Megan Meyers, #Hcchat on Facebook, and The Dr. Henry Lynch Symposium, and The Buttfolio

Real quick … some important information and news for you — Megan Meyers talks Lynch syndrome, #Hcchat on Facebook, The Dr. Henry Lynch Symposium, and The Buttfolio …

Megan Meyers, a great genetic counselor from UCSF (some of you may know her from Kintalk.org) recently came out with a highly informative video on Lynch syndrome. It’s definitely a #MustWatch. Gratitude to The Hereditary Colon CancerFoundation (www.hcctakesguts.org)  for bringing this to my attention.

Also, if you’re on Facebook, you may want to follow our new #Hcchat (Hereditary Cancer Chat) page. Yours truly along with my partners in crime, Amy Byer Shainman and stellar genetic counselor Ellen Matloff, created this page to keep you up-to-date with information from our successful #Hcchat’s on Twitter. We encourage you to ask questions, share stories about your hereditary cancer syndrome, post blogs, and to make connections with others from the various hereditary cancer communities.

https://www.facebook.com/pages/Hcchat-Hereditary-Cancer-Chat/870388953054442?fref=ts

All hereditary cancer syndromes warrant the same attention and that’s what we’re aiming to do on this platform! Our next Tweet chat is coming up next month. Please see the details below. 

HcchatSept

 

Also, Creighton is hosting a hereditary cancer symposium in honor of our beloved Dr. Henry Lynch next month. Please click on the link below for more information.

https://healthsciences.creighton.edu/continuing-education/courses/dr-henry-t-lynch-symposium-advances-hereditary-cancer

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No worries if you cannot attend — I will be sure to keep you in the loop about all the latest in regards to Lynch syndrome and other hereditary cancer syndromes.

And last but not least, Dustin and Ben from The Buttfolio are looking for models!  The Buttfolio is a photobook project, aimed at young-onset colorectal cancer, and some of the genetic factors which contribute it. They are currently accepting applications from candidates in the Maryland/DC/Virginia/Delaware region, who would like to be photographed for the book! Survivors, current patients, caretakers, nurses, practitioners, anyone linked to the community with a butt and a story! You can fill out the quick questionnaire on the website under the “Join” tab at the top. It takes about 3 minutes to fill out, and they’ll get right back to you to set something up!

If you’re interested, please click here:  www.thebuttfolio.com

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Hope you’re all well and enjoying the summer.

Yours,

g

In Search of A Simpler, More Meaningful Life …

 

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I just made a profound, much-needed changed in my life — I moved out of my home of twenty years in order to live a simpler, more meaningful life. I suppose being a homeowner has it upsides for many but for me it became the bane of my existence. My home began to represent a place I no longer had the energy for – it was a reminder of who I no longer was; it what a reminder of a place I was no longer capable of wanting to care for; it was a place where I found myself around people and situations that were negative and left a lot to be desired.

We got rid of the majority of our stuff — a very liberating experience I must say — and moved into a two-bedroom apartment in a suburb outside of Chicago to a place which I love. Our new space is open, eco-friendly, bright, and full of life.  There is very little here to remind us of the past four difficult years. It has radically changed my life – I am much happier, I feel as though an elephant has been lifted from chest, and I don’t have this sense of dread when I awake in the morning. Like-minded, kind, and emotionally generous people besiege us. Our place is small but beautiful. I clean far less and am able to spend more time nourishing the things I love – my family, my friends, my dog, my advocacy efforts, but more importantly, myself.

Being diagnosed with Lynch syndrome and becoming an advocate for those with it and other hereditary cancers has given me tremendous clarity – life is not about living to work, buying stuff, and spending money on things we don’t need. Life is about family, friends, caring for each other, enjoying life’s little pleasures with the one’s you love, helping others, and trying to leave this world a little better than you found it — the world would be a far better place if we defined ourselves by what we give rather than by what we have and take.

Speaking of giving … I had the pleasure of seeing Travis and Shawnie from The Hereditary Colon Cancer Foundation (one of my fave foundations) –http://www.hcctakesguts.org  last week. I was very grateful they took time out of their hectic schedule to give me some of their time; they are on my top 3 list of the most emotionally generous souls I know within the colon cancer community (Candace, you’re up there, too).  I’ve said this before and I will say it again: I think that if the colon cancer and Lynch syndrome communities are truly serious about helping those with colon cancer and hereditary cancer syndromes then we could be far more successful and effective if we supported each other and presented a united front, like most of the BRCA community. Everyone is doing amazing, unique things and we need to be more supportive of each other. Period.

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In the meantime, Ellen, Amy and I will have our next #Hcchat -> https://twitter.com/hc_chat in September with Dr. Sharlene Hesse – Biber, author of the book Waiting for Cancer to Come on September 9th and the topic is:

Who Really has Access to Genetic Testing? Details to follow shortly.

