Does Pre-Cancer Mean I’m Going to Get Cancer?

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This blog was originally published by Cancer Treatments Centers of America on December 20, 2018, here.

A male and female physician evaluating x-rays for a cancer diagnosis
Every year, thousands of people are diagnosed with pre-cancerous conditions, news that may induce fear and panic in those receiving it. While pre-cancer that goes unchecked may ultimately become cancerous, it’s not a guarantee and, in many cases, not even likely.

Every year, thousands of people are diagnosed with pre-cancerous conditions, news that may induce fear and panic in those receiving it. While pre-cancer that goes unchecked may ultimately become cancerous, it’s not a guarantee and, in many cases, not even likely. “ No one dies of pre-cancer,” says Justin Chura, MD, Chief of Surgery & Director of Gynecologic Oncology and Robotic Surgery at our Philadelphia hospital. “It’s a very treatable condition, if it even needs treatment at all. A pathology report may indicate carcinoma in situ. When patients, and even some clinicians, see the word carcinoma, they get misled into thinking they have cancer. Pre-cancer means there are cells that have grown abnormally, causing their size, shape or appearance to look different than normal cells.”

Whether abnormal cells become cancerous is, in many cases, an uncertainty. Some of the variables are known, others are not. So what exactly does it mean to be told you have a pre-cancerous condition? Does it increase the risk of getting cancer? Are there any prophylactic (preventative) measures that can be taken to reduce the likelihood that a cancer diagnosis is in your future?

According to Elizabeth Min Hui Kim, MD, MPH, FACS, Director of the CTCA Breast Cancer Institute, pre-cancer is becoming an outdated term in breast oncology as well as other specialties,  because the condition is more complex than a blanket term can describe. “We’re understanding these precancerous cells have certain genes, and we’re using technology to understand how they differ from each other and have different risks based on their biology,” she explains.

Citing the current body of literature—which includes a 1985 study that re-evaluated 10,366 breast biopsies performed on women at three Nashville hospitals, a 2007 Mayo cohort study, a 2012 study that evaluated breast cancer risk based on atypia type, a 2012 study on the management of high-risk breast lesions and a 2016 study on which Dr. Kim was a lead author—Dr. Kim says doctors can classify the condition into one of three categories: non-proliferative disease, proliferative disease without atypia and proliferative disease with atypia.

How to approach a non-proliferative disease diagnosis depends on the person’s cumulative risk of developing breast cancer, which is a risk assessment based on a variety of factors, including but not limited to family history and breast density as well as personal risk factors that may be modifiable, like body mass index (BMI) and tobacco or estrogen use. If the cumulative risk is determined to be greater than 20 percent, Dr. Kim says enhanced screenings (having both a mammogram and a breast MRI, for example) may be recommended.

Diagnoses in the proliferative disease category indicate that abnormal cells are growing faster than normal cells, but not as fast as cancer cells. “There is abnormal growth or size of the cells, or the cells might be larger than normal,” Dr. Kim explains. An example of a proliferative disease would be an intraductal papilloma of the breast, which is like a polyp. Surgical removal of the area may be advised, depending on the patient.

Proliferative disease with atypia indicates high-risk lesions (abnormal cells) that are growing faster than normal. Depending on the cumulative risk, a form of medical treatment called anti-estrogen therapy or surgery may be recommended.

Modern medicine allows many “pre-cancerous conditions” to be found early. A pap test detects cervical dysplasia (abnormal cells in the cervix), sometimes referred to as pre-cancer. Low-grade dysplasia is typically not treated unless it persists for a couple of years, Dr. Chura says, while high-grade dysplasia would require a biopsy. The biopsy results would dictate the next steps. A colonoscopy detects colon polyps, and skin cancer screenings by a dermatologist are credited with identifying for removal many skin cancers that would have metastasized (spread).

“If you’re diagnosed with some type of dysplasia, whether in the esophagus, colon, cervix, etc., it doesn’t mean you will develop cancer. It means you will need some type of surveillance and treatment plan to manage it,” Dr. Chura says.

The takeaway is that a pre-cancerous condition does not mean you have cancer. It simply means you have an increased risk of cancer, which should serve as a reminder to stay current with medical visits and screening tests and communicate concerns or changes to your doctor.

