TWITs

This Week in Tweets

This Week in Tweets

Introducing…”This Week in Tweets.”

Occasionally I find a tweet (or two or three or more) in my Twitter stream that I feel merits a discussion that’s longer than 140 characters. From time to time I’ll round them up (along with my thoughts) and share them on Mutant Me. Welcome to the first edition of TWITs!

Ever find the statistics for CRC (and related cancer) risk in Lynchies to be overwhelming and difficult to understand? I discovered this excellent resource while exploring tweets from Kintalk.org. “Cancer Risks in Lynch Syndrome” lays everything out on the page in a tidy set of statistics organized by mutation, cancer type, gender (where applicable,) and age. AND, as an added bonus, they list the most common symptoms of colorectal, endometrial (uterine) and ovarian cancers at the end of the report. Vital information in a simple format. Thank you Kintalk! (Oh, and follow the link at the bottom of that page to “Managing Lynch Syndrome.” It’s not to be missed.)

Stop Colon Cancer Now has put together a helpful Myths vs. Facts list for colon cancer. A few of the myths were new (and surprising) to me… “colon cancer is a disease that only effects Caucasian males” and “all methods for colon cancer screening are equally effective,” while others were myths I’ve heard far too often, such as, “a polyp means cancer,” and “if I have colon cancer it means I’m dying.” There are eleven myths in all, and they’re disproved/addressed with straightforward answers. If you’re more of a visual learner, then here’s a nifty video presentation of the myths and facts. Five and a half minutes sums it all up, and it’s easily shareable too.

Those of you not in Canada may not be familiar with the CBC Radio show White Coat Black Art hosted by Dr. Brian Goldman. The weekly program covers a diverse range of topics and aims to “demystify medicine.” I’ve listened to it for years and was especially interested in the episode that aired November 15th, since it dealt with the ways in which celebrities approach illness when it comes to their very public lives. While the program didn’t deal with Lynch Syndrome, it did take a very human and discerning look at  the way celebrities talk about illness. Dr. Goldman interviewed Dr. Michele Berman and Dr. Mark Boguski, the husband and wife team behind “Celebrity Diagnosis” a web site that not only reports on celebrity illness in the news, but goes a step further to bring awareness and information about those illnesses to the general public.

Their work reminded me of earlier this year when Angelina Jolie published her now famous op-ed “My Medical Choice” in the New York Times in which she wrote about her decision to undergo a double mastectomy based on her discovery that she carried the BRCA1 mutation. That opinion piece and the public discussions that surrounded it, prompted me to go back and take a closer look at my own genetic testing results and my risk for endometrial cancer. (I’ll write more about what came of that re-evaluation in the days to come.)

In honor of the holiday spirit and the fostering of family ties, I’m posting the above tweet. I really appreciated Michelle Healy’s piece Talking Turkey about Health in USA Today encouraging people to take the advice of Surgeon General Boris Lushniak this holiday season. “Eat well, but do so in moderation. Take a brisk walk after dinner to burn off some extra calories. And before the day is over, spend time with your assembled family members and discuss the diseases and conditions that make up your family health history. Sharing that information can improve and possibly save lives.”

The article even includes a list of first steps to take in gathering and recording a family medical history, as well as links to forms that will help you organize your data. Awesome!If you’ve read my first blog post, Daughter of Family G, you’ll know that in my family’s case, keeping track of our medical histories has, without a doubt, saved and enriched many lives.

Happy Holidays to all!

 

Daughter of Family G

dna

dna

In 1895 Pauline Gross, a seamstress in Michigan confided in Dr. Aldred Warthin, “I’m healthy now, but I fully expect to die an early death.” Warthin, a pathologist at the University of Michigan took her words to heart. Rather than dismiss her confession as the worried notions of a fretful young woman, he chose to see her prediction as one that was based upon the astute observation of her family’s medical history. Far too many members of Pauline’s family had died from stomach, colon and endometrial cancers. The seamstress was only doing what she did best, minding the details.

While her prediction sadly came true (she died of cancer at an early age,) Pauline could not have known how far her conversation with Dr. Warthin would reach into the future. Through the years her words would be carried by members of her family and medical researchers alike, to one day become an important part of the history of genetic testing.

I’m proud to be a part of Pauline’s family tree and a member of the group Dr. Warthin would name in his research, “Family G.” Research that would one day fall into the hands of Dr. Henry T. Lynch in his search to assemble the pieces of the genetic puzzle known as HNPCC, or Lynch Syndrome.

Between 2000 and 2002, I wrote and produced a radio documentary for the CBC called Daughter of Family G. The piece recorded the path I took in making the decision to undergo genetic testing. So much has happened since then. I never could have imagined that I’d have traveled so far in such little time, both physically and emotionally. Peering into my DNA changed my life.

As you might imagine, it caused me to take an immediate inventory of my health. I became vigilant about making doctor’s appointments and setting up annual screenings. But the results also infused my life with a curious sort of fearlessness. I’d watched my mother battle colon cancer and wondered where her strength and courage had come from. Finding out that there’s an enormous potential for a battle of my own one day, I decided to tap into that vein of strength sooner rather than later. While I try not to feel that cancer is inevitable, I do feel that putting things off is no longer an option. This goes for everything in my life, especially my writing.

Mathilde Gross Wheeler

Mathilde Gross Wheeler

That’s my great-grandmother, “Tilly” in her wedding dress – a dress that she and her sister, Pauline fashioned together before Pauline died. They were part of a vibrant, well-known trio that also included another sister who was a milliner. Their skills as seamstresses were often in demand and that’s how Pauline came to know Dr. Aldred Warthin. He respected her artistry and her intelligence, and she felt compelled to confide in him her concerns about her family’s medical history and her fate.
Whenever I think of hesitation, of saving my imagination and concerns for another day, I think of Pauline.
Share yourself – your soul, your hopes, your dreams – it can change lives and possibly the future.

I hope you’ll listen to the first part of my journey in the podcast Daughter of Family G


Read Dr. Lynch’s 2010 account of the history of Lynch Syndrome (from Pauline’s conversation with Dr. Warthin, to contemporary findings) in Historical Aspects of Lynch Syndrome.