Being Proactive, the Ultimate Survival Tool
- Bestselling author and poker player Jane Stanton Hitchcock, 77, has won her biggest hand yet, beating an extremely rare pancreatic cancer that mostly occurs in children. In a personal essay, the no-holds-barred personality, who is also a screenwriter and playwright, described how she achieved remission status thanks to multiple opinions and being vocal about what she was going through after at first rolling the dice with the disease.
- After having success with her first surgery, Jane’s cancer unfortunately came back, or recurred, to her liver, which made it metastatic, meaning that it had spread. Because of her age, feeling that she had already lived a full life, and the fact that she wanted to continue living as full of a life as possible, she declined chemotherapy. However, by advocating for health and seeking other opinions, she was able to try a specialized treatment, and it worked.
- While SurvivorNet stands by primary therapy, the typical protocol used to treat a specific disease, we also do respect an individual’s wishes for their life and health journey, and at Jane’s age, that was her choice not to have chemotherapy treatment after learning of her advanced stage disease. We commend her for catching her cancer early, being vocal, following through with other opinions and trying another method that ultimately helped her survival.
- Though Jane’s cancer is rare, she did the research and attempted to find a clinical trial. Discuss the potential risks and benefits with your doctor to determine if a specific clinical trial is right for you. In the meantime, here is SurvivorNet’s Clinical Trial Finder tool to assist you in your own research.
In a personal essay for Vogue.com, the no-holds-barred New Yorker, also a screenwriter and playwright, described how she achieved remission status thanks to multiple opinions and being vocal about what she was going through after at first rolling the dice with the disease.
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“I had no symptoms,” the mystery novelist recalled. “But just to be cautious he sent me for a routine renal ultrasound.”
Jane’s Pancreatic Cancer Diagnosis
When the doctor came in, he told Jane that her kidneys were fine, “However, there’s a very large mass floating over your other organs. We have no idea what it is.”
She underwent more scans at The Johns Hopkins Hospital in Baltimore, Maryland. Jane was then told she had pancreatic cancer. “The tumor was large and had to be taken out immediately.”
After a nine-hour surgery, her medical team removing the six-inch tumor (that she named Moby Dick), spleen and gallbladder, Jane’s “brilliant” surgeon shared that she was cancer-free.
“I returned home feeling like I’d dodged not just a bullet but a cannon ball.”
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And with pancreatoblastoma, though rare, it has a better prognosis than pancreatic cancer, and less likely to recur, or come back, and metastasize, or spread.
Unfortunately, Jane’s, however, did. Her cancer had metastasized to her liver.
Having lived an admitted “fascinating, privileged life,” Jane decided she didn’t want to do chemo and instead, wanted to continue living her life to the fullest and leave it up to fate. After all, she had a big poker tournament to attend.
“As the weeks passed, I told everyone who was interested (and many who were not) that I had metastatic pancreatic cancer … For one thing I wanted people to understand that cancer is not a shameful or shadowy disease. And for another, quite selfishly, it helped to bolster my decision not to have chemotherapy while I still felt well.”
One day soon after, Jane caught up with one of her friends, who was not going to let her close pal be so cavalier about her life while living with this disease. “Honey, I love you. But, trust me, I’m a hopeless case,” Jane recalled saying.
“I know a doctor who only takes hopeless cases,” her friend shot back.
A couple opinions later, a world-renowned doctor, Dr. Tomoaki Kato, (who, along with his team, had successfully performed a “breakthrough” operation to separate conjoined twins and graced the cover of The New York Times in 2021), pointed Jane in the direction of Dr. David Sperling at Columbia Presbyterian.
Dr. Sperling used a treatment called radioembolization, which is when the “radioactive isotope Y-90 in the form of tiny resin beads is injected into the ‘mapped’ blood supplies of the tumor. Y-90 aims to kill them by cutting off their blood supply.” Then, the beads give off small amounts of radiation to the tumor site for several days.
It worked.
“Cancer can paralyze you with fear — both the fear there is no hope and the fear of talking about it. My advice is to broadcast your disease. Tell anyone who will listen what kind of cancer you have,” the Bluff author urged. “Do research. Knock on every medical door. Don’t take ‘only this way’ for an answer.”
In June, Jane played in the World Series of Poker in Vegas. Although she had “no luck with the cards,” she said the “real luck being there at all. Just being alive is lucky!”
What Is Pancreatoblastoma?
According to an article in the World Journal of Gastroenterology, published on NIH, a pancreatoblastoma is “exceptionally rare,” and as Jane explained, mostly occurring in children. “To date, only 74 adult pancreatoblastomas” have been recorded.
“This rare malignant tumor of the pancreas” mimics “other solid cellular neoplasms of the pancreas, which may pose diagnostic difficulties.” And “because of its rarity, little is known about its clinical and pathologic features.”
“There are no symptoms unique to pancreatoblastomas,” the journal says, with the “most common presenting symptom is abdominal pain.”
Pancreatic Cancer and Its Ability to Go Unnoticed
Pancreatic cancer begins in the pancreas and is known as the “silent disease.”
Symptoms of the disease rarely show up until it has advanced and metastasized (spread) to other parts of the body.
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.
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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
“Because the pancreas is inside the abdomen often doesn’t have symptoms that would tell you that something is wrong with your pancreas,” Dr. Anirban Maitra, the co-leader of the Pancreatic Cancer Moon Shot at MD Anderson Cancer Center, previously told SurvivorNet.
“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.”
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Pancreatic cancer treatment options vary based on the specifics of each case. In general, the following types of treatment may be used:
- Surgery
- Radiation therapy
- Chemotherapy
- Chemoradiation therapy
- Targeted therapy
When it comes to stage four, or metastatic, pancreatic cancer, options are more limited. According to the National Cancer Institute, treatment of metastatic pancreatic cancer or pancreatic cancer that has recurred (returned) may include:
- Chemotherapy with or without targeted therapy
- Clinical trials of new anticancer agents with or without chemotherapy
Clinical Trials
Though Jane wasn’t able to find a clinical trial for her rare cancer, she pursued the research.
“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 2022 article from the Pancreatic Cancer Action Network.
A clinical trial can be defined as a research study that compares the most effective known treatment for a specific type or stage of a disease with a new approach.
Participating in one does not guarantee you will get the most effective treatment and they are certainly not for everyone, but it does give you the chance to potentially access new, cutting-edge treatments while advancing science.
Before getting involved in a clinical trial, talk with your doctor(s) and consider the following general risks of enrolling:
- 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
“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.”
Discuss the potential risks and benefits with your doctor to determine if a specific clinical trial is right for you. In the meantime, here is SurvivorNet’s Clinical Trial Finder tool to assist you in your research.
Advocating for Your Health
While SurvivorNet stands by standard science and typical protocol first for treating a specific disease, we also do respect an individual’s wishes for their life and health journey, and at Jane’s age, that was her choice not to have chemotherapy treatment after learning of her advanced stage disease. We commend her for staying up to date with her check-ups, being vocal, following through with other opinions (from a friend and highly known doctors), and trying another method that ultimately helped her survival.
And she can change her mind at any time about chemotherapy, which is comforting.
Cancer research legend urges patients to get multiple opinions
The medical field is changing rapidly, and there are more and more promising trials and treatments out there than ever before. So never give up hope — whether you have to luck of a poker player or not.
It’s always worth investing time and energy — and multiple opinions — on yourself. As Jane says, be vocal about your health. You never know what it can lead to.
Contributing by SurvivorNet staff.
Learn more about SurvivorNet's rigorous medical review process.
