Originally published on Future of Personal Health

A rare cancer diagnosis is a lonely thing. For those of us with low-grade serous ovarian cancer (LGSOC), the pain of isolation is amplified by a poor prognosis, knowing there are no specialized treatments for our disease.

In 2018, Jessica BeCraft’s cancer was discovered during an unplanned C-section for her daughter, Harper. At the time, she thought, “Low-grade means it must be early. I’m sure I’ll be fine.”

She would learn that “low-grade” does not refer to the severity of the disease, but rather the type of cells, which are slow-growing and persistent. Unfortunately, this slower growth makes LGSOC harder to treat because it often doesn’t respond to the drugs that target other ovarian cancers.

Discouraged by the lack of treatment options and research funding, in 2020, Jess brought together two other women with LGSOC to create the first nonprofit in the United States dedicated to improving outcomes for the disease — STAAR Ovarian Cancer Foundation. The acronym stands for “Survive. Thrive. Advocate. Advance Research.”

Creating more optimistic outcomes for others
Jess’s cancer was not caught early. It was stage 3C. She knew she might not survive long enough to benefit from research funded by STAAR, but she was committed to improving the prognosis for others. 

Jess BeCraft passed away at age 37 in September 2021. Another of the co-founders, Alexandra Feldt, died a year earlier at age 34. The third, Bailey Wolfe, serves on STAAR’s all-volunteer board, which includes five other women with LGSOC.

What started with birthday fundraisers and a virtual Turkey Trot during the pandemic grew into a community where no one with LGSOC has to feel alone in their diagnosis.

In addition to contributing more than $600,000 so far to LGSOC research at leading institutions, STAAR has advanced understanding of the disease in collaboration with other organizations, including Cure Our Ovarian Cancer and the World Ovarian Cancer Coalition.

Last year, those partnerships led to the first-ever ovarian cancer patient meeting with the FDA and the first global survey about the patient impact of LGSOC.

A major takeaway from both is that although the cancer is rare, many have similar stories. The survey found that 99% of people had never heard of LGSOC before being diagnosed with it, and on average, it took nearly three years to get an accurate diagnosis. 

Delayed diagnoses and improving education
Like other ovarian cancers, LGSOC has no early detection test and is frequently diagnosed in later stages because of a general lack of awareness about the most common symptoms, which can include bloating, changes in bowel and urination habits, menstrual irregularities, and back pain.

Another challenge that’s delaying diagnoses is that LGSOC affects a younger demographic. Half of diagnoses occur before age 45. Two-thirds of the women surveyed said their healthcare providers initially dismissed their symptoms. Many diagnoses were delayed because of a misconception that 20 or 30 is too young to have ovarian cancer.  

This younger age range means most people with LGSOC are premenopausal. Low-grade serous cells have been found to be estrogen-sensitive, so many patients take a hormone blocker to try to slow or prevent cancer growth. These women are thrust into menopause decades ahead of their time, which affects fertility and libido. LGSOC literally steals years from their lives.

The low-grade community brought this to the attention of the federal agency responsible for evaluating new drugs during the patient meeting led by STAAR Board Chair Nicole Andrews.
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“Our stories, experiences, and advocacy during the meeting served as a powerful catalyst,” Andrews said. “It brought attention to the urgent need for a deeper understanding of the challenges faced by those with low-grade serous ovarian cancer.” 

A year ago this week, we held the first patient-focused drug development (PFDD) meeting for LGSOC with the FDA. Not only was this a first for LGSOC but a first for ovarian cancer overall.

One of the FDA’s missions is to protect and promote public health by evaluating the safety and effectiveness of new drugs, biologics, and devices. The FDA does not develop drugs nor conduct clinical trials. The FDA does, however, play a constructive role in guiding, helping, or evaluating the pre-clinical, translational, and clinical development work of potential new medications.

The PFDD meeting gave the LGSOC community an opportunity to share their views and stories with the FDA, including the importance of developing and bringing more therapies to patients. STAAR partnered with Cure our Ovarian Cancer and World Ovarian Cancer Coalition on this meeting and the outcome of the meeting was a clear roadmap for what needs to improve.