“These are easily solvable problems and can be addressed with treatments that are a lot less invasive and have a lot more options than if the patient had a malignant disease,” says Dr. Kim. “It’s not cancer until proven otherwise. And if it is, they’ve caught it really, really early.”

Identifying Biomarkers Gives Doctors Known Targets to Treat Many Cancers

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This blog was originally published by Cancer Treatments Centers of America on August 21, 2019, here.

Biomarkers
Doctors are increasingly relying on biomarkers, which help determine a patient’s overall health and/or the presence of disease. Learn what biomarkers are and why they are increasingly important in cancer care.

When faced with opposition, it’s beneficial to learn as much as possible about the opponent. A pitcher reads a scouting report before facing a lineup. An army consults intelligence before engaging the enemy in battle.

The same principles apply to the treatment of some cancers. When treating a tumor, it’s important for a doctor to know as much as possible about that cancer—specifically, what is driving the tumor’s growth.

To get the inside information on a tumor, doctors are increasingly relying on biomarkers, short for biological markers, measurable signs or substances in the body that may indicate a patient’s overall health and/or the presence or progression of disease.

The discovery of biomarkers in cancer drastically changed the course of cancer treatment. For decades, many cancers were treated similarly, with surgery, radiation therapy or chemotherapy. Identifying biomarkers in cancer cells has led to the development of new precision medicine drugs, such as targeted therapy and immunotherapy, designed to target specific features in cancer cells, potentially reducing the damage to healthy cells. “The routine use of a variety of biomarkers has substantially changed the way in which cancer medicine is practiced,” says Maurie Markman, MD, President of Medicine & Science at Cancer Treatment Centers of America® (CTCA), “from providing more accurate prognostic information to assisting in the prediction of specific therapeutic strategies that are more likely to result in a favorable outcome for an individual patient.”

What are biomarkers?

A biomarker is any measurable indicator of a person’s health. Blood pressure is a biomarker, as are body temperature, blood sugar and cholesterol measurements. In cancer, biomarkers also include proteins, hormones, gene aberrations, such as mutations or rearranged genes, and other molecules found in or on cancer cells. Cancer biomarkers may be found in routine blood, urine or stool tests. Others may require a biopsy and/or advanced genomic testing to uncover. “Genomics has made it so much easier to find gene mutations,” says Arturo Loaiza-Bonilla, MD, MSEd, FACP, Vice Chair for the CTCA® Department of Medical Oncology. “Now we may be able to target a mutation and potentially get the cancer to stop growing.”

Biomarkers play multiple roles in the treatment of diseases, such as cancer, including:

Diagnostic: Helping confirm the presence of disease, sometimes before symptoms develop

Prognostic: Helping forecast the progression and aggressiveness of the disease and the risk of recurrence

Predictive: Helping doctors identify how patients may respond to certain drugs

Biomarkers may play any or all these roles and more. Some biomarkers may be used to assess a patient’s risk of developing disease, the effectiveness of a treatment or whether a treatment is safe or toxic.

Common cancer biomarkers include:

  • BRCA1 and BRCA2 genes: Mutations in these genes may increase a woman’s risk of breast and ovarian cancer. In men, it may increase the risk of prostate cancer.
  • PSA: Prostate specific antigen may indicate prostate cancer. This biomarker may be used not just to diagnose the disease, but to measure its progression and how the treatment is performing.
  • HER2: Human epidermal growth factor receptor 2 is found in many cancers, especially breast cancer. The targeted therapy drug trastuzumab and other similar monoclonal antibodies may be a treatment option for patients with HER2-positive cancers.
  • BCR-ABL: This gene, known as the Philadelphia chromosome, is found in patients with chronic myelogenous leukemia. Presence of the gene may indicate the patient may respond well to treatment with a tyrosine kinase inhibitor drug such as imatinib.
  • PD-L1: Programmed death ligand 1 is the companion receptor to PD-1. It may indicate a cancer’s ability to evade the immune system. Immunotherapy drugs called checkpoint inhibitors may be an option to treat cancers high in PD-L1.
  • CA-125: High levels of cancer antigen-125 are found in many cancers as well as other diseases. Treatment options for cancers with CA-125 vary depending on where the cancer originated.
  • MSI-H: Microsatellite instability-high is a mutation in the DNA of cells found in many cancers, especially colorectal cancer. Checkpoint inhibitor drugs have been approved for cancers with MSI-H.