#Hcchat

#Hcchat

Regarding the Lynch syndrome advocacy front — yours truly was recently asked to write The Letter to the Editor for a Greek oncology journal, please see the link below:

July 2015 Forum of Clinical Oncology: Greece. Editorial:

I Have Lynch syndrome by Georgia Maria Eliopoulos – Hurst

http://www.degruyter.com/view/j/fco.2015.6.issue-2/fco-2015-0011/fco-2015-0011.xml?format=INT

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I also recently posted a new piece in Cure entitled: Scoping Out Colon Cancer. There’s a short discussion about the importance of having a colonoscopy and I offer some advice on how to get through it without issues:

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Scoping Out Colon Cancer

http://www.curetoday.com/community/georgia-hurst/2015/08/scoping-out-colon-cancer

I hope you’re all enjoying your summer, nourishing yourselves with all the amazing fruits and vegetables available this time of year and spending time outside getting some vitamin D.

Yours,

g

Twitter: https://twitter.com/ShewithLynch

Facebook: https://www.facebook.com/ihavelynchsyndrome

Ellen Matloff Unplugged

Ellen Matloff Unplugged

Ellen Matloff Unplugged

I was on the phone one day last winter with Amy Byer Shainman, my BRCA #BFF, and we were talking about starting #Lschat (Lynch syndrome Chat) on Twitter. Lynch syndrome was in dire need of a strong media presence on Twitter and so that is when I decided to begin #Lschat (Lynch syndrome chat). Amy and I had participated on various other Twitter chats and wanted to mix things up a bit by bringing an expert onboard; I wanted to be sure we were providing our audience with the correct information and to give them with the opportunity to ask experts from the fields of our topics any questions they may have.

If you’re interested in genetics and the politics behind them, then chances are you know the name Ellen Matloff — a.k.a. genetic counselor extraordinaire. I tend to think rather big — and so I asked Amy: “How about we call Ellen Matloff and see if she’s interested in working with us?” Amy thought I was nuts, we called her, and then Ellen jumped on our #Lschat train. After a few successful #Lschat’s, we decided to focus on various hereditary cancer syndromes — not just Lynch syndrome — because of the many parallels between them. Whilst I am an advocate for those with Lynch syndrome and Amy is one for those with BRCA, we’ve decided that all hereditary cancers warrant the same attention. #Lschat evolved into #Hcchat — our chats always include Ellen and usually a expert on the topic being discussed.  To date, our last #Hcchat has made over 70 million impressions on Twitter.

And so, it is with great pleasure I bring you the interview I recently had with Ellen Matloff…


G: Ellen, you’re well known in the genetics and hereditary cancer worlds because you were an outspoken plaintiff in the BRCA patent case that went to the Supreme Court.

E: Well, thank you. I saw the negative impact of the patents on patients, clinical care and research and I’m passionate about the topic. I’m also good at ‘outspoken’.

G: Yes! We love that you speak the truth and that you stand up for patients!

But other than being a plaintiff and a cancer genetic counselor who has published a lot in hereditary cancer, we don’t know much about what you’ve been up to since leaving Yale and clinical practice. But let’s start with some history. How did you end up in genetic counseling?

E: I learned of genetic counseling during my sophomore year at Union College when a local genetic counselor gave a lecture to my Genetics class. The combination of science and psychology fascinated me. I did a genetics internship at Albany Medical School and I was hooked!

G: What made you go into cancer genetics, specifically?

E: My first job was actually in general and pediatric genetics at SUNY Health Science Center in Syracuse, NY. I did a lot of work with Cystic Fibrosis families and I’m still in touch with many of them. I learned a great deal about general genetics. But the field of cancer genetics was beginning to crack open and I saw an opportunity. The then Director of Yale Cancer Center, Vince DeVita, recruited me to start their program, so I packed my things and moved to Connecticut.

G: Was Yale eager to have you start a Cancer Genetics Program?

E: Hmm, not so much. There were a few visionaries, like Dr. DeVita, who knew this was the wave of the future, and they supported the movement. But I was surprised at the reluctance of many clinicians and patients to launch genetic testing. Remember, it was 1995 and many saw the whole thing as ‘fortune telling’ and ‘Pandora’s Box’. I gave a lecture to a group of research clinicians when I arrived and mentioned the option of prophylactic surgery for people who carry mutations. A research nurse yelled out in the middle of my lecture that I was ‘suggesting the mutilation of their patients’. I was shocked. Not only were there data to support this option, but also patients were having such surgeries based on family histories alone! Over time colleagues began to trust me and to trust genetic testing, and over 18 years we built one of the best programs in the country.

