchers at the Perelman School of Medicine at the University of Pennsylvania, and sponsored by the Parker Institute for Cancer Immunotherapy, found “combination of chemotherapy with an immunotherapy meant to unleash the anticancer capacity of the immune system was effective against one of the hardest targets in cancer care, pancreatic cancer,” said Penn Medicine.

“The researchers found that in 34 patients with advanced pancreatic cancer randomized to receive the immunotherapy nivolumab with two chemotherapy drugs, nab-paclitaxel and gemcitabine, had a one-year survival rate of 57.7 percent, significantly greater than the historical average of 35 percent with chemotherapy alone,” the institution said.

Dr. Benjamin Musher, the director of medical oncology at the Dan L Duncan Comprehensive Cancer at Baylor St. Luke’s Medical Center, recently said there were currently multiple “home-grown clinical trials testing novel immunotherapies in all stages of pancreatic cancer studies underway at Baylor St. Luke’s.” But only about 5 percent of patients with pancreatic cancer participate in such studies.

“We know that we are not going to improve outcomes without more patients enrolling,” Musher said.

In addition, there are immunotherapy clinical trial innovations being made to allow for multiple immunotherapeutic approaches to be tested and compared to one or several standard-of-care options within trials. In other words, “investigational treatments can be added or dropped from the trial over time, depending on preclinical and clinical evidence.”

“We’re encouraged by the trend toward more innovative clinical trial designs to improve the drug development process and ultimately lead to better patient outcomes,” PanCAN Chief Science Officer Lynn Matrisian said in a recent article from the Pancreatic Cancer Action Network.

Clinical trials, in general, are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.

Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, previously told SurvivorNet that clinical trials can play an important role for some patients’ treatment, but they also serve a larger purpose.

“Clinical trials hopefully can benefit you, but it’s also providing very, very vital information to the whole scientific community about the effectiveness of these treatments,” Dr. Karlan said. “We need everyone to be partners with us if we’re ever going to truly cure cancer or prevent people from having to die from cancer.”

That being said, there is no guarantee you’ll receive more effective treatment than the standard of care, and clinical trials certainly aren’t right for everyone. You should always talk with your doctor(s) before getting involved in one. Some risks to consider are:

• The risk of harm and/or side effects due to experimental treatments
• Researchers may be unaware of some potential side effects for experimental treatments
• The treatment may not work for you, even if it has worked for others

But if you’ve already decided that a clinical trial is right for you or you’re just beginning to explore your treatment options, you should know that SurvivorNet has a tool for you. The SurvivorNet Clinical Trial Finder: an A.I. driven tool for patients to find clinical trial options for treatment.

The tool is built on top of clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world, and gives access to more than 100,000+ individual clinical trials, updated daily.

“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said.

“Even one percent more people successfully enrolled in clinical trials can change the world.”

Following Your Gut, the Value of a Second Opinion

It’ unfortunate Williams was diagnosed with stage four cancer, but we admire her for pushing for answers when her symptoms persisted and sharing her story to help others get the correct diagnosis.

When you see a doctor for a problem, don’t hesitate to ensure that your questions are fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.

“It’s important for you to actually educate yourself and be your own health care advocate,” colorectal surgeon Dr. Zuri Murrell previously told SurvivorNet.

“You should lead each doctor’s appointment with a plan,” Dr. Murrell adds.

Stay Positive, It Matters

In addition to ensuring that you and your doctor agree about your diagnosis and potential treatment, seeking other opinions is equally important.

Doctors do not always agree about whether your symptoms merit further testing and whether specific treatment methods work best for you.

Dr. Steven Rosenberg, chief of surgery at the National Cancer Institute and one of America’s most renowned cancer doctors, agrees.

“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care because finding a doctor who is up to the latest information is important,” Rosenberg previously told SurvivorNet.

“It’s always important to get other opinions so that you can make the best decisions for yourself in consultation with your care providers,” Dr. Rosenberg continued.

Also, asking your doctor additional questions helps ease the initial shock and anxiety associated with a new diagnosis.

“I think it’s really important for them to be able to hear it multiple times and take notes,” said Dr. Heather Yeo, a colorectal surgeon at Weill Cornell Medicine.

“I support second opinions. I actually think it’s really important. I mean, if you think about it in life, how do you choose someone to cut your hair? You get an opinion, right? You usually don’t just go in and sit down with the first person you see on the street and say, cut my hair. You ask around,” Dr. Yeo added.

Dr. Yeo also suggests turning to family and friends or finding a support group to help you begin your cancer journey.

The Importance of Second Opinions for Ovarian Cancer Diagnosis and Treatment

Reasons to Consider a Second Opinion

Here are some possible reasons to get a second opinion.

• To see a doctor who has more experience treating your type of cancer
• You have a rare type of cancer
• There are several ways to treat your cancer
• You feel like your doctor isn’t listening to you or isn’t giving you sound advice.
• You have trouble understanding your doctor.
• You don’t like the treatment your doctor recommends or are worried about its possible side effects.
• Your insurance company wants you to get another medical opinion
• Your cancer isn’t improving on your current treatment

Advocating for Yourself, or a Loved One

Just as being your own advocate is important when it comes to cancer care, it is just as important for parents to advocate for a loved one, or their child’s health. And by doing so, you can make sure that your doctor sees you or someone your helping as an individual in the diagnosis and treatment process.

“One of the biggest things that I did from the very beginning was asking the right questions,” Alex Echols, a patient advocate and lymphoma survivor, tells SurvivorNet. “It’s our lives on the line.”

Advocating for Yourself While Navigating the Medical World

He credits these questions with making sure that doctors took him seriously and viewed him as a partner in his treatment

Avoiding Provider Bias – Is Your Doctor Understanding You?

While your doctor has undergone years of training and practice, they are still human, and may come with their own set of biases that can impact how they treat patients.

To combat these biases and really get the most out of your interactions with your doctor, you should provide her or him with plenty of information about your life and ask plenty of questions when things aren’t clear. To better understand how you should approach conversations with your doctor, we previously spoke with Dr. Dana Chase, gynecologic oncologist at Arizona Oncology.

According to Dr. Chase, physicians, like many of us, can be a bit biased when seeing patients. She made it clear that these biases are rarely sinister, but rather unconscious and more subtle.

She explained, “We have certain beliefs that we don’t know about. We might look, for example, at an older woman, and just by the way she looks we might make certain assumptions, and we might not even know that we’re making these assumptions.”

Let’s Talk About Provider Bias

Clearing up misconceptions is important, but so is understanding what your doctor is telling you, Dr. Chase noted. Overall, she advises women to speak up and ask questions when they don’t understand something.

“It’s never a bad thing to ask for something to be repeated, or to ask the doctors to explain it in different terms.”

So next time you go to your physician, speak up if you need clarity, so your doctor can understand you and you can understand them.

Questions for Your Doctor

If you find yourself considering seeking a second or third medical opinion, here are some questions to kickstart the conversation with your doctor:

• Is there any other testing available for the type of cancer I have?
• Are there any other treatment options available for my type of cancer?
• Why or why do you not recommend those other options?
• I want to seek a second opinion on my diagnosis and treatment options. Is there another doctor or facility you recommend?
• Do you want the second opinion to be sent to you?
• Can I have a copy of all my records to share with this second physician?

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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