The information obtained at the meeting and summarized in this report is anticipated to lead to more dialogue between stakeholders in the LGSOC community, with the goal of gaining patients’ perspectives on their condition and therapies available to treat the condition to aid in decision-making for drug development and clinical trials for LGSOC, to ultimately improve the overall quality of life for patients.

At a high level, what the meeting found are the following areas of need:

• Education and awareness of LGSOC amongst healthcare professionals 
• FDA-approved treatments for LGSOC, including more research
• Better education about the side effects of aromatase inhibitors 
• Communication about sexual health with healthcare professionals or caregivers
• Early detection tools and tests for diagnosis before symptoms start 
• Noninvasive treatment options

Thank you to everyone who shared their stories and participated in the meeting. A year after the meeting, STAAR continues to make significant strides in addressing the awareness, research and support needs in LGSOC.
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September is Ovarian Awareness Month, which means it’s time for STAAR’s Step Up America Campaign, the most impactful awareness and fundraising program we execute together all year. It is our biggest fundraiser, where we bring in the vast majority of our donations.

Why do we need more awareness and funding for LGSOC?

We know from hearing from STAAR members and the landmark survey of 180 people across 10 countries that we were part of in 2023 that while we are making progress, we need to keep up the momentum of awareness, research and support. This survey alone found that for the majority of patients it took an average of nearly three years to get an accurate diagnosis, with many experiencing misdiagnoses or having their symptoms initially dismissed by a healthcare provider. And there are still no FDA approved medicines specific to LGSOC.

What has STAAR accomplished with the help of fundraising?

Since STAAR’s founding in 2020, we have made major strides in connecting the LGSOC community in the United States and with our partners globally.

• We helped to fund significant research focused on LGSOC.
• We established an LGSOC Awareness Day during Ovarian Cancer Awareness Month to focus attention on this rare cancer.
• We led the first FDA patient meeting about LGSOC, which educated the federal agency about the patient impact of the disease as they make decisions about potential new treatment options.
• We partnered with the World Ovarian Cancer Coalition and Cure Our Ovarian Cancer and experts around the world in the first global survey about the patient impact of LGSOC.
• We have raised awareness locally and nationally about LGSOC and the importance of symptom awareness through grassroots events and major media coverage.
• Most importantly, we have formed a community where no one with LGSOC has to feel alone in their diagnosis.

None of this could have happened without the contributions of our founders, our Board, our volunteers, our industry partners and family, friends and others living with LGSOC who have donated their time or funding to help our progress.
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Why should I get involved?
In order to make more progress against LGSOC and to support those living with it, significantly more research and awareness is needed. STAAR is the first advocacy group in the United States to focus on LGSOC by funding research to provide better outcomes, and offering resources and a place to connect. And STAAR is 100% volunteer-run, meaning more of every dollar goes directly to the mission.
 
How can I provide support?
Fundraising, Donations, Employer Matches and Volunteering, including our Step Up campaign, which is in full swing for September, at any level are all deeply appreciated.
 
Throughout the month, we support individuals in creating their own events to fundraise for research and spread awareness about LGSOC symptoms. We welcome events as large as a city-wide 5K and as small as a group of friends getting together for coffee. This year we also have the virtual Step Up America Step Challenge, creating an easy way to participate for those who can't host an event!

All participants can also order a Step Up T-Shirt with common LGSOC symptoms on the back to help spread awareness!
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​I’m the friend Nicole referred to in this blog post, the one who learned of a likely recurrence right before my 4th surgeversary.

I was diagnosed April 1, 2020, and celebrate that each year with cake because that’s a clear anniversary of a day something happened. On March 31, I didn’t know I had cancer. On April 1, I did. Some people say they celebrate the day they found out they had cancer because that’s the day their lives were saved.

As I’ve ticked off the number of years I had no evidence of disease (NED), I used the anniversary of my surgery, June 22, 2020. That was the day all my tumors were removed, but I didn’t really know I was NED until CT scans months later showed no signs of cancer.

On June 19, 2024, my CT scan showed a 17 mm ovoid mass near my bladder, described by the radiologist as “highly concerning for metastatic disease.”