G: So 18 years later you were the Director of one of the most successful and visible Cancer Genetic Counseling Programs in the world. What made you leave?

E: To be honest with you, I never thought I’d leave. I was so invested in our patients, the clinicians I worked with, and my staff — I would have bet you a million dollars that I’d be sitting in that chair for the next 25 years. But the climate changed and I started exploring Plan B. It was then that I saw the opportunity of My Gene Counsel laying ahead.

G: What was the opportunity?

E: Much of my research had focused on adverse events in genetic testing. Meaning, what happens when people misinterpret genetic test results? We collected cases from all over the country of patients whose test results were misinterpreted and they’d had prophylactic surgeries they didn’t need, or had been diagnosed with late-stage cancers because they’d been falsely advised that their results were normal.

G:  What? How terrible!

E: Yes. And what is even more terrible, the frequency of these errors is increasing because genetic testing is becoming more complex, is being ordered more often, and the overburdened clinicians ordering that testing have little knowledge of genetics. Add to that President Obama’s Precision Medicine initiative and the huge drive toward genetic testing in almost every area of medicine and you can see the two train tracks crossing.

G: That sounds like a train wreck, not an opportunity!

E: But it is an opportunity – an opportunity to prevent the train wreck! And that is what I saw very clearly. We need a digital health tool to accompany genetic test results to ensure that clinicians and patients interpret results accurately. That is what we’ve built at My Gene Counsel (mGC).

G: Wow. That is quite an undertaking. Will the mGC tool replace genetic counseling?

E: I’m so glad you asked that question … absolutely not. The mGC tool will help guide patients who’ve had genetic testing to certified genetic professionals. But it does a lot more than that. It will help clinicians and consumers effectively utilize genetic test results and stay up-to-date.

G: How have you built the mGC tool?

E: We’ve built it using lessons learned from many years of clinical experience in the field, and with the help of active clinicians who are entrenched in this work. We’ve also had consumers on board since day one, and are building a tool around their needs.

G: A lot of companies, studies and initiatives give lip service to involving patients and Consumer Advocates, but few do it in a genuine and meaningful way. Why did you decide to involve us?

E: Honestly? Because over the past 20 years I’ve learned the most important lessons from my patients. My patients gave me cues about the problems in the field, what they needed, and the direction in which the field was moving — I just needed to listen. Consumer Genomics has never been stronger and any viable genomics product must involve consumers, and revolve around consumers.

G: Amy Byer Shainman and I approached you months ago about partnering with us to create #Lschat (Lynch syndrome Chat) which is now #Hcchat (Hereditary Cancer Chat) on Twitter. Not many CEOs of a burgeoning start-up would have taken the time to partner with two Patient Advocates. Why did you?

E: I would have been crazy not to. You and Amy are two of the most active advocates for Lynch syndrome and BRCA, respectively. It was a great opportunity for me, and for My Gene Counsel, to become more embedded in the consumer communities and to really learn what you want, what you need, how you think. We’ve used that information to build and shape the mGC portal. I also love working with you and Amy, and the hereditary cancer community. 

G: How do you see the My Gene Counsel tool playing out as genetic testing evolves, and as precision medicine evolves?

E: I think that as this launches and becomes integrated, we’ll look back and wonder how we ever managed genetic testing without the mGC tool. Our nation and our health care system are investing so many resources into genetic testing and precision medicine — we can’t afford to have the critical information we gain from genetic testing to be misinterpreted.

G: This is exciting stuff!

E: Yes, we think so. We seem to be in the right place at the right time: genetics, precision medicine, digital health, and consumer genomics are all ripening at the same time. My Gene Counsel is at the crossroads of all four — we are very fortunate.

G: Ellen, thank you for your time, for working on #Hcchat with us, and for being on Ihavelynchsyndrome.com’s Board of Directors. The pleasure is most certainly all mine!

E: You are most welcome!


If you’re interested in Ellen Matloff’s work, please visit: http://www.mygenecounsel.com

On Twitter: https://twitter.com/MyGeneCounsel

And to follow #Hcchat (Hereditary Cancer Chat): https://twitter.com/hc_chat

Yours,

Georgia

#Hcchat, Mayo, Keytruda, BRCA, and Pink & Blue

 

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Ellen Matloff of (@mygenecounsel), Amy Byer Shainman (@Brcaresponder), and I had another #Hcchat last night where we discussed men and hereditary cancer syndromes in honor of Men’s Health Month. You may find the transcript along with many of the informative banners for the chat here: https://goo.gl/lfWrNG

One of the most important parts of that chat, which we wanted to bring attention to, is a study about men with the BRCA mutations, being conducted at Boston College by Dr. Hesse-Biber. For more information regarding this study, please click on this link: https://bostoncollegeaands.qualtrics.com/jfe/form/SV_2meMcRSndGrMxYE 

#Hcchat was highly successful and managed to make almost 6 million impressions on Twitter thus far — just within the past 24 hours. We will be having another #Hcchat in the next 4-6 weeks, more details regarding the topic will be announced shortly.

