Resource Center

The key to battling any serious illness is education. If you are a patient or a loved one searching for answers after a diagnosis of mucinous ovarian cancer (MOC), you might be feeling frustrated by how difficult information is to come by.

We get it. We’ve been there.

To help families learn more about the disease, we created this Resource Center. Our goal is to help families learn more about MOC, including what it is and why it’s so different. We also share links to research you might find insightful.

What Is Mucinous Ovarian Cancer (MOC)?

Mucinous ovarian cancer is a rare and distinct type of epithelial ovarian carcinoma (EOC). Tumors tend to be large, with a median diameter of 18 to 20 cm, or 7.087 to 7.874 inches.

In the past, MOC was often misdiagnosed as various types of gastrointestinal cancer, such as colon or pancreas. That’s because at an advanced stage, MOC can be difficult to distinguish from cancers that started elsewhere (colon, appendix, pancreas, stomach) and spread to the ovary.

This led researchers to believe 10%–15% of ovarian cancer diagnoses were MOC. In the last few years, however, the scientific community has gotten better at diagnosing MOC. Clearer criteria have resulted in a refinement in the number of cases. We now know that the number is actually 3% of all ovarian cancer diagnoses in the US, and 4%–5% worldwide.

Treatment typically involves both surgery to debulk the tumor and chemotherapy. Instead of standard ovarian cancer chemotherapy, gastrointestinal chemotherapy may be used. While there is no definitive evidence yet to prove how effective it is, researchers believe this treatment may be more suitable because the pathology of MOC aligns with gastrointestinal cancers.

Targeted therapy based on a patient’s personal tumor profile is also increasingly being explored for women with MOC.


As is true of any type of rare cancer, you may wish to seek a second opinion. Learn more about second opinions for mucinous ovarian cancer, including physicians to consider, here

Learn More About Mucinous Ovarian Cancer

We recognize much of the information found online is technical and tough to understand for patients who aren’t clinicians. One goal of the Coalition is to develop easy-to-read, downloadable resources. Look for our Resource Center to expand as the Coalition grows.

In the short-term, we encourage you to visit and review:

• Ovarian Cancer: Epithelial Ovarian Cancer: Created by the National Comprehensive Cancer Network (NCCN), an alliance of 28 cancer centers across the country, this step-by-step guide helps patients better understand their disease, from diagnosis to staging and treatment options. Written not just for MOC but for all types of epithelial ovarian cancer, it is a helpful tool that’s easy to read.

NCCN Downloable Guidelines

Research & Treatment

• Effects of Gastrointestinal-Type Chemotherapy in Women With Ovarian Mucinous Carcinoma: A retrospective study that reviews the outcomes for 52 women who received gastrointestinal-type chemotherapy versus a standard ovarian cancer regimen.

• More accurate diagnosis for rare ovarian cancer type on the cards, new research reveals: A great article on research that helped identify treatment markers for MOC, with hopes that further research can improve treatment options and patient outcomes.

• Does the primary site really matter? Profiling mucinous ovarian cancers of uncertain primary origin (MO-CUP) to personalise treatment and inform the design of clinical trials: This study looks at the genetic profiles of MOC and discusses the role targeted therapies may play in improving outcomes.

HIPEC seen as cutting-edge treatment for some cancer patients

Tools, Podcasts and Videos 

A Guide to CA-125 Levels: If you need help understanding what the CA-125 blood test is, and what the results mean, this is a great tool to download.
 
GI-based Chemotherapy in Ovarian Mucinous Cancers with Katherine Kurnit: Create a free account on Spotify and listen to a discussion of MOC in this podcast featuring Dr. Katherine Kurnit.
 
Understanding Gynecologic Cancer Clinical Trials: Patients and families who are considering a clinical trial will find this video helpful.

 Ovarian mucinous tumors: Primary or Metastasis?Excellent, short video presentation by Dr. Medeiros of Cedars-Sinai. Easy to follow and understand when you aren’t a clinician. 

Rare Ovarian Cancers: Dr. Amanda Nickles Fader, Director of the Center for Rare Gynecologic Cancers at The Johns Hopkins Hospital, discusses new research on and treatment of rare types of ovarian cancers, including mucinous ovarian cancer.

Rare Ovarian Cancers II: Dr. David Gershenson of MD Anderson Cancer Center discusses new research and treatment of rare types of ovarian cancer, including primary mucinous ovarian cancer.

Online Peer Communities 

The support of others who are walking a similar path offers numerous benefits. An online peer community may be the answer.
 
Inspire: Connect with fellow MOC patients and caregivers here. The site allows you to post messages on topics and get answers and support from peers.
 
Subscribe to the Coalition Newsletter
 

To stay updated as this Resource Center continues to grow, sign up for our newsletter. You’ll receive emails from us with timely information on research, treatment options, Coalition events, and more. And no worries about privacy. We will never share your contact information.


Resources for Cancer Patients & Caregivers

· Cancer Pain Control: Support for People With Cancer: Having cancer doesn’t necessarily mean you’ll have pain. But if you do, downloading this free booklet may help you understand how manage it using medication and other therapies.

· Cancer-Related Post-traumatic Stress (PDQ®): Being diagnosed with and living with cancer can create extreme anxiety and stress. It can lead to a condition known as Post-Traumatic Stress or PTS. Learn more about it in this online booklet.

· When Someone You Love Is Being Treated for Cancer: Support for Caregivers: Being a caregiver for a loved one who has cancer is a big responsibility. You may be juggling everything from physician appointments to medication schedules. During this time, it’s important that to remember to take care of yourself, too. This free guide can help.