So I couldn’t very well celebrate being 4 years NED, could I? 

For me, this is a solid argument for celebrating (or commemorating, if the word celebrating feels inappropriate) the date of diagnosis. That date won’t change.

I had all my reproductive organs removed. How is a recurrence possible?

I’m not that surprised by what I’ve started calling “my little recurrence.” More than 80% of people with low-grade serous ovarian cancer experience a recurrence. I tempted fate by ceasing to take an aromatase inhibitor to block the production of estrogen. This is the standard of care for LGSOC treatment, but I was experiencing unbearable hand pain as a side effect. After discussing it with my doctor, I stopped taking the hormone blocker Letrozole.

As soon as I got my CT results, I restarted taking Letrozole, and the plan is to rescan in three months to see if it has any effect on my little recurrence. If there’s anything left to remove, I’ll have another surgery. Once that’s done, I hope to restart my NED clock. I’ll have a new surgeversary to count my years without visible cancer.

Living with Uncertainty

​In addition to wondering whether to celebrate some kind of cancerversary, people with ovarian cancer also struggle with whether to call themselves survivors, or even whether to say “I have ovarian cancer,” or “I had ovarian cancer.”

During the time I had no visible disease, I took to using the phrase, "Life after LGSOC," to describe my situation in my social media bios. In the days following my CT scan report, I revised them to "Living with LGSOC." Many of us feel like we always will be living with the disease, even when we have no sign of it.

Last year's survey of people with LGSOC found that most of us consider living with the uncertainty of a recurrence is one of the biggest challenges we face.

Which brings me back to cake. Whether you take inspiration from The Cancer Patient's Hall of Fame cakes and have a sheet cake decorated with a quip like "Not dead yet," or "Good job not dying," or whether you buy yourself a cupcake when you remember, "Oh yeah, today is the anniversary of my second chemotherapy," as far as I'm concerned, there's never a bad time to celebrate with cake.

Although it might feel upsetting and overwhelming to add fertility discussions to your long list of questions and concerns with your doctor after receiving an LGSOC diagnosis, experts have found that many people benefit from having talked with their doctor.

“Read about what different treatment options are out there and be your own advocate. …Any discussions and plans should always be with your fully informed consent. With low-grade you have time to weigh up options and not rush on in with sheer panic. This is a slower growing cancer and it is worth taking time to really get to grips with what the next steps should be. Above all, be kind and patient with yourself because coping with the news that you have this disease is very challenging." 
–Diane, LGSOC patient

Many people diagnosed with low-grade serous ovarian cancer (LGSOC) are pre-menopausal, of child-bearing age and may want to give birth and create or grow their families. The information to understand and decisions that are required right away when receiving a cancer diagnosis are significant and can be overwhelming. And with LGSOC, it’s often a challenge to even get an accurate diagnosis and clear treatment plan. So how can thoughts about fertility preservation or family-building take up space given all that?

Adding to the challenge, according to experts, family-planning conversations with your doctor are best to have before any treatment starts. There are some resources that may help and as always, talking to your doctor and tapping into your support resources are often the best place to start.
What are some of the topics to discuss with care teams and where can you go for more information?
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• Identifying the right doctor for you will impact every step and outcome of your diagnosis, including discussions around fertility Check whether your doctor has experience with LGSOC. If not, see if there is a doctor in your area who does or ask your current doctor to arrange a consultation with an LGSOC expert who is well informed about the latest treatment advances and learnings and how to navigate options for building a family.

 

• Learn more about options. While you don’t have to become an expert, having a general sense of fertility preservation strategies and how different treatments impact the ability to carry a child will help inform the questions you may want to ask or clarify options.

 

• Lean on your care partners and connect with others to balance how much you take on versus what you need help with. If you have a partner, family member or friend who can do the “legwork” and research options and attend doctor appointments with you where fertility planning is being discussed, it may provide additional support and an outlet for discussion and decision-making. Or you or your care partner may want to tap into a support group where you can learn about others’ paths and decisions. Learn more about finding support

 

• Tap into patient groups specifically focused on fertility preservation and family building for patients with cancer and have programs to help. The Alliance for Fertility Preservation is made up of a team of professionals who have come together to advance the field of fertility preservation. They have created a program that was designed to help find fertility preservation and family-building services quickly.