In the meantime, I returned from Mayo about month ago and thankfully got another clean bill of health — all my scopes were clear, not a polyp to be found anywhere and my blood work came back perfect with the exception of my hormone levels. It took me a few days to appreciate the good news because my scanxiety was through the roof. My 2nd Mom came with me on this trip, and we actually had a lot of fun and have decided to make an annual pilgrimage out of it. I spent five days there this time because I had to see a dermatologist and speak to a gynecologist because my hormones are out of whack again. I’m on HRT but my blood work suggested that I am still not getting enough estrogen. Again I have found myself in fog of lethargy. I’m developing osteoporosis in the lumbar area of my spine and have managed to shrink 1.75 inches within the past two years. If I keep shrinking at this rate I’ll only be two feet tall when I die, oy vey! Yes, I’m thankful I’ve been able to take preemptive strikes again some Lynch cancers and all but people need to realize there are life-altering consequences to these surgeries, they are not to be minimized.

I went to ASCO in Chicago a couple of weeks ago; the most relevant piece of information for those of us with Lynch syndrome is that Johns Hopkins is working on a clinical trial using a tumor’s genetics to guide immunotherapy. Clinical benefits have been noted in cancer of the colon, uterus, stomach, prostate, duodenum, and bile ducts with those with advanced stages of Lynch syndrome related cancers. Here’s an article from The New York Times discussing the immunotherapy called Keytruda: http://www.nytimes.com/2015/05/30/business/new-class-of-drugs-shows-more-promise-in-treating-cancer.html?_r=0 . This is the clinical trial to watch; the issues are that this immunotherapy is not currently covered by insurance and is very expensive — hopefully these issues will change with time. I also had the privilege of meeting Deborah Anderson, The Chief Executive of Bowel Cancer UK — I look forward to some form of collaboration with her in the very near future. 

In the meantime, I’m in the process of simplifying my life and moving to a town outside of Chicago where I’ve always wanted to live. I’m downsizing and relinquishing my responsibilities as a homeowner to spend more time doing things I have found tremendously meaningful — spending more time with my family and focusing on my advocacy efforts and non-profit. With havelynchsyndrome.com, I spend countless hours speaking to those who have been recently diagnosed with Lynch syndrome, helping them find resources needed to fill in the medical gaps, writing for this site, other blogs, Cure Today, writing for global oncology journals, doing podcasts, connecting with doctors, genetic counselors, patient advocates, and spending time working on #Hcchat with Amy and Ellen.

Please be sure to check out my articles on Cure Today: http://www.curetoday.com/community/georgia-hurstI am a monthly contributor to them and write a lot about Lynch syndrome, hereditary cancer, genetic counseling, and genetic testing. I’m trying my best to get the word out about Lynch syndrome and it’s working — and one of the reasons why it’s working is because of the BRCA community. I have found them to be exceptionally supportive and helpful with my advocacy efforts and I now know why they have been so successful as a whole. They are smart, resourceful, support each other regardless of their differences, and are social media savvy — other advocates should take heed. So kudos to them for helping me get the word out about Lynch and other hereditary cancers. They don’t make distinctions between hereditary cancer syndromes — I am honored and flattered they have been so supportive, helpful, and inclusive — so thank you to the BRCA community! Infinite gratitude for all of your support.

Speaking of BRCA, the trailor for the movie Pink & Blue recently came out and I think it’s an amazing piece of art; no mud, no lotus. It will be out in the fall, cannot wait to see it. Check it out here: https://vimeo.com/128395888. 

Yours,

G

 

#Hcchat: Men and Hereditary Cancer

Please join us on Twitter with #Hcchat this Wednesday! In honor of #MensHealthMonth and #FathersDay, we will discussing men and hereditary cancer syndromes.

I will be back shortly to blogging. Hope you’re all well.

Yours,

Georgia

 

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Death Can Sometimes Be a Gift

MOMMom, you died on Thursday night, September 18, 1980. That night has been seared into my memory. I don’t recall much about you but I do know that you were beautiful, full of life, always smiling, cooking, cleaning, and caring for others. I don’t know if you died from a heart attack or an aneurysm – all I know is that you were too young to die at the age of 49.

I was only nine years old when you died – too young to be left motherless, too young to understand the implications of death. With the passage of time I have forgotten the sound of your voice, your laugh, and really don’t recall much from my short time with you.

