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11: Lynch Syndrome, and Genetic Testing and Counseling, With Georgia Hurst and Ellen Matloff

Georgia Hurst1

I Have Lynch Syndrome, Inc founder, Georgia Hurst

Georgia Hurst is the founder of I Have Lynch Syndrome, Inc. As stated on her website

The mission of I Have Lynch Syndrome, Inc., is to save lives through education and awareness raising about Lynch among the global medical community and the general public.

Ellen Matloff is the President and CEO of My Gene Counsel.   “My Gene Counsel will translate the jargon behind the latest breakthrough on the evening news and tell you what it really means for you and your family.”

During this podcast, Georgia and Ellen discuss the impact that Lynch syndrome can have on those affected by it and the importance of knowing your family medical history. The also educate us on the world of genetic testing and counseling.

What I Learned From Georgia Hurst and Ellen Matloff

  • Know your family medical history!

    • Speak with the older members of your family and create a family tree that lists as many family members as possible. List their age, any serious medical condition, and their age when they passed away, if applicable. Keep this document with other important documents.

  • If you have a tumor surgically removed, ask your doctor to order M.S.I. (Micro Satellite Instability) or immunohistochemistry testing on the tumor to determine if there are any genetic mutations.

  • Though not right for all cases, genetic testing should always be discussed with your oncologist. If you need assistance, or more information, visit the National Society of Genetic Counselors website, or contact My Gene Counsel.

Important Links:

IHaveLynchSyndrome.com:

IHLS

Find Georgia Hurst on Twitter: @SheWithLynch

My Gene Counsel

Find Ellen Hurst on Twitter: @MyGeneCounsel

10: Conquering the Psychological Effects of Colon Cancer, with Ed Yakacki III

Ed Yakacki III

Conquering the Psychological Effects of Colon Cancer, With Ed Yakacki III

Ed Yakacki III was diagnosed with colon cancer at the young age of 30. Ed faced two battles; conquering the physical effects of colon cancer, and conquering the psychological effects of colon cancer after treatment. Trying to go back to a “normal” life after treatment is a serious issue for many cancer survivors. Like many survivors, Ed struggled to find meaning to his life after completing his colon cancer treatment. Ed battled several issues including depression. Participating in the Philadelphia Undy 5K run was the impetus for his transition from survivor to “thrivor.”

What I Learned from Ed Yakacki III

  • It will take time to find your “new” normal after your colon cancer treatment is over.

    • Be gentle with yourself. You’ve been through a traumatic experience. The things that were important to you before treatment may no longer matter to you now. Your values will likely change as a result of your experience.

  • When you struggle to pick yourself up, let others lift you up.

    • Ed credits the wonderful people he met at the Philadelphia Undy, with helping him to find meaning in his post-treatment life.

  • One person can make their voice heard.

Check out Ed’s Facebook page, Fightin4Blue

Visit Ed’s Fightin4Blue website

Check out Ed’s TV appearance:

 

 

 

9: From Swimsuit Model to Colon Cancer Survivor and Advocate, with Grace De La Rosa

Grace De La Rosa

Grace De La Rosa – Colon Cancer Survivor and Advocate

Grace De La Rosa is a colon cancer survivor and works tirelessly advocating for colon cancer related issues. She has always made her health and well-being one of the priorities in her life. A swimwear and fitness model, and fitness competitor, exercise and healthy eating have always been a part of her lifestyle, yet at age 38, she was diagnosed with stage 3c colon cancer.

What I Learned From Grace De La Rosa

  • Know your body and don’t ignore the possible symptoms of colon cancer.
    • You know your body. When you sense something has changed and is not right, let your doctor know.
  • One person can make a difference.
  • One person can make their voice heard.
    • Grace has appeared on TV, in the newspaper and has made numerous speaking engagements, where she has shared her story. She was also instrumental in getting Florida Governor, Rick Scott, to declare Florida a “Blue State” in support of Colon Cancer Awareness Month.

Listen to Grace tell her story:

 

 

8: Living Life With a Hereditary Colon Cancer Syndrome, with Travis Bray, PhD.

Travis & Shawnie It Takes Guts shirts

Shawnie and Travis Bray, PhD. – Hereditary Colon Cancer Foundation

Like his grandfather and father before him, Travis Bray was born with F.A.P. – Familial Adenomatous Polyposis – “a rare, hereditary colon cancer syndrome that causes extra tissue (polyps) to form in the large intestine and in the upper part of your small intestine (duodenum).” The vast majority of people with F.A.P. will be stricken with colon cancer in their early thirties.

In July of 2012, Travis and his wife Shawnie founded the Hereditary Colon Cancer Foundation.

What I Learned From Travis H. Bray, PhD.

  • With screening and proper treatment, people diagnosed with F.A.P. can lead a normal life.

    • Being diagnosed with F.A.P. is not a death sentence.

  • Know your family health history before it becomes necessary.

    • Travis knew that both his grandfather and father had died from colon cancer and were carriers of the F.A.P. gene. He began to be screened in his early teens.

  • Live life to its fullest.

    • Travis makes it a priority to make every day a great day. He constantly evaluates his priorities, and where and how he spends his time. There’s no room in his life for negativity.

Learn more about Dr. Travis Bray and F.A.P.:

 

Learn more about The Hereditary Colon Cancer Foundation by visiting their website: HCCTakesGuts.org

7: “It’s Not Harder Than Cancer” – With Author, Michael Holtz

Michael Holtz

Michael Holtz – “It’s Not Harder Than Cancer”

Michael Holtz is a stage 3 colon cancer survivor and author of the new book, It’s Not Harder Than Cancer. During our conversation, Michael talks about his career with the American Cancer Society, and how his personal experience with colon cancer, compelled him to make a career change and leave the American Cancer Society. Disagreeing with those who call their own experience with cancer, “a gift” (he said it’s a gift he would like to return), he does acknowledge how his experience with the disease has resulted in new friendships, a stronger marriage and a greater focus on gratitude for even the smallest things life has given him.

