“I view this rare cancer diagnosis as a problem to be solved”

Founder of GCS Diane Redigton wins Remarkable Person prize at Live Better With’s Spotlight Awards

diane redigton rare cancer awareness
Diane Redington

A woman from Utah, who is trying to raise awareness for a rare gynaecological cancer, has been awarded one of our Remarkable Person prizes at the inaugural Spotlight Awards by Live Better With.

Diane Redigton has gynaecological carcinosarcoma (also known as GCS), a uterine-ovarian cancer that, because of its rare nature, has not been the subject of much medical research. Since her diagnosis, she has embarked upon an ambitious fundraising and educational campaign focused on finding a cure.

Diane is the founder of the GCS Project – it’s her hard work and dedication for this project that has led her to be awarded. 

We spoke to Diane to find out more about the project and how she feels to be a Spotlight Winner:

You were diagnosed with gynaecological carcinosarcoma two and a half years ago. How did you initially feel to not only be diagnosed with cancer but a rare one?

Being diagnosed with a rare and aggressive cancer is devastating. My first reaction was fear and grief. I thought I was going to die in 6 months. It took 3-4 months to have the epiphany that “I am not dead yet” and I decided that I need to start living with cancer and find a cure.

What is the GCS Project?

The mission of the GCS Project is to create a site for help and hope for women with Gynecological Carcinosarcoma (GCS) and to raise money for research to find treatments and cures for this rotten cancer.

Why did you set up the GCS Project?

I started the GCS Project for two reasons. The first reason was to provide a place for help and hope for other women diagnosed with this awful cancer. When first diagnosed, we all go to the internet and google ‘MMMT’ or ‘carcinosarcoma’. What we find is grim and very depressing. As I began this journey, I found that there were some things to be hopeful about and I wanted to share the hopeful information in a credible and scientifically valid way.

The second reason was to raise funds to support research. At that time, there was no research dedicated to this rare cancer. We GCS patients were on our own. So we found a group of very talented Harvard trained researchers at Mass General Hospital to take on this cancer. Our agreement was that we would raise the money and they would do the research. I wanted to share this hopeful information and encourage women to support the research.

What is your role within the project?

My most important role in this project is to raise awareness of the disease among the GYN Oncology Community in order to launch research to find cures. Equally important to me is to communicate with women with this terrible disease and their family members. I believe that as a community of GCS patients, we can achieve more than working alone. I want to offer help to women in the community to stay strong and help us work towards a cure.

Is it frustrating that rare cancers get less press coverage and research funding?

The reality is that GCS is a rare cancer. Hundreds of thousands of people are diagnosed with breast/lung/prostate cancer every year. Less than a thousand women each year are diagnosed with GCS. With scarce research dollars, it is very clear that public dollars should be allocated to where they will do the greatest good. I don’t begrudge that. However, those of us with rare cancers much be our own advocates and we must pursue research dollars to fund cures for our cancers whether through private philanthropy of scarce public money. That is just the way it is with scarce resources.

How has your life changed since your diagnosis?  

I was diagnosed on April 17, 2015 and my life has never been the same. I was a Family Nurse Practitioner working in a clinic for the underinsured and I loved my job. After my diagnoses, I retired from my job and began a national search for a treatment team whom could help me. I found very little expertise in my cancer even among the major cancer centres. Now, the GCS Project is where I dedicate my time and efforts. I have a high quality of life and I am able to travel and advocate to find treatments and cures. That is what drives me now. I am very blessed with a phenomenal support team comprised of family and friends without whom I would not be able to do this work.

What have you learned from your cancer diagnosis?

I am not one of those people who say that “cancer is a gift”. My feeling is that “You have to play the hand you are dealt”. I view this cancer diagnosis as a problem to be solved. A big problem, but nevertheless, one that needs my full attention. I have also learned that by building a GCS Community, we can accomplish more than doing it on our own. So I live each day as it comes and try to be as productive as I can knowing that once the day is gone, I’ll never get it back again. I do things that bring me joy and by doing so I live a joyful life.

How does it feel to know that you were not only nominated but won the Remarkable Person Award for your relentless campaigning?

I am both stunned and honoured to win this award. I do not do things to win awards, but to receive recognition for this work in very humbling. I hope this award will bring more attention to what we are doing and help us to achieve our goal to find a cure for this malicious disease. I am very grateful and I want to thank the judges for selecting me.

rare cancer

The first of its kind, the Spotlight Awards shine a light on the achievements of truly remarkable people, products, and services in the cancer community. Nominated by the public, and voted by a panel of expert judges, the winners are from all walks of life, of all ages, and from across the world.

The Spotlight Awards have been organised by Live Better With, an award-winning online platform where cancer patients and their loved ones can find products and information to help with the symptoms and side effects of living with cancer.

See the full list of Spotlight Award winners here.

 

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