Difficult targets

Biomarkers don’t always tell the full story. Discovery of a biomarker that might indicate an increased cancer risk doesn’t mean a patient will get cancer. Not all cancers have identifiable biomarkers. And identifying a driving biomarker in a cancer does not necessarily lead to a treatment option. Some biomarkers for cancer have no corresponding targeted therapy or immunotherapy drug. For example:

  • TP53: Tumor protein 53 is a tumor suppressor gene designed to help stop cancer cells from growing. TP53 mutations are the most common found in cancer cells and may be found in most types of cancer.
  • RAS: About 30 percent of all cancers, including 95 percent of all pancreatic cancers, have known mutations in the RAS family of genes that control cell death and growth.

No targeted therapy drugs have been approved specifically to treat cancers with these mutations. “A number of recognized critical signaling pathways in cancer development, progression and resistance remain very difficult to ‘target’ to influence clinical outcomes,” Dr. Markman says. “The ability to successfully and safely target either or both of these pathways has the potential to be an important advancement in cancer management.”

Many cancers, especially solid tumors, have multiple biomarkers, any one of which may be able to drive a cancer’s growth. Target one biomarker, and another may take over as the driving mutation. And not all the same biomarkers are found in every cancer cell. “As cancer cells grow, they start to develop new abnormalities, mistakes made while the cells are multiplying,” Dr. Bonilla says. These new mutations may make the cancer more resistant to treatment.

Also, doctors need to take steps to prevent the patient from being harmed by the process of targeting a specific biomarker. For instance, patients on a checkpoint inhibitor that targets cancers high in PD-L1 may develop symptoms of autoimmune diseases, such as colitis. “The goal is to find the specific biomarker that every single cell expresses without compromising the normal cells,” Dr. Bonilla says, “because once you tell the immune system to kill a population of cells, it is going to kill all those cells, whether they are good or bad. But if you are able to find the specific biomarker that is the hallmark of this disease and needs to be eliminated, then it’s much easier to find a therapy.”

The discovery of biomarkers has led to game-changing developments in the cancer treatment. Women who learn they have BRCA mutations are now empowered to make potentially life-saving decisions to prevent breast and ovarian cancer. Men with slow-developing prostate cancer can now actively monitor their disease, in part, because their PSA levels can be measured. And research is ongoing to find new biomarkers to help in the treatment of other cancers and diseases, such as diabetes, Parkinson’s disease and heart disease.

“Biomarkers offer an opportunity to apply genomics to population health and see what diseases or conditions people may be predisposed to,” says Pamela Crilley, DO, Chair of the CTCA Department of Medical Oncology. “Am I going to get diabetes? Am I going to get elevated cholesterol? Is there anything I can do about it? Look at hereditary breast and ovarian cancers. The science has led to being able to prevent disease in patients with BRCA1 and BRCA2 mutations. Now we may be able to significantly reduce your risk of disease.”

At Home Genetic Tests Offer Limited Information

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This blog was originally published by Caner Today by Sharon Tregaskis here.

At-home genetic tests offer limited information on cancer risk.

KNOWLEDGE IS POWER ​wit​h regards to lowering cancer risk. But if you’re looking for clues to the hereditary hazards lurking in your genome, testing at home can be risky business.

Dozens of companies sell online genetic tests to consumers interested in exploring their ancestry or health risks. No prescription is needed. The consumer simply needs to send in a saliva sample. The U.S. Food and Drug Administration (FDA) cautions consumers that the results they receive from these direct-to-consumer tests are not intended to be the primary basis for medical decision-making. But consumers may not be aware of how limited the test findings actually are.

Questions to Ask

Find out the following before you purchase an at-home genetic test.

Who will have access to your data?
Learn whether the testing company can sell your data to a third party. Can you opt out of having your data sold?

Will your privacy be protected?
Know the company’s policies. Consider using a pseudonym and a false date of birth to reduce your risk of exposure.

What if there’s bad news?
Identify a genetic counselor you can talk to about cancer risk test results. The National Society of Genetic Counselors can help you find one in your area.​

In January 2019, the company 23andMe became the first permitted by the FDA t​o offer an at-home genetic test to assess colorectal cancer risk. The test looks for two genetic mutations associated with a rare, hereditary colorectal cancer syndrome. It does not screen for Lynch syndrome, the inherited condition responsible for most cases of hereditary colorectal cancer. (Lynch syndrome also increases risk for other types of cancer.)