All I do know is that your death was the single most traumatic experience of my life. You were my Mother, the one who nourished me, and loved me beyond measure – death took you and all of your nourishment and love away from me, too; you were no more.

Growing up sans mother had a profound effect on me. I didn’t have a lot of sibling support and Dad was ill-prepared to raise a pre-adolescent female with whom he had no connection with prior to your death. He was too mired in guilt, battling his own demons, and drowning himself in whiskey because of the gaping hole your death left in his heart.

Not having my basic physical or emotional needs met on a daily basis was an impediment on my development on various levels. Not having you around and having to deal with an alcoholic father made me grow up rather quickly. I spent a lot of time grieving you and put a lot of my energy into my schoolwork to help me forget about the hopeless situation I had found myself in. I didn’t have a lot of friends in school because I became very depressed after you died. Being nerdy, short, and wearing the same clothes day after day made the other kids think I was weird. I had been deemed ‘damaged goods’ by some of the parents at school because I was motherless — as if it had been my fault. My sensitive soul and quiet nature took all this so personally. Many times it was too much to bare.

Sophomore year of high school is when I profoundly changed. I became a huge risk taker, trying and doing things much sooner than my peers. After reading Darwin’s works I realized I had to become more adaptable in order to survive. I learned to read people quickly and immediately knew whom I could and could not trust.

I found my voice and started rebelling against everyone and everything.

My life has not been easy and I have made many mistakes but I have also many good decisions. Many people underestimated me because they thought the odds were against me but I managed to prove them wrong.

Your death made me strong.

Your death made me independent and somehow I developed grit.

Your death made me more compassionate and empathetic to the plight of others.

I see many things in the world which others don’t.

Your death made me realize that I should not take people for granted because they can be ripped out of your life without any notice; I make a concerted effort to tell those I love how much they mean to me every day.

Your death made me realize that ‘family’ is not about blood ties.

Most importantly, your death has made me a better mother. I have a beautiful, bright son now and I have taught him things I wish I had known before you had died. He knows how to cook, clean, do laundry and care for himself, just in case. But more importantly, he is kind, compassionate, and generous. Every time I look into his eyes I see you — you are still with me.

Life may throw me as many curves balls as it likes; at times I may struggle but I know I can handle it. Not a day has passed in 35 years without thoughts of you. But with the passage of time and dealing with many of life’s challenges, I have come to realize – your death has been a gift. Your death has made me a better person and the immense strength that I developed as a result has carried me through the worst of times and will continue to do so when many more are thrown my way.

Happy Mother’s Day, Mom.

Love,

Georgia Maria

Big News for Lynch syndrome Advocacy

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I am honored and humbled to announce that Ihavelynchsyndrome.com is now a registered charitable organization in Illinois and tax-exempt under Internal Revenue Code Section 501(c)(3).

Infinite gratitude to Dr. Patrick Lynch, Ellen Matloff , Candace Henley, Alan Michael Blassberg, Amy Byer Shainman, Anne Neri Kostiner, Christina Coleman, and John Hurst for holding positions on my Board of Directors. It is a tremendous honor and privilege to be working with such an esteemed group of people.

The purpose of ihavelynchsyndrome,inc. is to educate and expand global awareness of Lynch syndrome, a syndrome of autosomal dominant inheritance, which predisposes one to one or more of a dozen of early onset (<50 years of age) cancers. It is estimated that there are 1 million Lynch carriers in the U.S. but currently only about 5% of them know their status; many opportunistic cancers that affect this group are at rates far above the national statistical average.

Physicians, specifically general practitioners, gynecologists, and gastroenterologists will be targeted as they are at the forefront of the fight of Lynch syndrome. Genetic counseling and genetic testing are crucial in the fight against this syndrome and are both highly recommended for families who may be afflicted with this genetic disorder.

The goals are: to continue assisting and empowering those who reach out for emotional support, information and resources, by giving them hope and trying to decrease their despair; to emphasize the need for medical practitioners to watch for family histories in particular of early-onset colon cancer and to include the psychological effects of a positive diagnosis, and prophylactic surgery for women, in the care of their patients; to emphasize that qualified genetic counselors need to be consulted; the importance of genetic testing; to link research and resources internationally; to provide information on the benefits positive lifestyle changes; and finally, my greatest goal is to increase Lynch syndrome awareness amongst the global medical community – especially now since colon cancer is becoming more prevalent worldwide in people under the age of 50.

For more information regarding advocacy efforts, please see the Advocacy pagehttp://www.ihavelynchsyndrome.com/advocacy/. Please send any further questions to: ihavelynchsyndrome@gmail.com.

