Understanding Pancreatic Cancer
- Singer Amber Woods was diagnosed with stage 4 pancreatic cancer at age 25 after months of symptoms like bloating, shortness of breath, and hemorrhoids were dismissed as acid reflux. Her diagnosis was later linked to her having Lynch syndrome, also called hereditary non-polyposis colorectal cancer (HNPCC), an inherited syndrome that increases a person’s risk of developing certain types of cancer.
- Woods is now on oral chemotherapy pills aimed at shrinking her tumors so she can become eligible for surgery.
- Pancreatic cancer is a type of cancer that forms in the pancreas. It can be challenging to treat because symptoms usually don’t present themselves until the cancer has spread or metastasized. Symptoms may include unexplained weight loss, back pain, jaundice, and pain in the abdomen.
- Early-stage pancreatic cancer tumors don’t appear on imaging scans, and people typically don’t experience symptoms until the disease has progressed. The pancreas’ location in the abdomen makes it harder to find tumors. Treatment options for pancreatic cancer may include surgery, radiation, chemotherapy, and targeted therapy.
- Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, explained that pancreatic cancer is difficult to treat because the cancer cells have a barrier called the stroma, which prevents cancer medications, including chemotherapy and radiation, from targeting and killing cancer cells.
- The SurvivorNet Clinical Trial Finder and websites called Clinicaltrials.gov and PubMed are great resources to use if you’re considering experimental treatment for a disease you or a loved one are battling. These databases can also help you find doctors who specialize in your disease.
Woods, a California resident whose real name is Amber Fisher, is currently fighting the disease with oral chemotherapy, hoping to shrink her tumors enough to qualify for surgery before undergoing additional treatment.
Read MoreWoods, who suffered from bloating, hemorrhoids, and being out of breath for approximately eight months before getting diagnosed, said, “The thing about pancreatic cancer, and the reason why they call it the silent killer, is because you don’t realize something’s wrong until it’s further down the line.
“‘I’m trying to help people catch their cancer earlier and be their own advocate.”
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Woods wound up in the emergency room just days before New Years Eve, when an ultrasound revealed lesions on her liver, which doctors suspected to be from parasites.
A followup CT scan then revealed she had stage 4 pancreatic cancer that spread to her liver. A biopsy was needed after to confirm what type of tumor she had.
She explained to People, “At first they thought I had a medium-aggressive pancreatic cancer. Later we found out it’s actually the less-aggressive one, but it’s further along.
“Right now the best course of action is chemo pills. I started taking them in late January. … Another hard part is just waiting. I haven’t yet seen results from the pills, because it takes about three or four months. Since the tumors were slow to grow, they’re gonna be slow to shrink.”
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Woods said she’ll learn next month if the pills are working, adding, “Hopefully once the tumors shrink, I will be eligible for surgery. Hopefully, it works. If it doesn’t, then we’ll go to a second line of treatment.
“There is a small chance that the cancer might just ‘disappear’ if it shrinks enough. But the more realistic route is, we shrink the tumors enough that I can get surgery, and in that surgery, they take out my pancreas, and my spleen, and then replace my liver.”
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She described it as a life-altering surgery, saying that removing her pancreas would eliminate the chance of recurrence.
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As for why she was diagnosed with cancer, Woods said her family on her biological father’s side, who she doesn’t have a relationship has Lynch Syndrome, which she tested positive for.
What is Lynch Syndrome? And Why Is it Important to Know About for People Fighting Cancer?
Lynch syndrome, which is also called hereditary non-polyposis colorectal cancer (HNPCC), is an inherited syndrome that increases a person’s risk of developing certain types of cancer including colorectal cancer. Most colorectal cancers in people with Lynch syndrome develop before a person reaches the age of 50, according to the American Cancer Society (ACS).
In an effort to help others, Woods told People, ” I want people to know that, if you feel like there’s something wrong with you, push your doctors, go to the emergency room, don’t stop until they really look into it.
“I had asked many times for them to do scans or something, and they just dismissed me.”
Inherited Genetic Disorders in Colon Cancer: Lynch Syndrome
According to the ACS, Lynch syndrome also leads to a high risk of developing endometrial cancer, along with cancers of the ovary, stomach, small intestine, pancreas, kidney, brain, ureters and bile duct.
