Patient Stories

Module 1: Understanding Ovarian Cancer

Ariana’s story: How did you find out you had ovarian cancer?
Ariana’s story: How did you find out you had ovarian cancer?
Ariana describes the symptoms and experiences she had leading up to her diagnosis of ovarian cancer at the young age of 17.
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Beatrice’s story: How did you find out you had ovarian cancer?
Beatrice’s story: How did you find out you had ovarian cancer?
Beatrice describes the symptoms and experiences she had leading up to her diagnosis of ovarian cancer.
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Shirley’s story: How did you find out you had ovarian cancer?
Shirley’s story: How did you find out you had ovarian cancer?
Shirley describes the symptoms and experiences she had leading up to her initial diagnosis of ovarian cancer.
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Ariana’s story: What advice do you have for other patients on their journey with ovarian cancer?
Ariana’s story: What advice do you have for other patients on their journey with ovarian cancer?
Ariana shares practical advice for younger women with ovarian cancer. She says it is important to reach out for support and to talk to survivors about their treatment and surgery experiences. She encourages young women to pay very close attention to their bodies and to seek immediate medical attention if they notice any signs or symptoms that don't feel right or look right.
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Beatrice’s story: What advice do you have for other patients on their journey with ovarian cancer?
Beatrice’s story: What advice do you have for other patients on their journey with ovarian cancer?
Beatrice shares practical advice for other patients on their journey with ovarian cancer. She recommends staying as healthy as possible and working closely with your doctor on your treatment plan. When visiting the doctor, she recommends writing down questions beforehand, and not being shy to ask questions.
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Shirley’s story: What advice do you have for other patients on their journey with ovarian cancer?
Shirley’s story: What advice do you have for other patients on their journey with ovarian cancer?
Shirley shares her experiences and advice for other people on their journey with ovarian cancer. She emphasizes the importance of having a healthcare team you can trust, and having a caregiver join you at medical appointments to take notes. Shirley's 11 years with ovarian cancer have been a long and hard battle, but she will always keep fighting. Participating in a peer support program has helped her immensely and she encourages others to join support programs for connection with like-minded people.
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Module 2: Diagnosing Ovarian Cancer

Shirley's story: How was your ovarian cancer diagnosed?
Shirley's story: How was your ovarian cancer diagnosed?
Shirley describes her ovarian cancer diagnosis experience, which required immediate surgery. Shirley's ovarian cancer diagnosis came as a huge shock to her and her family. She shares her story in the hope of encouraging other women to act on unusual symptoms quickly.
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Shirley's story: How was your ovarian cancer recurrence diagnosed?
Shirley's story: How was your ovarian cancer recurrence diagnosed?
Shirley describes how her ovarian cancer recurrence was diagnosed. She talks about the ongoing monitoring she receives, which includes regular CA-125 blood testing, as well as CT and PET scans. Shirley has had a few recurrences and shares her story in the hope that it will help other women with ovarian cancer.
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Ariana's story: What challenges did you face as a young woman with ovarian cancer?
Ariana's story: What challenges did you face as a young woman with ovarian cancer?
Ariana reflects on the unique experiences and challenges she faced when she was diagnosed with ovarian cancer at the young age of 17. She talks about the emotional impact of her rare diagnosis, and the unique treatment and surgery decisions she faced at such a young age. Ariana shares her story in the hope that it will help other young women with ovarian cancer.
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Ariana's story: What has been your experience with genetic testing for ovarian cancer?
Ariana's story: What has been your experience with genetic testing for ovarian cancer?
Ariana describes her experiences with genetic testing for ovarian cancer, and her family history of the rare DICER1 genetic mutation. Other members of her family have also undergone genetic testing to be proactive in preventing and monitoring for ovarian cancer. She shares her story in the hope that it will help other women with rare genetic mutations.
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Module 3: Treating and Managing Ovarian Cancer