The FDA previously approved the company’s test for three inherited BRCA mutations associated with an increased risk for breast and ovarian cancer. However, the BRCA genetic variations the test looks for are not the most common. A study presented in April 2019 at the American College of Medical Genetics and Genomics annual meeting found the 23andMe test missed close to 90% of BRCA mutation carriers. The study was conducted by Invitae, a company that sells genetic tests for inherited cancers that can only be ordered by a physician.

“Many of these [direct-to-consumer tests] are in no way equivalent to a medical-grade test,” says genetic counselor Lisa Madlensky, director of the Family Cancer Genetics Program at Moores Cancer Center at UC San Diego Health in California.

Kayla Sheets, a genetic counselor and chair of the Massachusetts Board of Registration of Genetic Counselors, took a direct-to-consumer genetic test so she could experience the process firsthand. She found that the online resources for interpreting her results fell far short of the tailored, comprehensive information genetic counselors like her offer. “There are different levels of DNA testing available,” says Sheets. “Anyone concerned about cancer risk needs something ordered by a genetic counselor who has a really good understanding of what that test can and can’t do for them.” ​​

June 21, 2019

Finding Support in Unlikely Places

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This blog was originally published by Cancer Today by Patricia Anne Ward here.

WHEN I WAS DIAGNOSED ​with stage IC ovarian cancer in February 2018, my life came to a screeching halt. It was the first life-threatening health issue I’d ever faced in my 70 years of life. Despite my fear and anxiety, I knew I didn’t want my cancer or treatment to define me as a person. Honoring that wish turned out to be much easier in theory than in practice, as even a well-intentioned question like “How are you?” served as a reminder of my circumstances.

There were also some insensitive remarks that cut far deeper. One person told me, for example, that God never gives us too much to handle. Another described how cancer was a blessing reserved only for the strong—if this is true, I’d much rather be weak. Someone else suggested my cancer was a result of some transgression to God and that I should make amends.

Despite being surprised by these comments, I understood. People say a lot of things when they are faced with the uncomfortable concept of mortality. And my cancer was a tangible reminder of what we all know and ignore: Each of us has a finite amount of time.

It was shortly after I started losing my hair, a side effect of chemotherapy, that I began noticing others were uncomfortable around me. Some family and friends even avoided making eye contact when talking to me. Others used text messaging to avoid uneasy verbal conversations. With no one in my immediate circle undergoing cancer treatment, I felt alone.

That’s when I started discovering support in the most unlikely places. In the pickle and condiment aisle at the grocery store, a woman turned to look at me, a wide smile across her face. Not too long before our meeting, that woman wore a cap just like mine. She shared that she was two years out of treatment and her scans were still “clean.” We spoke for a bit, tearing up. I held hands with this kind stranger for a few moments. We hugged, wished each other well and went our separate ways.

At a clothing store, another woman stopped me after spotting that cap, which gave my cancer away. Apologizing first for interrupting, she then told a familiar tale of symptoms, diagnosis, surgery, treatment and the worst part: waiting. Still, she was approaching the five-year mark since her diagnosis with no evidence of disease. Speaking from a place of vulnerability but also strength, she described how her cancer had helped her to become more compassionate, a virtue that she would surely lean on, since her husband had been newly diagnosed with cancer. As we said goodbye, I promised her I would stay positive and upbeat—and strangely I wasn’t lying.

All through my treatment, chance encounters with people who knew what I was experiencing came to me just when I needed them. I saw these people as angels, and still do. They came with no judgement or preaching. There was no awkward response or agenda. Our connections were palpable.

There were other signs: I found feathers everywhere, next to my car in a parking lot, the floor in the garage or at the park. One simply blew in on a breeze and landed right at my feet. And each time I made a discovery of these gifts from nature, a sense of warmth and protection would envelope me. I have always believed in angels; I found it encouraging to think that they believed in me too.

For now, my treatments are over. My hair and eyebrows are growing back. My recovery continues. There will be more doctor appointments, more exams, and more wondering about and praying for a future with no more cancer. I’ve changed too. I am smarter, kinder and less quick to judge. When I am out of the house, I scan my surroundings for people like me—signs of treatment, signs of fear—to offer an encouraging word. I don’t know what the future holds, but I can’t help but believe that I am going to be OK. ​

Patricia Anne Ward of Gaylord, Michigan, is a retired human resources administrator and supervisor who has been married to her husband, Richard, for 30 years. She is the former president of a local animal welfare group, Friends for Life of Otsego County. Her proudest title is survivor.​

5 Things Never to Tell Someone Fighting Cancer

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This blog was originally published by I Had Cancer on August 6, 2019, here.

