Two years ago, next month my young friend Emily Campbell of Miami, Florida, found out she had ovarian cancer. She is now cancer-free, but as you know, she paid a big price to live a long, healthy life. Emily and her husband Chris decided that they didn’t want anyone else to go through what they experienced. They are hoping to raise $100 million over the next few years to find a cure. I can promise you that this is the couple to get the job done.

I am the press contact: loisw@hwhpr,com  Make sure you read the frequently asked questions below . It will answer the most immediate questions you will have.

“Not These Ovaries”

Emily and Chris Campbell have launched “Not These Ovaries, Inc.” (NTO), a 501(c)(3) non-profit organization that will help accelerate funds for ovarian cancer clinical trials and support frontline researchers.

Their goal is simple. They don’t want anyone in the future to go through the hardship and anxiety they went through two years ago when Emily was diagnosed with ovarian cancer.

“We were on our own to find a cure,” explains 35-year-old Emily Campbell, who is now cancer-free. “We knew from the beginning that this disease needed more research and definitive answers. It was a guessing game for us from the start.”

Ovarian cancer presents unique challenges, including the struggle to find accurate information and appropriate medical care. Many patients face conflicting advice, outdated resources, and long waits for specialist appointments. The rarity of certain ovarian cancer types — such as borderline ovarian tumors (BOT) and low-grade serous (LGSOC), which serve as particular areas of focus for NTO — often means that even experienced physicians may lack familiarity with the latest diagnostic techniques and treatment options. This information gap can lead to delays in diagnosis, misdiagnosis, or suboptimal treatment plans, underscoring the critical need for improved education, research, and support networks in the field of ovarian cancer care.

Adds 38-year-old Chris Campbell, Emily’s husband and advocate: “We had to spend weeks sifting through convoluted medical websites, fighting for timely appointments, navigating antiquated processes, battling medical gaslighting, and even hand-delivering medical specimens to secure second opinions in time to finally get the right diagnosis. It was a torturous time.”

The Campbells believe that “Action Saves Lives.” They also believe that the more information that is shared, the better the results.

According to research:

• 1 in 10 people diagnosed with ovarian cancer is under 45.
• There are two rarer, less understood types that often affect this demographic: borderline and low-grade serous. But there’s very little research and funding into these — donations can change that.
• The average survival rate for low-grade serous ovarian cancer is 9 years.
• It’s notoriously hard to detect and even harder to treat — mainly because there hasn’t been enough research.
• There are currently NO proven FDA-approved drug treatments.

Besides a surgery developed decades ago that often involves removing the entire reproductive system (resulting in early-stage menopause and fertility loss), there are no tests to detect ovarian cancer, no FDA-approved drug treatments to manage it, and no vaccines to prevent it. There’s hardly any research about borderline and low-grade serous ovarian cancer at all. Not These Ovaries is working to change that.

The Campbells feel that their experience in recent years raising investment capital for a leading B2B marketing software and technology company taught them the skills they needed to help fund the most promising ovarian cancer research work.

Most recently, Emily and Chris partnered with Dana-Farber Cancer Institute, raising $1.8 million for one of the largest low-grade ovarian cancer projects in the U.S. Following that experience, the Campbells founded NTO to raise $100 million to better the lives of tens of thousands of women impacted by this disease each year.

Emily and Chris are available to answer any questions donors may have. Visit https://www.nottheseovaries.org/ to make a connection.

The NTO website also contains information about the studies and trials the Campbells are helping fund, with more added every week.

FAQ’s for Not These Ovaries

What is ovarian cancer?

Ovarian cancer is a complex and aggressive disease that originates in the ovaries (the female reproductive glands that produce eggs) or the fallopian tubes. It occurs when cells in the ovaries grow abnormally and uncontrollably, forming a tumor.

Who can get it?

Ovarian cancer typically develops in older women, with about half of all cases occurring in women 63 years or older. However, it can affect women of all ages. In the U.S., a woman’s risk of getting diagnosed with ovarian cancer in her lifetime is about 1 in 78 (Cancer.org).

Ovarian cancer ranks 5th in cancer deaths among women, accounting for more deaths than any other cancer of the female reproductive system (Two Onc Docs). Projections indicate nearly 12 million women will be diagnosed and 8 million will die from ovarian cancer by 2050 (2024 World Ovarian Cancer Coalition Ovarian Cancer Data Briefing).

What are the symptoms?

Although it bears the enduring label of “silent killer,” ovarian cancer symptoms do exist; however, it’s crucial to note that these symptoms often don’t arise until the cancer has reached advanced stages. This makes early detection particularly challenging. When symptoms do appear, it’s essential not to overlook them, particularly if they persist, intensify, or occur more frequently.