On Twitter: #Lschat is now #Hcchat (Hereditary Cancer Chat) and Ellen Matloff of My Gene Counsel (@MyGeneCounsel), Amy Byer Shainman (@BRCAResponder) and I will hosting our 4th chat next week on Sex after Prophylactic Hysterectomy and Oophorectomy with Dr. Bober, the Director of  Sexual Health Program at the Department of Psychosocial Oncology and Palliative Care at the  Dana-Farber Cancer Institute. We are thrilled to have Dr. Bober join us in helping us answer and address many of the sexual issues and concerns which follow these surgeries. Please join us; we anticipate an informative, interesting conversation.

You may learn more about Dr. Bober here: http://www.dfhcc.harvard.edu/membership/profile/member/499/0/

HCchatbober

 

Yours,

Georgia

 

 

I have Lynch syndrome in Denmark

StineAn early morning, just a year ago, I was standing in my kitchen making my morning coffee and getting ready for work when I got a text from my mom: “Have you heard from your dad?” Since I hadn’t been in contact with my dad for years, I found her question very odd.

Now my mom knows me very well, and she knew that I wouldn’t answer my phone if my dad called but she knew he wanted to tell me about something important regardless of our complicated family situation.

My dad was in the hospital and had been diagnosed with colon cancer. My dad had surgery and the doctors were concerned about his strong family history of colon cancer; that is when the doctors started talking about cancer genetics. I never heard about this before. I knew that cancer could come from many things — but being born with cancer genes? No way …

The doctors told me and my sister to go see our own doctor, to tell her about our family medical history, and to ask to be referred to genetic counseling.

We went to see our doctor as we were told to. We live in different parts of Denmark, and don’t have the same doctor, and that turned out to be the first challenge. A couple of weeks after seeing my doctor, I received a letter from the hospital. I had an appointment for a colonoscopy. I immediately called my sister. “Have you gotten your letter from the hospital yet? Did you know what is going to happen to us?” I must admit that I was a bit shocked. They sent me laxative in an envelope.

My sister hadn’t gotten her letter yet, but panicked a little with me on the phone, as I read mine to her. A couple of days later, she got her letter — no colonoscopy and no laxative but she did have an appointment with a genetic counselor.

We were very confused by that and a little frustrated. Why were we not getting the same procedure? The doctors that treated our father had talked about family history and genetically inherited cancer, so an appointment with a genetic counselor made sense to us. I called my doctor, and told her that I thought she had given me the wrong reference. She didn’t agree with me, and I had to insist on getting a reference to a genetic counselor.

I went to see the genetic counselor, and the first step was to make a family medical history tree. We have a very big family, with very little contact, so that was a puzzling task. My sister and I were referred to two different counselors, at two different hospitals.

My appointment was first and my genetic counselor was very nice and professional. She told me to make my sister cancel her appointment, and get transferred to her, so we would be treated together. That made so much more sense, and I felt that this was someone who knew what she was dealing with — finally.

After putting together the family tree, our counselor told me, that she would get back to me. While I waited for my genetic test results I had a colonoscopy, which came back clear. “Of course,” I thought, “Why wouldn’t it be? Nothing is going on in my colon!”

Our counselor got back to me with the message that they found reason to suspect genetically inherited cancer. Now they wanted a blood sample from my dad in order to look for genetic mutations. We waited 3 long months for the blood sample results.

I was at work, when I got an email from my genetic counselor. It said that she had gotten my dad’s test results, and would like to see all of us for a meeting. Soon after, we went to see our genetic counselor, my dad, my sister and I. This was the first time in years that saw my father. There is nothing like getting reunited with estranged family members over a genetic cancer counseling session.

My father was diagnosed with Lynch syndrome. In my dad’s blood sample, they had found the gene mutation MSH6, which increases the risk of colon cancer in both genders and endometrial cancer in women. We sat there and were told about the 50% risk of inheriting the mutation and that is when my sister started crying. She had thyroid cancer when she was 18, and the thought of having a mutation, which predisposed her to cancer, terrified her.

We were offered a blood sample and we both agreed to have it. I told my sister not to worry. “Oh, I worry” she said. “I don’t worry at all” I said, “I’m just so sure that I don’t have that mutation. Why on earth would I?” That was honestly how I felt but my sister was no so confident. “I’m absolutely certain that I have it. It’s like I can feel it sitting in there,” she said. The weeks of waiting for the genetic test results felt so long and as time passed I became more impatient and insecure. I wanted an answer.

My sister and I received our letters the same day. I opened mine. Then I started laughing. “I have the mutation,” I said to my fiancé. “I have the mutation.” He looked at me so seriously, and told me how sad he was for me. “Oh stop,” I begged him, “this doesn’t change anything.”