Since being diagnosed with non-Hodgkin’s lymphoma in November, I’ve received so much love and support from those around me. Weirdly and surprisingly, I have become closer to some of my friends who were suddenly and unequivocally there for me. I have made new friends from acquaintances who decided it was their job to support me. I have learned to ask for help, which is huge given that I come from the Do Everything Yourself school of thought.

As a prominent member of this school, I also can’t handle unsolicited advice. While most people have been nothing but kind and understanding, some have made it their business to tell me how things “really are”. They think that the fog of cancer is sometimes so all-enveloping that you apparently become confused if not downright mistaken about the why, how and what of your condition. So thank you, casual acquaintances and random strangers in waiting rooms, for enlightening me with your non-specific one-size-fits-all statements. If you’re worried you might be doing this, here are the five hands-down worst things to say to a cancer fighter:

“Sugar feeds cancer”

You will be surprised how, when they find out about you having cancer, some people immediately think “Why”.” And then, almost by magic, their single-track train of thought alights upon “Oh, SUGAR”. The silent killer. The symbol of all that is wrong with society today. Some will whisper, “So, have you changed your diet in any way?” and you know exactly where this is going. Others will just say it outright, like a mantra, “Sugar feeds cancer, y’know.” Initially I was keen to be like, “Yes! Yes! I’m eating so healthily!” Then I thought to myself, I’m the one with cancer here. I’m the one walking around with a 4 inch lump in my chest, sitting in hospital beds while IV fluids pulse their way into me, taking all the pills, feeling all the nausea. I thought, wait a minute. You must be kidding me with your sugar theory.

Because, people, here is the bare-naked truth. It’s a myth. No medical doctor and no reputable cancer institute will tell you that sugar causes cancer, or “feeds” your cancer. One of my oncologists actually had candy on her desk, which frankly might be a little overkill because candy probably isn’t good for anyone. But maybe she was trying to prove a point: You have cancer, have a lollipop! You’ll be fine. FINE. It will not feed it. It will not make it worse, nor will it make it better. Your teeth may rot though.

In the interest of factual accuracy, there has been one recent study using yeast cells (which are similar to cancer cells, but obviously not actual cancer cells) that seemed to suggest that sugar contributed to more growth in these cells. This study has not been replicated so far. And yet, Dr Google will tell you that yes, sugar feeds cancer. The real link here though is that a high sugar diet could make you obese, which is a risk factor for some cancers. THAT’S IT. That is the only proven link at this time.

But let’s assume that it is true, that sugar may actually cause cancer, and then proceed to help it grow. Well, even if this were so, here is my theory: life is short, have it if it makes you happy. Just maybe don’t overdo it, like with everything else. If you ate kale all day it would be just as problematic. But no one is going around saying “You know, kale feeds cancer”. Also, if I want to down packets of sugar from dawn until dusk that is nobody’s business but my own.

“Be positive!”

I don’t know about you, but my first reaction to anyone telling me to “be” anything is, Why the hell should I? You be it! So obviously this one doesn’t go down well with me. And yet, everyone says it.

“You have to stay positive.” There are two things I resent about this statement. Firstly, it implies that by being positive I somehow will have a hand in curing the cancer. Following this thought through, it also implies that if you’re not positive, well, you only have yourself to blame if it all goes hurtling rapidly down the shit-hole. Sound medical thinking there, thanks Denise. Secondly, it implies my outlook on life is unsuitable and that I need to do it this way, the right way. (As a side note, has telling someone to feel a certain thing ever worked? You feel what you feel, no amount of telling is going to change your complex emotions. Just a tip people: Saying it doesn’t make it real. So shut the hell up).