Ariana’s story: What successes and challenges have you had with your ovarian cancer treatment?
Ariana’s story: What successes and challenges have you had with your ovarian cancer treatment?
Ariana describes the treatment successes and challenges she faced when she was diagnosed with ovarian cancer at the age of 17. She talks about the surgery and chemotherapy she received, as well as the physical and emotional toll of her treatment journey at such a young age. She shares her story in the hope that it will help other young women with ovarian cancer.
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Beatrice’s story: What successes and challenges have you had with your ovarian cancer treatment?
Beatrice’s story: What successes and challenges have you had with your ovarian cancer treatment?
Beatrice talks about the successes and challenges of her ovarian cancer journey so far. She reflects on the meaningful connections and friendships she has made through participating in fundraising walks and being part of the NOCC community. She encourages others to join support programs to connect with like-minded people.
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Shirley’s story: What successes and challenges have you had with your ovarian cancer treatment?
Shirley’s story: What successes and challenges have you had with your ovarian cancer treatment?
Shirley describes the successes and challenges she has faced with her ovarian cancer treatments, and shares some of the ways she has coped. Shirley has had a few recurrences of ovarian cancer since her initial diagnosis. She talks about the physical and emotional toll of the treatments and rounds of chemotherapy. She reflects on the importance of persevering, even in the hardest times. The incredible support from her husband and healthcare team has helped her get through.
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Ariana’s story: What was your experience with surgery for your ovarian cancer?
Ariana’s story: What was your experience with surgery for your ovarian cancer?
Ariana reflects on the experiences she had with surgery when she was diagnosed with ovarian cancer at the young age of 17. She had fertility-sparing surgery, to spare her uterus and one ovary. Now 20 years later, she shares her perspective in the hope that it will help other young women with ovarian cancer discuss surgical options with their doctors.
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Beatrice’s story: What has been the biggest challenge for you with ovarian cancer?
Beatrice’s story: What has been the biggest challenge for you with ovarian cancer?
Beatrice reflects on the challenges of her ovarian cancer diagnosis through the years, including managing symptoms such as neuropathy. She emphasizes that every woman's ovarian cancer journey is different, therefore she encourages others to talk with their doctors about developing a care plan based on their unique ovarian cancer experience.
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Shirley’s story: What has been the biggest challenge for you with ovarian cancer?
Shirley’s story: What has been the biggest challenge for you with ovarian cancer?
Shirley reflects on the challenges of her ovarian cancer journey so far, which includes staying positive and the impact of her diagnosis on her husband and family. She is determined to persevere and is extremely grateful to her healthcare team. She shares her story in the hope that it will help other women with ovarian cancer.
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Module 4: Understanding Clinical Trials in Ovarian Cancer

Angie's story: Why did you decide to take part in a clinical trial for your ovarian cancer?
Angie's story: Why did you decide to take part in a clinical trial for your ovarian cancer?
Angie shares her personal story of why she decided to participate in a clinical trial when her ovarian cancer recurred. She says she did quite well throughout the 14 months she participated in the trial, despite experiencing side effects of fatigue.
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Kim's story: Why did you decide to take part in a clinical trial for your ovarian cancer?
Kim's story: Why did you decide to take part in a clinical trial for your ovarian cancer?
Kim, a survivor of ovarian cancer for more than 9 years, explains why she decided to participate in a clinical trial when her cancer recurred and after having a discussion with her oncologist. She also describes some of the experiences she had in the trial.
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Angie's story: How did you enroll in the ovarian cancer clinical trial? What was the process like?
Angie's story: How did you enroll in the ovarian cancer clinical trial? What was the process like?
Angie discusses the process of how she enrolled in an ovarian cancer clinical trial, including the discussions she had with her oncologist and the trial coordinator about the trial design, the drugs that would be received, possible side effects, and the follow-ups that would be scheduled. She describes how the enrolment process was smooth, professional, and completed in a couple of hours.
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Alicia’s story: What was your overall experience in the ovarian cancer clinical trial?
Alicia’s story: What was your overall experience in the ovarian cancer clinical trial?
Alicia shares her overall experience in the ovarian cancer clinical trial. She is cared for by a very supportive healthcare team that always monitors and checks in on her. They helped her manage the side effects she experienced when she first started the trial. Alicia has been in the trial for the past four years with no evidence of new disease. She says it has been worth every minute and she feels very lucky.
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Angie's story: What was your overall experience during and after the ovarian cancer clinical trial?
Angie's story: What was your overall experience during and after the ovarian cancer clinical trial?
Angie describes her experiences during and after participating in the ovarian cancer clinical trial, including the expert care and attention she received from the medical team. She has no regrets about participating and would be glad to do it again.
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Kim's story: What was your overall experience during and after the ovarian cancer clinical trial?
Kim's story: What was your overall experience during and after the ovarian cancer clinical trial?
Kim explains that during her time in the ovarian cancer clinical trial she received a lot of expert care and attention from her medical team. There were occasions when she took a break from the trial, but for the most part, she felt normal and healthy during the trial. While she did develop some sun sensitivity as a side effect, the care she received was very reassuring, comforting, and accommodated her schedule.
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Alicia’s story: How did genetic and biomarker testing impact your options for ovarian cancer clinical trials?
Alicia’s story: How did genetic and biomarker testing impact your options for ovarian cancer clinical trials?
Alicia describes how genetic and biomarker testing has significantly impacted the treatment of her ovarian cancer because the results have opened doors for clinical trial participation. She qualified for a clinical trial focused on BRCA-negative, HRD-positive patients. Alicia shares that her ongoing experience in the trial has been great and that she has a lot of confidence in it, as her cancer has not recurred in 4 years.
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Alicia’s story: What advice do you have for others about taking part in clinical trials for ovarian cancer?
Alicia’s story: What advice do you have for others about taking part in clinical trials for ovarian cancer?
Alicia shares advice for others who may want to take part in a clinical trial for ovarian cancer. She says that participating in a clinical trial was the best thing she ever did and has been a positive way to give back to the ovarian cancer community. She shares her advice in the hope that it will help other women with ovarian cancer.
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Angie's story: What advice do you have for others about taking part in clinical trials for ovarian cancer?
Angie's story: What advice do you have for others about taking part in clinical trials for ovarian cancer?
Angie shares her advice for other women with ovarian cancer who are thinking about taking part in clinical trials. She believes clinical trials are a great way to seek treatment beyond the current standard of care and encourages others to seriously think about clinical trial participation.
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Kim's story: What advice do you have for others about taking part in clinical trials for ovarian cancer?
Kim's story: What advice do you have for others about taking part in clinical trials for ovarian cancer?
Kim shares some advice to other women who may be thinking about taking part in a clinical trial for ovarian cancer. She strongly encourages others to consider participation if a clinical trial is available and offered. She emphasizes on the importance of clinical trials in progressing our scientific understanding and treatment of ovarian cancer.
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Angie's story: How has the National Ovarian Cancer Coalition helped you on your cancer journey?
Angie's story: How has the National Ovarian Cancer Coalition helped you on your cancer journey?
Angie describes how the National Ovarian Cancer Coalition (NOCC) has helped her on her journey with ovarian cancer and strongly encourages others to utilize the educational resources and support provided by the NOCC.
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Module 5: Genetic Mutations and Biomarkers in Ovarian Cancer