I called my sister. She was on her way home to open hers. She was sad to hear about my result, and scared of her own. Half an hour later, she called me back. “I don’t have it. I went free,” she cheered. She was happy of course, but sad and confused for me. We both were. I had been so sure that I would not have Lynch syndrome. She had been so certain, that she would. She questioned the results: “Do you think they made a mistake, and swapped our tests? Should we ask for a new one?” I laughed, and told her not to worry. It was okay. I was okay. Nothing was changed. It had always been there, I just didn’t know about it before. Nothing changed.

The next morning I woke up thinking “What the f*** just happened here?” Feeling scared, and different, like everything had changed.

I found the folder that my counselor gave me about Lynch syndrome! I started reading everything but read it in a whole new way now — this is about me. I have this. I have Lynch syndrome.

It was like a whole new identity for me. I had to get to know myself as a person with Lynch. And it was so weird, because what did that mean? I still don’t know. Some days I don’t think about it at all. Some days I am scared. Some days I feel that everything is changed. Some days I feel like nothing is changed. And that is exactly what it is to me. Every thing and nothing has changed.

Last month I went to my first endometrial check. The doctor I met there was very inhumane. “You know why you are here, and it is just a matter of time, then you won’t be getting these checks anymore — eventually they would be abolished. They are not really necessary, and you will just have to be observant of the signs you get from your body, like everyone else.” That was what he said to me — I was speechless and angry with that doctor. Unfortunately I was too shocked to tell him at the time. The doctors in Denmark do not understand the screening protocol for Lynch syndrome. This is a BIG problem.

It has just been a year since my dad got cancer and in that year I have been diagnosed with Lynch syndrome, had a colonoscopy and endometrial check, met doctors who don’t know anything about this, and doctors who know a lot.

What I know two things for sure:

First and foremost, I have to be my own advocate and listen to my body. And what my body tells me is that I need these routine checks every two years, just as I have been promised.

Two — you may be able to run away from your family but your genetics will always follow you.

Stine Glasdam Larsen, age 33.

Denmark.

I Have Lynch Syndrome — Guest Blogger

IMG_20140606_210207781I have Lynch syndrome …

It was May 4, 1999 when Dad had his colonoscopy. He had frequent diarrhea, weakness, and some unexplained weight loss over a couple months. After several weeks of taking antibiotics, for what they thought was an intestinal infection, a colonoscopy was suggested.  I remember the feeling of my body going numb when the doctor said it was cancer. It had advanced so much that they didn’t wait for pathology results to start his treatment.

Dad died July 31, 1999, 3 months after diagnosis. He was 50 years old; he was so young at heart and we always considered him to be as healthy as a horse. Watching my Dad take his last breath was the most profound thing I’d ever experienced —  he and I had a special father/daughter bond. He could be difficult at times but I knew he was always there for me; now he is gone.

I had my first colonoscopy a year later and fortunately no polyps were found and my doctor recommended I revisit him in 10 years. Twelve years later, I very reluctantly scheduled my second colonoscopy. Within the twelve years time and between the two colonoscopies I’d gone through a tremendous amount of stress: I attended nursing school and graduated, started working as an RN, raised my son, got divorced, moved twice, started a new job, and moved in with my boyfriend. There was no time for a colonoscopy – my life was just too busy. Later I discovered it might have been a blessing in disguised.

April 19, 2012 I woke up with my boyfriend sitting next to me when the doctor came in. I remember the doctor saying he removed a couple polyps, one larger than the others so he put a little ink tattoo in the place where he removed the larger polyp. They do this so they can keep an eye on that area he said but I knew better — they tattoo the area so the surgeon can find that part of the colon where the cancerous polyp was removed.

Ironically, I was working on the oncology unit when I received the call from my gastro doc saying it was cancer. The conversation lasted 8 minutes but I only recall the first 30 seconds of it. All I recall thinking is: “I have cancer.”

On May 21, 2012, a small section of my colon was removed and any sign, cell or fleck of cancer, was gone! Pathology came back negative, no chemo or radiation was needed. I was hoping I would just have to deal with a couple months of recovery and thought the cancer would just be a memory; however, the follow up appointment would prove different and that it when it was recommended I seek out genetic counseling.

I’d never heard of Lynch syndrome, or HNPCC, but apparently I met all the criteria.  After meeting several times with my genetic counselor and discussing it with my family, I agreed to be tested and allowed them to retrieve my tumor to be tested as well. All I wanted to know was if my cancer was hereditary. A few weeks later, the test came back positive – I have Lynch syndrome.