The most common ovarian cancer symptoms include:

1. Abdominal bloating
2. Pelvic or abdominal pain
3. Difficulty eating or feeling full quickly
4. Abnormal vaginal bleeding
5. Menstrual changes
6. Unexplained weight loss or weight gain
7. Nausea, diarrhea, constipation, frequent urination
8. Pain during sex
9. Loss of appetite
10. Fatigue
11. Back pain

Given the late onset of symptoms, Not These Ovaries emphasizes the importance of awareness, regular check-ups, and prompt medical attention if any of these symptoms persist. Our research efforts also focus on developing more effective early detection methods to improve outcomes for ovarian cancer patients.

What type of doctor should be consulted?

If ovarian cancer is suspected, a gynecologic oncologist — a specialist in cancers of the female reproductive system — should be consulted. They are experts in diagnosing and treating ovarian cancer.

Is there a screen or test to detect ovarian cancer?

Currently, there is no single, reliable screening test for ovarian cancer that’s recommended for the general population. This lack of an effective early detection method contributes to the challenges in diagnosing ovarian cancer at earlier, more treatable stages. Some available tests include:

1. Transvaginal ultrasound: This imaging test can help detect masses in the ovaries, but it can’t determine if these masses are cancerous or benign.
2. CA-125 blood test: This test measures levels of a protein often elevated in ovarian cancer. However, CA-125 can also be elevated due to other conditions, leading to potential false positives.
3. Pelvic exam: While part of routine gynecological care, this exam is typically not effective at detecting early-stage ovarian cancer.

A combination of these tests may be recommended for regular monitoring of high-risk individuals, such as those with a family history or genetic predisposition. At Not These Ovaries, we’re actively supporting research to develop more accurate and accessible screening methods, as early detection is crucial for improving ovarian cancer outcomes.

Which are the best hospitals in the United States for surgery?

Some of the top hospitals and health systems for ovarian cancer care in the US include:

1. Dana-Farber Cancer Institute in Boston, Massachusetts.
2. Memorial Sloan Kettering Cancer Center in New York City
3. MD Anderson Cancer Center in Houston, Texas
4. Cleveland Clinic in Cleveland, Ohio
5. The University of Chicago Medicine in Chicago, Illinois
6. Mayo Clinic (multiple locations)
7. Johns Hopkins Ovarian Cancer Center of Excellence in Baltimore, Maryland
8. UCSF Gynecologic Oncology Center in San Francisco, California

Can ovarian cancer be prevented?

The reality is that there are no definitive preventative measures for ovarian cancer. Unlike some other cancers, ovarian cancer lacks reliable early detection methods and proven prevention strategies, making it a particularly challenging disease to combat.

While certain factors like oral contraceptive use, pregnancy, and breastfeeding have been associated with lower risk, these are not preventative measures in the true sense. Even tubal ligation, which can reduce risk, is not a guarantee against the disease. Lifestyle factors such as maintaining a healthy weight and diet may offer some protective benefits, but their impact is limited.

The absence of effective prevention tools, coupled with the lack of early detection tests, means that ovarian cancer is often diagnosed at advanced stages when treatment options are more limited and less effective. This scenario underscores the critical need for increased funding and research:

1. To develop reliable early detection methods
2. To create true preventative strategies
3. To advance more effective treatments, especially for advanced-stage disease

At Not These Ovaries, our mission is to drive forward the research that could lead to breakthroughs in prevention, early detection, and treatment. The current landscape of ovarian cancer emphasizes why increased funding and focused research efforts are not just important — they’re absolutely crucial in the fight against this formidable disease.

How is ovarian cancer treated?

Surgery is often the first line of treatment for ovarian cancer. For early-stage cancers, surgery may involve removing one or both ovaries. In some cases, the uterus may also be removed (hysterectomy). For advanced ovarian cancer, more extensive surgery may be necessary, including the removal of affected lymph nodes, fallopian tubes, and biopsies of surrounding tissues.

Extensive surgery is frequently required due to the difficulty in detecting ovarian cancer at earlier stages. This late detection often necessitates more aggressive interventions. It’s important to note that such extensive surgeries can lead to a range of significant issues for patients, including:

1. Infertility
2. Early-onset menopause
3. Changes in body image and sexual function
4. Long-term physical and emotional impacts

At Not These Ovaries, we recognize the profound impact these treatments can have on patients’ lives. This underscores the urgency of our mission to fund research for better early detection methods and less invasive ovarian cancer treatment options, potentially reducing the need for such extensive surgeries in the future.

