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I Have Lynch Syndrome -

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

Lynch_logo_FINAL_500dpi

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

 

 

 

 

Guest Blogger, Sam Duckworth

Sam
Nobody knows ♪♪♪♪ 
Da trouble my chromosomes seen ♪♪♪♪
Nobody knows ♪♪♪♪
Da sorrow ♪♪♪♪

Sing it, now! All together!

When I was invited (was I invited, or did I beg?) to write these words of wit, I thought I might pen a simple little sick log.  You know — present my credentials. But that was dull. Then I thought I would write something uplifting. But I didn’t feel up to it. That’s a joke.

But here’s something useful — I hope.

Do some research on your disease. Get multiple medical opinions. Don’t take “no” for an answer. In other words — Be Your Own Advocate!

When I had recovered from the hemicolectomy fun, my oncologist ordered both pelvic and thoracic CT scans. My insurer at the time, who shall remain nameless (Aetna) decided to only approve the pelvic exam. “Because Lynch syndrome only raises your chances for colon cancer.” No. Really, that’s what they said.

Less than a year later I thoroughly enjoyed the pleasure of an esophagectomy, the removal of my esophagus — to remove a stage II esophageal adenocarcinoma that had invaded my stomach.

Bye-bye esophagus.

Bye-bye most of my stomach.

Needless to say, I have lost a lot of weight.

But the point I’m trying to make is that the thoracic scan might have found that mass. Earlier. Much, much earlier.

Lynch syndrome raises your chances for over a dozen cancers, not just that of the colon. 

In the United States, medical insurers are motivated by profit. Patients and their caregivers are trying to remain alive and healthy. The two are diametrically opposed.

I failed to fight that rejection of my oncologist’s order and I have lived to regret it.

Never again.

And you shouldn’t either.

So there.

-Sam

 

We will be holding our 3rd #Lschat on Sunday, March 22, 2015, in honor of Lynch Syndrome Awareness Day.  Please join me, Ellen from My Gene Counsel, and Amy Byer Shainman for the chat. Dr. Allyson Ocean, a gastrointestinal medical oncologist from NewYork-Presbyterian Hospital/Weill Cornell Medical Center and medical oncologist at The Jay Monahan Center for Gastrointestinal Health will also be joining us as our guest commentator to answer your questions regarding colon cancer. 

 

#Lschat_ Sunday, March 22, 2015-13

Guest Blogger and Colon Cancer Survivor, Joe Jung

jung

Colon Cancer Survivor, Joe Jung

My story begins at the age of 38. I was having some symptoms, but had NO clue it would lead to colon cancer. I wasn’t feeling like myself and had issues with insomnia, feeling weak, was fatigued and overall, just feeling horrible. Months went by and I had cold sweats, sweating, dizziness and faintness. I was too stubborn and scared to go to the doctor.

I finally went to my family physician and told him about my symptoms. My blood pressure was high and my blood results came back — my hemoglobin level showed I was obscenely anemic. I was rushed by ambulance to a local hospital and given a blood transfusion. An endoscopy was performed and they believed bleeding ulcers were responsible for my anemia.

I wasn’t confident in the diagnosis so I made an appointment with a GI specialist who insisted that I get a colonoscopy. I was 40 years old by this time. After the scope, my physician came in to talk about the results, and I immediately noticed the concerned look on his face. He said I had thousands of polyps – and the biopsies showed cancerous and precancerous polyps. I had colon cancer and would require surgery to remove a large portion of my colon.

My surgeon went over the entire procedure for my colon resection — they removed 2/3 of my colon and several polyps from the remainder of my colon and rectum. I was told to have a follow up colonoscopy in five months. In July 2010, I had my second colonoscopy and once again the same procedure was performed. I woke up and nervously waited for the doctor. When I saw the look on his face it reminded me of how he looked after the first procedure. Again I had thousands of new polyps in the remainder of my colon and rectum. He recommended that I have the entire remainder of my colon and rectum removed.

I went to Mayo in search of a second opinion in August of 2010. I met my Mayo oncologists and was told that they agreed with the diagnosis of my local physicians and indeed confirmed that I have FAP, a genetic condition where more than 95% of people with it will have hundreds, if not thousands, of colon polyps by age 35. If it not recognized and treated, there is a 100% chance that a person will develop colorectal cancer.