Since I heard this phrase my life hasn’t been the same. I felt like a walking time bomb. I’ve caught myself saying many times, “It’s only a matter of when the cancer comes back.” I was given a list of different cancers, telling me the percentage of my risk for each cancer since I have Lynch syndrome. Aside from being at high risk for colon cancer, women with Lynch are also at risk for endometrial and ovarian cancers — so it was strongly recommended I have a prophylactic hysterectomy, since screening measures for ovarian cancer are very poor at this time. I’ve also been told if the colon cancer returns, there is a chance my entire colon will need to be removed. Since I’ve already had cancer I was told I’d have yearly colonoscopy, endoscopy, a urine cytology, a mammogram, subsequent biopsies if needed, and blood work every 6 months.  I will have several type of doctors following me: a oncologist, gastroenterologist, urologist, oncological gynecologist, oncology surgeon … so rather than take the bull by the horns, hanging on for this wild ride, I occasionally find myself shutting  down. I am concerned that my brothers and son may have Lynch syndrome, too, but hopefully with meticulous, annual screening they will live long, healthy lives.

Writing this blog has been a catharsis for me and I hope it resonates with others who might be going through this as well. I find myself stressed out each time I have an appointment with any of my team of doctors. I worry and think, “What will they find now?” and  “Where will the cancer be next?” I’ve learned that these are normal feelings and I’m not alone. Reading other blogs has helped me and I hope my blog will help others, too.

-Angela


Thank you to Angela and to all of my other guest bloggers this past month. It’s been an honor and privilege to have all of  you share your incredible stories during Colon Cancer Awareness Month. 

By the way, our #Lschat on Lynch Syndrome Awareness Day reached over 10 MILLION people on Twitter. Thank you to all of you who participated and helped make it a tremendous success. Also, here’s a recent piece I recently wrote for Cure which may be of interest to you, especially if you’re interested in Angelina Jolie and her recent announcement about her oophorectomy due to having the BRCA1 mutation:

http://www.curetoday.com/community/georgia-hurst/2015/03/angelina-jolie-knowledge-is-not-enoughhttp://www.curetoday.com/community/georgia-hurst/2015/03/angelina-jolie-knowledge-is-not-enough

I will be back to blogging in a week or so. Lots of great news to share — hope you’re all well.

Yours,

Georgia

The ButtFolio

I am always interested in helping and promoting unusual advocacy efforts and with that said, I present to you The ButtFolio …

KickStarter Image III

We set off on the road to The ButtFolio about a year ago. Ben and I have been best friends for 15 years or so, and both felt that we wanted to do something meaningful. To be completely honest, colon cancer wasn’t even something that came to mind when we were thinking about different causes to support, because it wasn’t something we were even aware existed. Being a Marine vet, and having lost a younger sister to juvenile diabetes in 2010, I had already started researching those topics when Ben came to me about colon cancer. He had lost his grandfather in Germany last year to it, and has a young cousin in Ohio with Lynch syndrome.

I was absolutely blown away by the numbers associated with colon cancer once I started looking into it. How could something this big be such an avoided topic? How could people not know about this, not be shouting about it from the rooftops? Ben and I were even more motivated to act when we started reading about the increasing number of cases in people under 50, who weren’t even considered “at risk” simply because they weren’t considered old enough.

The ButtFolio is our way of lightening the mood a little, in an attempt to get a conversation started. The message we want to convey is that just like everyone has a butt, everyone is at risk. Sure, there are certain factors that can put you at a higher risk than others, but colon cancer doesn’t discriminate. Old, young, black or white, whether you’re the mailman or the President, everyone needs to know the risk factors and get screened. The process may seem a little unappealing, but the reality is that one little checkup could be the difference between finding and removing some polyps, and finding stage 4 colon cancer.

In the ButtFolio, we will be sharing butts of every shape and size, color, age, and background. Some will be colon cancer survivors, some will not. We’ve received an overwhelmingly positive response from the community, and this project is something that Ben and I have come to be very proud to share with all of you. Take a moment to check out our crowdfunding campaign at (www.thebuttfolio.com) if you want to read more about the project or make a donation!

KS Test VDress In Blue

In honor of Lynch Syndrome Awareness Day and my brother Jimmy, we will be having our 3rd #Lschat this weekend. It will be the #TweetChatofTheMonth and we’ll be discussing colon cancer. We are very excited to have Dr. Allyson Ocean as our special guest commentator. Dr. Ocean is a medical oncologist and attending physician in gastrointestinal oncology, Solid Tumor Division, at NewYork-Presbyterian Hospital/Weill Cornell Medical Center; Assistant Professor of Medicine at the Weill Medical College of Cornell University; and medical oncologist at The Jay Monahan Center for Gastrointestinal Health. Source: (http://weillcornell.org/aocean). Looking forward to everyone participating and spreading awareness. 

Yours,

xogox

IMG_7464#Lschat_ Sunday, March 22, 2015-13

 

 

 

 

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