Going back to the outlook on life issue, I feel like I’m generally a cup-half-full girl. I try to believe people are doing their best (except when they tell you sugar feeds cancer), and I strive to find humor and silver linings in the big and little bumps along the way. But I also get down at times. Since being diagnosed, I’ve had moments when I felt like I couldn’t carry on, when I believed I was actually dying, when I had no fight left. When everything seemed bleak, and yes, negative. And even now that I’m cancer-free, I know there is a (small, but real) chance it will come back. That’s not negativity, it’s statistics. Here’s the thing: Be Positive negates the richness and complexity of our human experience, and reduces a heart-breaking, painful, awakening experience to a happy face emoji. I think the reason people say it is that cancer makes them uncomfortable, and they want you to just frozen-smile your way through it so they will feel untarnished. Well, that’s their problem, not mine.

“You will be fine”

Ok. Really?? Will I really be fine?? Because you say so?? A few years ago, I did a doula training course. It was amazing and bonding and revealing and I remember one thing that was emphasized was never to tell a pregnant or birthing woman she will be fine, BECAUSE YOU DON’T KNOW THIS. All you can do is be there to support her, encourage her, and be her advocate. But you can’t tell her how it’s going to pan out. Nobody can, really. So just don’t say this. Just don’t. The other thing is, like Be Positive, it negates the hugeness of the situation. It reduces a life-changing event to “Oh, don’t worry, it will be just fine.” No need to stress. Oh right, thanks for that, I guess I’ll stop crying into my pillow and frantically scribbling my dying wishes, BECAUSE YOU SAID SO.

“Everything happens for a reason”

Oh, and would you care to enlighten me on what this reason you talk of might be? And would it happen to also be the reason why sea turtles swallow plastic bags, mothers and babies die in childbirth, wars happen, and the world is warming up? And if so, pray tell me, should we sit back and watch because we’re all part of a grand plan? If I do nothing, will my cancer just go away if it is meant to? If I die, will that have been part of the plan? If I get better, will there be a reason for that? You weren’t expecting all the questions? I feel like you are getting the point, so I will stop here. And so should you, a couple beats ahead of ever being tempted to say that phrase to anyone going through something as random and pointless as a cancer diagnosis at 36 years of age.

“You should be thankful you have children already”

Not only do you not get to tell me what I should and should not be thankful for, but you don’t get to assume that because I am still alive that from now onwards I should just shut up and be grateful I was spared, and never ever want or desire anything else. I think this statement is perfect in a way because it encapsulates all that cancer steals from you, and all that it brings to life. A cancer diagnosis means that suddenly you go from planning the rest of your life, to trying to figure out if and how you’re going to be alive in a few months’ time. You go from believing you’re only just getting started, to thinking, This is the literal end. So of course when you find that, after all the treatment, you’re still around, you can’t quite believe your luck. You promise you’ll embrace life and all that it has given you with way more gratitude and grace; you say to yourself that your two healthy children, loving husband, friends and family are enough. That the fact you can get out of bed and breathe without coughing, and pick up your child without pain, and walk and swim and (yes!) do cartwheels is the biggest gift and you will forever be thankful. And I am.

But here’s another thing I have learned: feeling desperately sad, or complaining, or having tough days, does not make you ungrateful. More than one thing can co-exist within me. I can be endlessly thankful for my wonderful children, and yet struggle with the fact I will never have another child. We knew this could happen. Infertility, in all shapes and forms, is the worst form of regret – regret over something that you couldn’t possibly have done. There is no redeeming yourself from it. You’re grieving for what never was. So when a doctor asks me if I have children, and I say yes I have two, and I see relief in their eyes and smile, I think, don’t say it, you know nothing about me.

Advocating for Yourself as a Cancer Patient

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This blog was originally published by Everyday Health by Cheryl Alkon on August 22, 2019, here.

 

When Karen Berk was diagnosed with stage 4 ovarian cancer, taking on the role of advocate helped her gain knowledge, emotional centeredness, and a feeling of control.

By 

Last Updated:  8/22/2019
The Berk family, from left: Sarah, Emily, Karen, Jeff, and Jason.
The Berk family, from left: Sarah, Emily, Karen, Jeff, and Jason.
Photo Courtesy of Jeff Berk

When Karen Berk first had trouble breathing, her primary care physician sent her to the nearest ER, where doctors extracted almost 2 liters of fluid from her lungs. A few days later, she went to a follow-up appointment. Expecting to hear that she had some kind of infection, she instead learned she had cancer. Later, she and her husband, Jeff, found out it was ovarian cancer, stage 4.

Berk, then 44 and the mother of toddler twins and a first-grader, was shell-shocked.