I inherited FAP from my biological mother, with whom I have not had contact with since I was 3 years old. My father remarried and I never knew about this situation. I could have been checked earlier and possibly avoided all of this had I been privy to my biological mother’s family medical history.

My surgery was scheduled for October of 2010. I was scared and knew this would be a life changing surgery, but I wanted to do whatever it took to stay alive. Surgery lasted nine hours and when I awoke, I was in pain, all hooked up to IVs and tubes. It was hard to accept and face my ileostomy. I was hospitalized for 10 days. During that time, I was taught how to care for my stoma before I was discharged. It took over 6 months for what was my rectum to heal and stop draining — it was awful.

Forward to May 2011 — I didn’t think things could get or be any worse. I was to have follow up appointments and scans at the Mayo clinic every 90 days from then on. I learned to accept my ileostomy as it had saved my life for the time being but I was told to get my family affairs in order and given 2 years to live before the 2nd surgery. Needless to say, I was terrified.

I had my 90 day follow-up at Mayo in February 2012 and found myself faced with more medical issues — a precancerous mass was found in my duodenum and I had mets to my liver – 12 rounds of chemotherapy was my only hope.

I did my chemo locally. The first 3 rounds were okay, and then it got rough on my body. I was dehydrated easily due to having an ileostomy. After all 12 rounds were given, I had a PET scan and it showed that the lesions were no longer visible. I was relieved and eventually went into remission for a short time.

Then, on September 23rd, 2013 – my birthday – I was back at Mayo for my 90-day check up. Cancer was back and this time I was to have a liver resection and have my gall bladder removed. They took a wedge from each lobe of my liver. This surgery was very difficult as I experienced many post operation problems. I had an infection at both spots where my resection took place. I went home. More medical complications followed.

Two days later I couldn’t even stand and called my surgeon at Mayo and he said to get up there immediately – once I got to Mayo I learned that I was in kidney failure. More medical complications followed again but this time I almost died.

After 5 surgeries, 30 rounds of chemo, 4 recurrences of cancer and dealing with the complications of having an ileostomy, I think it’s safe to say that I’ve I’ve been through hell and back.

I believe my faith in God has gotten me through it all. I have been cancer free for 15 months now and living life to its fullest. This entire process has given me a different perspective on life — my hopes are to inspire people and support others who are dealing with cancer.

Sincerely,

Joe Jung

Joe Jung was recently selected as a model for the 2016 Colondar.


As many of you already know, March is Colon Cancer Awareness Month and I am seeking colon cancer patients who would like to share their stories. Please contact me at ihavelynchsyndrome@gmail.com if you’d like to share yours. Also, please note that March 22nd in Lynch Syndrome Awareness Day. Ellen Matloff from My Gene Counsel, Amy Byer Shainman, and I will hosting a another #Lschchat on that day, discussing what you “Need-to-Know about Colon Cancer” and we’re expecting a huge audience, full of patients, doctors, and advocates.

Please be sure to mark your calendar!

We hope you can join us! 

 

#LschatMarch 22TLOGO

#LschatMarch22nd

Yours,

xogox

 

Guest Blogger – Michelle Lykokapis

Guest blogger Healing_Art_Balance_s— Michelle Lykokapis 

I was a normal six year old girl enjoying a carefree life, laughing with my friends, and starting my second year at primary school. I was Daddy’s little princess and my life literally changed overnight. My childhood was ripped away from me and the harsh reality of Dad’s death stole my innocence. It all seemed to happen so fast — my tiny little head did not have time to take in the reality of it all. Having been diagnosed in December of 1977 with a secondary bowel cancer, my Dad died four months later at the age of 36 in April 1978. After my Dad’s death, I was thrown into a world of grief; I no longer had my Dad to comfort and to hug me. I no longer had my Dad to read me bedtime stories, to tuck me into bed at night, to praise me after my ballet concerts, or to hold my little hand when we went for a walk. Unbeknownst to me at the time, my Dad had Lynch syndrome.