Are there cures other than surgery?

Chemotherapy may be given after surgery to eliminate any remaining cancer cells and reduce the risk of recurrence. In some cases, chemotherapy may be administered before surgery to shrink the tumor and make the surgery more successful.

Targeted therapy is a type of treatment that uses drugs to target specific genes, proteins, or the tissue environment that contributes to cancer growth and survival.

How many types of ovarian cancer are there?

Ovarian cancer encompasses several distinct types, primarily categorized based on their cellular origin. The three main categories are:

1. Epithelial tumors (approximately 90% of cases)
2. Germ cell tumors
3. Stromal tumors

Within these categories, there are various subtypes, including borderline tumors and low-grade serous ovarian cancer. It’s crucial to distinguish between high-grade ovarian cancers, which typically affect older women, and low-grade ovarian cancers, which often impact younger women.

At Not These Ovaries, we focus specifically on low-grade serous ovarian cancer and borderline tumors. This is a critical area of need, as there are currently no FDA-approved treatments for these subtypes. We recognize the importance of understanding each type’s unique characteristics to advance targeted research and improve treatment outcomes across the spectrum of ovarian cancers, with a particular emphasis on developing effective therapies for low-grade cases that existing treatment options have historically underserved.

What is the difference between high-grade and low-grade ovarian cancer?

High-grade and low-grade ovarian cancers differ significantly in their cellular characteristics and behavior:

High-grade ovarian cancer:

1. Exhibits rapid growth and spread
2. Features highly abnormal cell appearance
3. Generally more aggressive
4. Often initially responsive to chemotherapy but prone to recurrence
5. Primarily impacts older women, with the average age when diagnosed being 62.6 years old (NIH).

Low-grade ovarian cancer:

1. Characterized by slower growth
2. Cells appear more similar to normal tissue
3. It is less aggressive but can be challenging to treat
4. Often less responsive to standard chemotherapy protocols
5. Primarily impacts younger women, with a median age of 45, and as young as 19

Not These Ovaries is mainly focused on advancing research for low-grade serous ovarian cancer, an area that has historically received less attention in traditional research efforts. Our goal is to address the unique challenges presented by these tumors and develop more effective, targeted treatment strategies.​​​​​​​​​​​​​​​​

What happens post-treatment?

The post-treatment phase for ovarian cancer patients is a multi-faceted journey that extends well beyond the initial rounds of therapy. Typically, treatment begins with surgery followed by chemotherapy, which can span several months.

Following chemotherapy, many patients transition to maintenance therapies aimed at prolonging remission. These often include:

1. PARP inhibitors: These may be prescribed for extended periods.
2. Aromatase inhibitors: Often used for hormone-sensitive cancers, these can be part of a long-term treatment plan.

These medications, while crucial for managing the disease, can come with their own set of challenges and side effects that patients need to navigate. Throughout this period and beyond, patients engage in regular follow-up care, which often involves:

1. Scheduled checkups with oncologists
2. Blood tests, including CA-125 level monitoring
3. Periodic imaging scans
4. Physical examinations
5. Management of treatment-related effects

This ongoing care is essential for monitoring potential recurrence and addressing emerging health concerns. At Not These Ovaries, we recognize that the post-treatment phase represents a significant part of a patient’s cancer journey. Our research efforts aim to improve initial treatments and long-term care strategies, focusing on extending survival and enhancing the quality of life for ovarian cancer survivors.

Are support groups necessary?

An ovarian cancer diagnosis can trigger a wide range of emotions, including fear, anger, sadness, and anxiety. Joining a support group can provide valuable emotional support and help patients cope with the challenges of ovarian cancer. For example, young low-grade patients, in many cases, will enter menopause immediately and experience infertility. Groups allow patients to connect with others going through similar experiences.

What is the schedule for post-treatment checkups?

After treatment, patients typically have follow-up visits every 2-4 months for the first 2 years, then every 3-6 months for 3 years, and annually after 5 years if there are no signs of recurrence. The frequency varies based on the patient and the type of ovarian cancer.

How did Emily discover her cancer?

Emily’s path to diagnosis highlights the importance of persistence in healthcare. After experiencing symptoms, she consulted three doctors. The first two dismissed her concerns, but the third recognized the urgency and directed her to the ER for immediate evaluation. This experience underscores Not These Ovaries’ commitment to education and early detection advocacy.

What steps did she take to be cured?

