Together We Can Learn About Livg w-out an Omentum

I am writing on behalf of my friend Meg Wilkinson, pictured above. 

She is a stage II ovarian cancer survivor who I had as a physical therapy patient several years ago.  She was complaining about persistent bloating and discomfort in her abdomen since her hysterectomy, omentectomy and six rounds of chemo.  As part of staging her cancer in 2014, her omentum removed. 

What is the omentum?? 
It is an “apron of fat” and an important part of the immune and lymphatic system.  Often times, it can collect and “hide” cancer cells, the reason why it is removed during cancer staging surgery.  However, because it is part of the lymphatic system and it helps to process excess fluid, its removal can lead to abdominal lymphedema, abdominal distension, and can also cause issues with proper digestion. 

POFCS
After some reflection, Meg decided to give this “triple play” of excess fluid under the skin, excess fluid in the abdominal cavity, and excess fluid in the digestive track a name: Post-Omentectomy Fluid Congestion Syndrome (POFCS).

Relief
Meg has seen and spoken to many practitioners regarding her symptoms since the removal of her omentum.  She has been able to determine which treatments have helped her be more comfortable and improve her quality of life, specifically, manual lymph drainage being one of them.  This is usually done by a certified lymphedema therapist.  This is how I met Meg.  I was one of her physical therapists who did this manual technique.  Another beneficial treatment for Meg was the application of Kinesio Tape directly on the abdomen.  This can help direct the flow of fluid back toward the heart and kidneys as well as take some stress off of tight, swollen abdominal tissues.  Exercising was another beneficial activity, especially activities that promote diaphragmatic breathing to increase the flow of excess lymph fluid back toward the heart such as yoga, Pilates, and swimming.  Lastly, eating strategically, including a close-to-the-ground eating style helped decrease the fluid collection in the digestive system. Over the past few years, Meg has not needed to continue seeing a lymphedema specialist, as she has learned to manage her POFCS effectively with these three strategies.

Anecdotal
Ovarian Cancer is one of the less common cancers, so Meg does not personally know many ovarian cancer survivors, but, of the few she does know, about half of them also experience digestive issues, post their cancer surgery.

Beyond Anecdotal
The goal of this project is to move beyond anecdotal, to a small, informal study. Megʼs goal with this study is to share the post-omentectomy practices and treatments which benefited her with other stage I and stage II ovarian cancer survivors and hopefully learn more about the applicability of these interventions to a wider group of ovarian cancer survivors; to see if this suite of three strategies help other ovarian cancer survivors the same way they have helped her. And, another goal of the project is to share the results of the study, hopefully, inspiring additional, more formal studies.

The Omentum Effect (TOE) Project: Helping Stage I/Stage II Ovarian Cancer Survivors Thrive
Together with a local team of volunteers she is working to raise funds to conduct an initial, informal study. The first step of the project will be to publicize the opportunity for local stage I/stage II ovarian cancer survivors to complete an online application to be one of the study participants. The team will select 30 ovarian cancer survivors from the applications to participate in the 12-week study at no cost to the individuals.  The hope is that the project will reveal some clues about the omentum that might lead to formal studies, academic research and information to improve the quality of life of survivors.  The study will focus on the suite of three interventions which have proven beneficial for Meg:

1.      Eat Strategically, including adopting a “Close-to-the-ground” eating style

2.      Exercise Daily, especially yoga, Pilates, and cardio exercise

3.      Employ Kinesiology tape

Data will be collected throughout the 12-week active intervention period and at intervals after completion; the data will be analyzed with the help of staff and students from a local academic institution.  Results will be communicated both through informal channels such as social media, and through more formal channels such as a press release.

30 Participants
Our hope, with your support, is that all participants will receive KT Tape, Garmin Vivosport fitness watches, personal trainer assessments, nutrition information, and kinesiology tape information, at no cost to them.  The goal is to raise enough funds to cover those interventions and to compensate the folks who will collect and analyze all the data during this period. The cost of the project will be $25,000.

Beyond the Study Project
Many ovarian cancer survivors complain of digestive issues. Information from this project has the potential to help many women, and also to help others who have had their omentum removed, including uterine cancer patients.

Please Contribute
Help us empower all ovarian cancer survivors!  Please help us improve these women’s lives and contribute to this project.  It took several years, patience, and persistence for Meg to find ways to feel better.  She is grateful that she has successfully found a way to live with POFCS; she wants to “give back” and bring information about these interventions to other survivors.  She is hoping survivors can learn more together, feel better, be healthier, and hopefully inspire more research in this area.  And, hopefully with your help, we can provide that.  Please consider donating to this great cause!  Any amount you can give would be greatly appreciated!!

Thank you!
Appreciatively, Meg's Physical Therapist

Watch for updates to this Go-Fund-Me page:
·         Partnership with a local academic institution in the Saratoga County region of NY;
·         Budget and Fund-raising updates;
·         Online application survey for ovarian cancer survivor participants;

More Information
More information on this project and Megʼs blog posts can be found at:
https://www.citizenscienceforovariancancer.org/ 
and
https://www.theomentumproject.org/