Ariana's story: What has been your experience with genetic testing for ovarian cancer?
Ariana's story: What has been your experience with genetic testing for ovarian cancer?
Ariana describes her experiences with genetic testing for ovarian cancer, and her family history of the rare DICER1 genetic mutation. Other members of her family have also undergone genetic testing to be proactive in preventing and monitoring for ovarian cancer. She shares her story in the hope that it will help other women with rare genetic mutations.
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Alicia’s story: What genetic mutations do you have? When and how were you tested?
Alicia’s story: What genetic mutations do you have? When and how were you tested?
Alicia talks about the experiences she had with genetic and biomarker testing following her ovarian cancer diagnosis and recurrences. The tests she had revealed she was BRCA-negative and HRD-positive (homologous recombination deficiency). She found it reassuring to have her testing done and shares her story in the hope that it will help other women with ovarian cancer.
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Alicia’s story: What was the genetic testing and biomarker testing process like?
Alicia’s story: What was the genetic testing and biomarker testing process like?
Alicia describes the experiences she had with genetic testing and biomarker testing for her ovarian cancer. The medical team explained the process to her thoroughly so that she understood what she was going to learn and how it would impact her treatment options.
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Angie’s story: How did genetic testing and biomarker testing impact the treatment of your ovarian cancer?
Angie’s story: How did genetic testing and biomarker testing impact the treatment of your ovarian cancer?
Angie describes the impact her genetic testing and biomarker testing had on her ovarian cancer treatment. The testing helped to identify specific PARP inhibitor treatment for her BRCA-negative status.
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Alicia’s story: How did genetic and biomarker testing impact your options for ovarian cancer clinical trials?
Alicia’s story: How did genetic and biomarker testing impact your options for ovarian cancer clinical trials?
Alicia describes how genetic and biomarker testing has significantly impacted the treatment of her ovarian cancer because the results have opened doors for clinical trial participation. She qualified for a clinical trial focused on BRCA-negative, HRD-positive patients. Alicia shares that her ongoing experience in the trial has been great and that she has a lot of confidence in it, as her cancer has not recurred in 4 years.
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Alicia’s story: What advice do you have for others about genetic and biomarker testing for ovarian cancer?
Alicia’s story: What advice do you have for others about genetic and biomarker testing for ovarian cancer?
Alicia shares advice about genetic testing and biomarker testing for other patients with ovarian cancer. She encourages others to talk to their doctors about testing because the more you know, the more treatment options you'll have. For Alicia, her biomarker test results opened doors for her to participate in clinical trials.
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Angie’s story: What advice do you have for others about genetic and biomarker testing for ovarian cancer?
Angie’s story: What advice do you have for others about genetic and biomarker testing for ovarian cancer?
Angie shares her personal advice about genetic testing and biomarker testing for ovarian cancer. She encourages testing because the results can help identify specific treatment options and also help family members understand risk.
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This educational activity has been developed by the National Ovarian Cancer Coalition in collaboration with Mechanisms in Medicine Inc.

This activity is supported by educational grants from:
Alkermes plc, AstraZeneca Pharmaceuticals LP, Clovis Oncology, Inc., Eisai Inc., Foundation Medicine, Inc., Genentech, a Member of the Roche Group, GSK, ImmunoGen, Inc., Merck & Co, Inc., Novartis, Novocure Inc., Pfizer, Inc.

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