“I was in denial,” she said. “Cancer? This can’t be. It didn’t make sense. But now I know it doesn’t have to make sense. In the beginning, I blindly listened to my doctors because I didn’t know what else to do.”

Berk died in November 2018 at age 49 after living with cancer for five years — longer than her physicians predicted she would — during which she experienced several cycles of remission and recurrence. More than a year before her death, she spoke in an interview with Everyday Health about how coming to terms with her diagnosis meant becoming an advocate, for both herself and other people with cancer.

At first, this meant learning all she could. “I researched terminal cancer in general, how you can keep going when you know you are going to die sooner than other people,” she said. “I read as much as I could and learned what I found most helpful,” much of which came from a forum on a website called Inspire, where she could read questions and answers from other people with ovarian cancer.

“In the beginning, I read everything that interested me, which was everything,” Berk said. “I would read posts from people with the same diagnosis who had lived for seven years with stage 4, and I could see that I was not the only one in the world with this condition at my age,” which was a good 20 years younger than the typical woman with ovarian cancer.

“It gave me knowledge and power and control, and that made me feel better,” she said.

Getting Emotionally Centered

After receiving a stage 4 cancer diagnosis, patients may feel the need to tamp down their anxiety, anger, and fear and focus their energy on coming up with an action plan. But experts say it’s important for patients to take the time they need to process their feelings and look for emotional support.

“Try not to rush into anything,” says Lidia Schapira, MD, an associate professor of medicine at Stanford University Medical Center in California and the director of Stanford’s cancer survivorship program. “Try to harness compassion toward yourself.”

Coping with a cancer diagnosis means feeling what you need to feel, not just throwing yourself into crisis mode. “It’s a time to let advocacy turn inwards,” Dr. Schapira says.

Finding Your People

For Berk, traditional cancer support groups “weren’t good for me at all,” in part because she was much younger than everyone else. For instance, other participants would share that when they felt sad, they would play with their grandchildren for a mood boost. “My own kids were young, and I knew I’d never [live long enough to meet my] grandkids,” Berk said. “I stopped going to the groups because they made me feel worse.”

Berk found more comfort at a retreat in Stowe, Vermont, called the Stowe Weekend of Hope, an annual, low- or no-cost event for people with cancer and their families. Not only did she meet women she connected with, she learned information that proved invaluable.

It was May 2015, and Berk was dealing with her first recurrence after chemotherapy and radiation had sent her cancer into remission. She had terrible fatigue and was forced to use a walker. None of the doctors who had treated her in Massachusetts, where she lived, felt they could help her. But she’d found an oncologist in California who specialized in helping people with her particular type of recurrence. She just needed to figure out how to pay for the West Coast flight.

When she shared her dilemma with other attendees at the retreat, someone brought up Angel Airlines for Cancer Patients, a charity for people who need financial help to travel for treatment. Berk was able to get a $600 credit to fly to California. She saw the doctor, who recommended a chemotherapy regimen for her to pursue in Boston. Within a few months of starting the chemo, she could walk without a walker again.

Advocating for Others

As Berk’s health improved, she shared her insights on the Inspire forum. For instance, after two recurrences, Berk began taking a new targeted medication called Lynparza (olaparib) in pill form at home. She described how she worked with her insurance provider to avoid having to pay out of pocket for the drug, which can cost up to $10,000 a month. She also posted about her experiences taking the medication and answered questions about side effects.

On the forum she urged others to advocate for themselves: “Be on top of everything — know what your CA125 numbers are [the markers used to determine whether cancer has returned] and what your MRI results are [to determine exactly where in the body cancer has returned]. Push for results when you have an MRI, and call every day until you get results. When you can catch recurrences early, there are more options.”

Berk also encouraged other people on the forum to take advantage of “the stupid little things,” as she called them, that make cancer treatment less onerous. As an example, she described talking to a social worker at her oncologist’s office to work out how to get her parking fees waived: “I’m going there for the rest of my life, at least once a month, and paying $12 to $15 each time.” The social worker was able to get her a pass for free parking. “There are things you can take advantage of if you know who to ask,” Berk said.

There are a lot of ways to become a cancer advocate. “Everyone can do something,” Schapira points out. “I think all of us need to help others through bad times, and however someone can give back, whether it’s starting a new nonprofit that addresses a need, joining a fund-raising walk, or making a small financial donation to a group on the ground doing this kind of work.”