Thursday, March 26, 2015

She Has Lynch Syndrome

March is Colorectal Cancer Awareness month. Lynch syndrome also called hereditary nonpolyposis colorectal cancer (HNPCC) is associated with colorectal cancer but many are unaware that the syndrome is also associated with endometrial cancer and ovarian cancer. Women with Lynch syndrome have a 21-71% risk of endometrial cancer and a 3-14 % risk of ovarian cancer. Additional information regarding surveillance, risk reducing surgery, etc. may be found on the Up To Date website at:

Georgia Hurst, who was diagnosed with Lynch syndrome in 2011, is an advocate, daughter and sister of colon cancer survivors. She choose to have risk reducing surgery and following that experience started writing the I Have Lynch Syndrome website. The website's mission is "to address the possible plethora of emotional implications of a Lynch diagnosis and to encourage those that may at be at high risk to get genetically tested." We are happy to share a blog post written by Georgia for her blog in June 2013.

Christina and I would like to thank Georgia for her support of the #gyncsm community.

How to be happy after a Lynch diagnosis

I got slapped with my Lynch diagnosis on May 17, 2011. I had my radical hysterectomy on June 10, 2011 and spent the last couple years trying to figure out how to reconcile living with this emotional aspects of this genetic monster. I had to undergo lots of therapy, meds, acupuncture, meditation, books, spending time with friends, exercising, and participating in life affirming activities in order to start feeling better.

Lynch is not something you can only fret about during your annual screenings; it’s something that you must be mindful of every day. Most things I do are for my betterment, to improve or sustain my good health, and if it’s not good for me physically or emotionally, then it doesn’t get to be in my life.
Here is my list of things to do to live a happy life following a Lynch diagnosis.

1. Decide what prophylactic measures you will take/or not and then deal with that. I felt the need to take control immediately following my diagnosis and scheduled my hysterectomy. Learn all you can about Lynch; become your own health advocate and get screened religiously.

2.  Think about most things that you put into your mouth. Will it nourish you or eventually end up destroying you? Do you need to alter your diet and include more fruits and veggies and less animal products? Your diet does play a role in cancer’s development. Drink more green smoothies and be sure to incorporate things such as kale, spinach, green apples, green tea, and chia seeds into your diet. Let thy food be thy medicine!

3. Workout at least five days a week. I’ve been running for years but now I need it more than ever; first for the endorphins, second because I want to be as trim and fit as possible. Lift weights –  for me, physical strength holds implications for my mental strength. You must make exercise a priority in your life. Period.

4. Spend time with people who teach you, nourish you, love you, and are willing to listen to you. Get rid of the toxic people in your life – you have enough crap to deal with – eliminate them and make room for more positive people in your life.

5. Spend time cultivating your spirituality. I meditate – a lot, usually for an hour. Pray, meditate, whatever it is that you do and do it more frequently. Talk to yourself and tell yourself that you’re healthy, strong, and that you will not allow for cancer to manifest itself into your body. Breathe deeply. Repeat.

6. Read books about death and happiness. It’s amazing what profound words some books have written in them. I’m partial to Buddhist philosophy; it’s helped me immensely with dealing with my death anxiety. Also, reading about other people’s life issues provides you with perspective on your own life and makes you realize how fortunate you are in many ways.

7. Spend time in nature. Go for a walk, go to the beach, garden, spend more time outside. It works wonders for the soul.

8. Do at least one thing that makes you feel good every day. Period.

9. Cater to your inner child. Do things you’ve always wanted to do and keep putting off. I recently built an eight foot teepee in my basement – I’ve always wanted one since I was a kid. Are you going to wait until you’re sick and old to do them? Do them now.

10. Express gratitude, every day. Count the things that you’re grateful for and remember there is someone always worse off than you.

11. Limit your time on FB Lynch and cancer platforms. They can be highly depressing and cause your optimism regarding your own health to wane. You know you have Lynch and can take preventative measures to fight it; many of those who are suffering from cancer did not know they had Lynch until it was too late. Keep that in mind when reading their stories. You’re one of the lucky ones!

12. Make your home your sanctuary; I have peaceful looking Buddhas about the house, upbeat music playing, candles burning, and flowers in my home. It’s hard to be depressed in a lovely, calm environment.

13. Have something to take care of every day. Adopt a dog or cat from the shelter. Get a fish. Get some plants. Having living things that need to be cared for by you gives you more purpose.

14.  Leave your mark and/or create something. Do something that makes you feel as though you’ve made a difference. You don’t need to win the Noble Peace Prize, but do something you can be proud of; for me it’s been this blog and my advocacy work.

15. Connect with others who have Lynch and are not sick. Just remember, you’re not alone. If you can’t find anyone else, zap me an email, I’d be happy to talk to you.

16. Stop worrying about others in your family and whether or not they’ll be screened. You cannot control anyone but yourself. All you can do is set an example for them.

17. Be happy; if you’re doing every thing you can, exhausting all of your options, getting screened, and taking care of yourself, you should gain some solace from all of this.

And she’s off.

#gyncsm Co-moderator

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