The ACS explains that this syndrome can be caused by a mutation in any of several mismatch repair (MMR) genes, including MLH1, MSH2, MSH6, PMS1, and PMS2. “These genes are normally involved in repairing damaged DNA. When one of these genes isn’t working, cells can develop mistakes in their DNA, which might lead to other gene mutations and eventually cancer,” says the ACS.
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Understanding Acid Reflux & How It Might Raise Risk For Certain Cancers
Acid reflux is when stomach acid makes its way back up towards your mouth through your esophagus the tube that connects your mouth and stomach. It can cause heartburn, chest pain, regurgitation of food or liquid, and a feeling of a lump in your throat.
When these symptoms are frequent, you should see a doctor who can diagnose the condition and prescribe medication.
It’s important to note that approximately one in five Americans has acid reflux, a burning sensation in the throat could be a risk factor for certain cancers of the larynx (throat) and esophagus, according to a study published in the journal Cancer.
Dr. Theodoros Teknos, president and scientific director of UH Seidman Cancer Center in Cleveland, OH, previously told SurvivorNet, “This study doesn’t suggest that if you have GERD (gastroesophageal reflux disease) you need preventive screenings for laryngeal or esophageal cancer, but it does suggest that if you have GERD and develop symptoms of these cancers, such as hoarseness, a change in your voice, difficulty or pain swallowing, an unexplained ear ache, or breathing trouble, you should get it checked out because your GERD may be a risk factor for these types of cancers.”
The National Institute of Diabetes and Digestive and Kidney Disease defines Gastroesophageal reflux (GER) as what happens “when your stomach contents come back up into your esophagus.”
“Many people have GER once in a while, and GER often happens without causing symptoms. In some cases, GER may cause heartburn, also called acid indigestion,” the NIDDK states.
Here’s what the study found about the possible connection between reflux and certain cancers.
Researchers followed nearly 500,000 older adults ages 50 to 71 for about 15 years. Those who had acid reflux were up to two times more likely to develop certain cancers of the larynx and esophagus than people who didn’t have reflux. The study concluded that in the general population, about 17 percent of these cancers may be linked to reflux.
When you have acid reflux, stomach acid can make its way up into your esophagus. When your saliva, which has a high nitrate content, meets with these acidic gastric juices, it may cause a chemical reaction that creates substances, including nitrous acid and nitrous oxide, which could raise risk for cancer formation, Dr. Maie St. John, Chair of Head and Neck Surgery and Co-Director of the Head and Neck Cancer Program at UCLA Health, explains SurvivorNet in an earlier interview.
Dr. St. John urges not to panic as even among those who had reflux in the study, cancer rates were not especially high. And, GERD didn’t cause cancer. It just seems to be a risk factor.
Another important fact is that the researchers had to infer that certain people in the database had reflux. Here’s what that means. The researchers didn’t have confirmation of an official diagnosis of GERD. Instead, they had insurance claims that were highly suggestive of the condition but not necessarily a confirmed diagnosis. So, the number of reflux cases could be over-counted or undercounted.
This study only suggests that it may be reasonable to add GERD to the list of known risk factors for esophageal and laryngeal cancers.
“The take-home message is that if you have reflux, and it’s persistent, let your doctor know,” Dr. St. John explained. “Continuous GERD symptoms may lead to dysplasia or other changes. Based on your symptoms, you might be recommended to see an otolaryngologist or a GI specialist.”
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.
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.
Hope In Clinical Trials
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.”
Understanding Clinical Trials
Clinical trials are available for eligible cancer patients if other treatment options don’t seem to work. 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.”
Why I’d Choose a Clinical Trial For Myself
Your doctor may have spoken with you about possibly enrolling in a trial if you have advanced disease or if there’s a drug that’s currently considered investigational that may work better than the standard for you.
A lot of patients may feel uncomfortable about the thought of participating in a trial, but the trials can provide amazing opportunities for patients. For one thing, they give patients access to a bevy of new drugs that are currently being developed by pharmaceutical companies.
If participating in a clinical trial is something you think you may be interested in, the government has a list of trials that are currently ongoing. SurvivorNet also has a tool to help you find trials for your particular disease.
Your doctor may have spoken with you about possibly enrolling in a trial if you have advanced disease or if there’s a drug that’s currently considered investigational that may work better than the standard for you.
Contributing: SurvivorNet Staff
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