Like me, a friend who has always celebrated her cancerversaries with a lovely cake and posted celebratory pictures, recently was told of a suspicious area.

Similar to me, this information came as she approached her four-year NED mark. Like me, she worried she's  no longer NED and wouldn't get to celebrate that milestone.

​This announcement struck a chord with me. Not at her, but that a small millimeter mass of cells may rob my friend of a celebration! 

Why are we giving this disease the power to rob us of cake?  I’m sick of this disease and of what it has robbed from me. 

If we call it an NED celebration, we're celebrating No Evidence of Disease—a phrase with the word DISEASE in it. Why don’t we celebrate something in a positive manner that doesn’t make mention of our disease? We should celebrate the day we recognized the preciousness of life. Or the years we appreciate being alive.

I finally realized I have a problem celebrating my disease and diagnosis. These are my condition but not worth celebrating. Can’t we come up with a phrase that doesn’t have us look at our disease?  I am not my disease. It will not have power over me. I will celebrate the time in my life I saw what was really important. The day I saw that I didn’t have time for negative or toxicity. The day I realized I was really going to live! The day I decided to fight to live!

So friends, what are we really celebrating? Let’s find a phrase that encompasses what is worth celebrating. ​

STAAR Ovarian Cancer Foundation has been run completely by volunteers since it was created in 2020 by three women with low-grade serous ovarian cancer.

Co-founders Jessica BeCraft, Alex Feldt, and Bailey Wolfe were STAAR’s first volunteers, launching efforts to raise money to fund research into treatments for their ovarian cancer. 
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It makes sense that most of STAAR’s board members and volunteers have been low-graders, not just because they are the ones to benefit from advances in treatments, but also because most people have never heard of LGSOC. (A recent survey of LGSOC patients found that 99% had never heard of it before they were diagnosed with it.)

After four years, STAAR’s board has grown to nine members, most of whom have low-grade serous cancer. Others were motivated to dedicate their time because of their love for STAAR Board Chair Nicole Andrews.

“I am often asked if I have ovarian cancer because I am so active in STAAROC,” said Alyssa Toomes, STAAR Vice Chair–Fund Development. “In 2020 when my best friend, Nicole, was diagnosed, I knew immediately that she would take me along on this journey.”

Alyssa also has been the chair of STAAR’s annual Step Up America for Ovarian Cancer campaign, which encourages fundraising events across the country during Ovarian Cancer Awareness Month in September.

“I willingly jumped on the train and became involved by helping to organize Nicole’s first Step Up America walk,” Alyssa said. “I have found the variety of events we offer through Step Up America makes it fun to organize and provide information and support to participants. The opportunity to serve on STAAR’s board has been twofold by fulfilling a passion for service and supporting my best friend by funding research.” ​

STAAR Treasurer Christina Campbell is another childhood friend of Nicole’s.

“Hearing about her cancer and having two family members who have had ovarian cancer of course makes me want to get involved and help make a difference,” she said. “Nicole is one of the sweetest friends and her caring and bubbly personality shines in everyone she meets. So, when Nicole asked me to join the board as Treasurer, it did not take me long to respond. I wanted to join not only to help a dear friend but so many other people I could possibly help make a difference in their lives working with such a great and growing organization as STAAR Ovarian Cancer Foundation.”

In addition to the board members, the foundation relies on efforts from a committee of volunteers who help plan events, create social media posts, conduct outreach, and design the website.

STAAR’s volunteer web designer Amanda Royse didn’t know anything about ovarian cancer, let alone LGSOC, before her good friend STAAR co-founder Alex Feldt was diagnosed with it.

“After she died, when STAAR put out a call for volunteers I wanted to learn more,” Amanda said. “I have been blown away by the patient stories and the frustrating diagnosis journeys that these women have gone through. 

“While LGSOC might be rare, a lack of advocacy and awareness around women's health is not,” she said. “I think it is important to lift up the voices of these incredible people who strive to be heard despite suffering a complicated and painful disease. I am so glad to be a part of a team that is working hard to make change.”