Currently, there is no cure for ovarian cancer, which is precisely why our research funding is critical. Emily is presently in remission, a positive milestone in her journey. Our mission at Not These Ovaries is to transform the landscape from management to cure through targeted research and innovative treatments.

Why did Emily decide to start a charity?

Emily decided to start Not These Ovaries after her personal experience with ovarian cancer. When she was told she might have ovarian cancer, she and her husband, Chris, found the process of getting a diagnosis and treatment to be long, complicated, and painful. They struggled to navigate complex medical information, secure timely appointments, and deal with outdated processes.

Emily and Chris realized firsthand how little research and treatment options exist for ovarian cancer, particularly for the low-grade serous carcinoma (LGSOC) and borderline ovarian tumor (BOT) subtypes, which primarily impact younger women. This experience motivated them to start a charity funding research and trials to improve detection, treatment, and survival rates for ovarian cancer patients.

What do Emily and Chris hope to accomplish?

Through Not These Ovaries, Emily and Chris aim to make an immediate and significant impact on ovarian cancer research and patient support.

The mission is to fund clinical trials and support frontline researchers to catalyze annual improvements in ovarian cancer treatment and ultimately end the disease. A specific area of focus is funding research on borderline (BOT) and low-grade serous (LGSOC) subtypes, which have limited research behind them. NTO aims to improve ovarian cancer survival rates by funding research efforts that promote early detection, effective treatments, and a better understanding of disease progression.

Not These Ovaries also aims to provide patients with the information they need to navigate the complex diagnosis and treatment process. People with ovarian cancer and their families are facing the same challenges: how to quickly navigate a diagnosis, second opinions, and treatment options. It’s easy to get overwhelmed by the amount of non-actionable information found online. Emily and Chris want to help by ensuring access to unbiased, up-to-date information.

Overall, Emily and Chris hope to save lives through swift action, targeted research funding, and patient support.

How much money do they hope to raise?

Not These Ovaries has set an ambitious fundraising goal of $100 million. This substantial target reflects the scale of investment required to make significant strides in ovarian cancer research. These funds will be instrumental in initiating crucial studies, supporting innovative clinical trials, and accelerating progress toward more effective treatments and improved patient outcomes.

How much of the money donated is being spent on finding a cure?

We pride ourselves on our commitment to transparency and efficiency: 100% of donations go directly to research and trials. This approach ensures that every contribution, regardless of size, directly and meaningfully impacts our mission to advance ovarian cancer research and treatment options.

How do you fund operations of Not These Ovaries if 100% of donations go to fund research?

A group of patrons passionate about this research generously covers our marketing, operations, staff, and even the credit card fees of our public donors.

We believe this is the best model for building trust for a charity, and it is what sets us apart. Every donor knows exactly how much of their donation is being used. (Hint: it’s 100 percent).

For example, this separate patron fund covers all the credit card costs for public donors, so a $100 donation is really a $100 donation. This fund also covers the overhead for the Not These Ovaries team (most are unpaid volunteers), financial reporting and auditing, marketing, and building patient tools like our ovarian cancer doctor directory.

Which doctors and hospitals will be funded by Not These Ovaries?

Not These Ovaries is committed to funding research at leading institutions specializing in ovarian cancer care and research. While we don’t exclusively partner with specific doctors or hospitals, our focus is on supporting innovative studies and clinical trials at renowned cancer centers and supporting researchers across the United States.

These include, but are not limited to, institutions such as Dana-Farber Cancer Institute, Memorial Sloan Kettering Cancer Center, MD Anderson Cancer Center, and Johns Hopkins Ovarian Cancer Center of Excellence. Our goal is to collaborate with top researchers and clinicians wherever groundbreaking work is happening in the field of ovarian cancer, particularly in areas related to borderline and low-grade serous subtypes.​​​​​​​​​​​​​​​​

How often will you give research updates?

We maintain a balanced approach to donor communication. An annual report will be distributed to all donors, providing a comprehensive overview of our progress, key research milestones, and the tangible impact of contributions.

Additionally, we’re collaborating with our research partners to provide more frequent project-specific updates. The frequency of these updates will vary based on the nature and stage of each study, allowing us to share significant developments as they occur while respecting the scientific process.​​​​​​​​​​​​​​​​

Are you available for questions and answers?

Yes, you can contact our team directly for any questions, press, or speaking engagements. You can book time via our calendar app or….

Press Contact: Lois Whitman-Hess (917) 822-2591  loisw@hwhpr.com.

Disclaimer: This information is for educational purposes only and not a substitute for professional medical advice. Not These Ovaries, Inc. is not a medical provider. Always consult your physician for medical concerns.