What I Learned From Michael Holtz

  • You can live a normal life with a colostomy.

    • Michael recently completed a 26.2 mile marathon!

  • Surviving cancer can impact your life in a positive way.

    • Michael has experienced new friendships, new career opportunities and stronger personal relationships since conquering colon cancer.

  • Your friends & family “portrait” after cancer will not look the same as the one before your illness.

    • A common theme; some friends and family will vanish into the shadows during your illness, only to be replaced by people you weren’t expecting to be there for you.

Links for Michael Holtz:

Michael’s website: Michael Holtz Online

Buy Michael’s Book on Amazon.com: “It’s Not Harder Than Cancer”

6: Living Life With a Colostomy, With Tony Pace

Lving life with a colostomy - Tony PaceStage 4 Colon Cancer survivor, Tony Pace, made a life-changing and brave decision after completing a very difficult journey through his treatment.

After bladder reconstruction surgery, a partial colectomy, a partial hepatectomy, followed by chemotherapy, he made the decision to have a permanent colostomy.

During his quarterly colonoscopies, his doctor would remove between 6 – 8 polyps. This continued for over a year and a half. Tony was concerned about both the risk of a tear each time polyps were removed, and the risk that a potentially cancerous polyp may be overlooked. These were chances that Tony no longer wanted to take; hence, the decision to have a permanent colostomy.

What I Learned From Tony Pace

  • It’s your body and your life

    • Make the decisions on your medical care that are right for you.

  • You can lead an “almost” normal life with a permanent colostomy

    • Tony works in a physically demanded job. While he has had to make some minor adjustments to his daily routine, he continues to lead a very active lifestyle.

  • Attitude is everything! Tony has a terrific sense of humor and a great outlook on life.

    • My favorite quote from Tony is “Never take things too seriously and learn to laugh. You don’t have control over most things that happen to you on this journey.”

5: You’re Never Too Young for Colon Cancer, with Dawn Eicher

Dawn Eicher

Dawn Eicher

For years, Dawn Eicher was told by doctors, despite obvious symptoms,  that she was too young to have colon cancer. While pregnant with her 2nd child, her symptoms worsened. Her doctors told her it was pregnancy related, gave her suppositories, and sent her home. It took 10 more months before she would finally receive a colonoscopy at which time she was diagnosed with stage 4 colon cancer with metastases to her liver. Dawn was only 36 years old.

Faced with a very difficult treatment plan including multiple surgeries, chemotherapy, radiation and a temporary ileostomy, Dawn forged ahead. It has been close to a year since she completed her treatment and Dawn is NED – No Evidence of Disease. She is now fighting hard to let people know “You’re Never Too Young” for colon cancer. She has started a petition through Change.org to force insurance companies to make colon cancer screening more accessible to younger people.

What I Learned From Dawn Eicher

  • Be your own advocate!

    • Nobody knows your body better than you do. If something isn’t right, tell your doctor. If your doctor won’t listen, find one who will.

  • One person can affect change.

    • In less than 90 days, Dawn  was able to get over 70,000 signatures on her petition she’s sending to congress.

  • Attitude is everything!

    • Many people would be angry and bitter after experiencing what Dawn went through. She chooses to be positive and channel her energy for change.

 How you can help make a difference:

Sign The Petition! “You’re Never Too Young”

 

 

4: Raising Awareness About Colon Cancer in a Most Unique Way, With Ben DeHan and Dustin Brians

Working to increase colon cancer awareness

Dustin Brians and Ben DeHan

Ben Dehan and Dustin Brians are two good friends that were searching for a way to make a positive impact in the colon cancer community. They wanted to bring more visibility to the cancer, that in their words, is “the cancer no one wants to talk about.” Their project, the Buttfolio, will certainly get people talking!

To learn more about their project, visit thebuttfolio.com.

3: Taking Charge of Your Colon Cancer Treatment, With Sue Kidera

Sue Kidera - Stage 4 Colon Cancer Survivor

Sue Kidera

Cancer has been the most horrible and wonderful thing that has ever happened to me, because it taught me how to live a life uncommon.

This quote from stage 4 colon cancer survivor, Sue Kidera, beautifully describes her ongoing battle with colon cancer. Through multiple surgeries, chemotherapy treatments, Stereotactic Body Radiation Therapy (S.B.R.T.), and currently the TAS-102 clinical trial, Sue continues her courageous battle to beat this disease.

Listen to our conversation and learn how Sue has taken the lead role in her treatment plan and the peace and serenity she has found as a member of the Naiades Oncology Rowing Team.

2: Founder of National “Dress in Blue Day,” Anita Mitchell

Anita Mitchell Isler - Stage 4 Colon Cancer Survivor

Anita Mitchell Isler

In this episode, I have the pleasure of interviewing Anita Mitchell Isler, a stage 4 colon cancer survivor and the woman who founded “Dress in Blue Day.” Anita is also the founder of  Colon STARS,  a non-profit organization who’s mission is to save lives by educating people on the importance of colorectal cancer screening.

Join me as Anita shares her story of beating stage 4 colon cancer and how that motivated her to work tirelessly to make a difference in the lives of people affected by colon cancer in the Seattle, Washington area and across North America.

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