No close, personal connection with the disease is required, however. Lisa Buffington has partnered with STAAR through her work in biotech to raise awareness of the disease with policymakers and the media.

“I continue to be driven to raise awareness of LGSOC, its symptoms, the fact that it affects younger women who may not be aware of what to look for, and the need for more research and treatment options,” she said. “STAAR's leadership and progress along with leading clinicians and researchers are making real change. I have met women diagnosed with LGSOC from all over the world and feel deeply committed to partnering with them to make a positive difference.” 

Read more about what STAAR has accomplished over the past four years under Research + News and Voices of LGSOC.
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Then a video statement from the Princess at her home in England was released and the world found out the people’s Princess of the twenty-first century did indeed have cancer. The young mother of three was undergoing preventative chemotherapy and was saying she would be okay. Doctors from my hospital were on the news describing what they believed she was going through, and one of guesses was that she may have ovarian cancer. (We do not know what type of cancer she has at this time, and several types could impact the abdominal region. Ovarian cancer symptoms are notoriously hard to detect).

I was flooded with memories from 2019 and 2020. A whirlwind surgery, a definitive cancer diagnosis, six chemotherapy treatments, the start of lifelong medication protocols, and cycles of imaging. My first encounter with depression and anxiety, running like a stream through my everyday. 

While I would never wish my experience on anyone, I found myself hoping that she had the same disease as me. What a difference a woman of her status could make for awareness, funding, improving our chances! I also felt a sense of validation. If a woman with infinite resources could have cancer, anyone can have cancer. It’s not our fault.

I saw a post that said the King has been in constant, close contact with the Princess. She’s truly not alone. While my dad's disease was not nearly as advanced as mine and therefore more curable, those early months of his treatment brought us closer than ever. I had someone to go through this with and I wasn’t alone. 

In recent years, preventative screening for several cancers has been recommended to start at younger ages. Over the last five years the chances of having cancer in your lifetime has changed from 1 in 3, to now 1 in 2. While I wish no one had to hear the words “you have cancer,” the fact is many of us will. And hopefully two of the most senior royals in the world hearing those words within weeks of each other will bring more awareness and funding. 

Because of her young age, if she does have ovarian cancer there is a chance it’s low-grade serous ovarian cancer, rare form of the disease that disproportionately impacts younger women like me. That’s why I volunteer with STAAR Ovarian Cancer Foundation, the only US-based charity dedicated to funding LGSOC research.

The recent announcement regarding the Princess of Wales's health has brought forth a flood of emotions and reflections, not just for me, but for many who have faced the challenges of cancer. While I initially speculated about the nature of her condition, the confirmation of her diagnosis serves as a reminder that cancer does not discriminate based on status or resources. It is a universal battle that requires unity, awareness, and funding for research.

As we navigate through our own journeys, whether as patients or supporters, let us continue to advocate for early screening, research advancements, and compassionate care for all those affected by this disease. May the shared experiences of individuals, regardless of royal titles or societal standings, ignite a collective effort towards a future free from the fear of cancer.
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When I was diagnosed with ovarian cancer at 44, I knew a lot of people my age who’d had breast cancer, but none who had ovarian cancer. It seemed like a disease that affected mostly older women. 

I heard the term “low-grade serous” for the first time after surgery. Not only does this rare cancer affect people at a younger age, but the cells are slower growing that most other ovarian cancers, which likely explained why chemotherapy had failed to shrink my tumors.  

I’m not the only low-grader who’d never heard of LGSOC before being diagnosed with it. Last year, STAAR partnered with Verastem Oncology, Cure Our Ovarian Cancer and World Ovarian Cancer Coalition to conduct the first-ever multinational survey of people with low-grade serous ovarian cancer. Of the 186 people who responded, 99% had never heard of it before finding out they had it. And even after having the disease, 40% still didn’t know that LGSOC is NOT a less severe form of ovarian cancer. 

Because low-grade cancer cells are completely different from high-grade cells, they don’t respond to the same treatments. And because it’s less common, there’s less research and no specialized treatments. The data from this survey is essential to improving understanding of the disease, so that treatments can be developed with low-graders’ specific needs in mind.
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