Experiencing the death of a parent at a young age is certainly a character building experience and can be the catalyst for a young girl to develop “daddy issues”. These daddy issues manifested themselves in the form of  manipulation and promiscuous behaviors during my teenage years. I sought father figures in all my male relationships throughout my twenties, which only led to broken partnerships and a failed marriage. Independence was my armor and I gave power to the masculine side of myself and not necessarily in a healthy or productive way. I consciously quelled the very essence of my feminine side down. I feared I was weak, could easily be hurt, and was vulnerable — I was a survivor who needed to be in control.

My second marriage came with its own set of challenges. Despite our backgrounds and former spouses, our union seemed strong but after ten years of financial pressure, challenging teenage stepchildren and two babies of our own I had started seeking a way out. I began with riding my bike taking every opportunity to escape. I had commenced self-development class once a week in the hope of rediscovering myself, picked up a part-time job, which got me out of the house mainly at nights and on weekends because blended family time was finally taking its toll. I just couldn’t do it anymore. It broke my heart to be despised in my own home every fortnight; I was at a complete loss. The environment around me was becoming so toxic and I didn’t know how to fix it. If I really wanted to self sabotage my life the Universe was about to give me a permanent way out if I chose to accept it.

You know when you just know certain things? Well, my intuition knew that I had cancer even before the doctor’s appointment. My husband and I went up to the mountains and sat quietly in a little tea house. We held hands, cried and made a promise to each other that no matter what the diagnosis we would get through it together. We walked to a small gift shop and I was drawn to purchase a beautiful aquamarine pendant. I didn’t know at the time but the benefit of using this crystal is that it aids you to let go of emotional issues from your past that you have been holding on to. When I paid for the pendant we started talking to the owner of the shop, she just happened to ask what my star sign was. When the word “Cancer” fell out of my mouth I just knew the heaviness in my heart was a fear I wasn’t sure I was strong enough to face. It wasn’t just my star sign, that same afternoon my doctor confirmed I had stomach cancer.

During treatment and surgery something beautiful happened. That little girl that lost her Father resurfaced. She finally had an opportunity to grieve the loss of her Dad. She looked into her own children’s eyes at night and felt the heartache her Dad must have felt, knowing he was not going to see her grow up. She had time to sit on the floor and play with her boys. She had to hand all the masculine stuff over to her husband from the running of the house to the organising of everyone’s life. She only had one job – to get her adult self well so she could love and guide her little boys into men. The cancer diagnosis exposed the my feminine side that had been so carefully hidden high in my subconscious for so long, had finally re-emerged, and spilled back over into my life.

michelle_potter_spirit_artist

I took my power back, faced my own mortality, beat the statistics, and chose to live a life of self awareness. My feminine side was not to be feared. She is kind, nurturing, creative, healing, and most of all incredibly powerful. Allowing the creative side of myself to explore my emotions through art was my modality for healing during my illness. Painting was my passion prior to my illness but the work I was starting to produce began surprising me.

Yes, I have Lynch syndrome, but it does not take over every thought of every minute of my life. I am not my genes and I am most certainly not the cancer. I have used the experience to empower my life and to make a difference. I count, I am a survivor but I am also a creator, a healer, a mother and a wife. I am grateful for the knowledge of my genetics because I can now be a proactive, happier person who doesn’t sit in drama or sweat the small stuff. My perspective and ability to bring hope and healing to others through my experience and my artwork has changed my life. The cancer and the Lynch syndrome diagnosis have opened my eyes, saved my marriage and awakened me to possibilities far beyond anything I could have ever imagined.

 

Michelle Lykokapis

Melbourne, Australia

http://michellepotter.com.au

 

Clinical Trial at MD Anderson For Lynch syndrome

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Clinical Trial at MD Anderson For Lynch syndrome

The Molecular Predisposition to Hereditary Nonpolyposis Colon Cancer (HNPCC)

This study is currently recruiting participants.
Verified February 2015 by M.D. Anderson Cancer Center
Sponsor:
M.D. Anderson Cancer Center
ClinicalTrials.gov Identifier:
NCT01447199
First received: October 4, 2011
Last updated: February 16, 2015
Last verified: February 2015
  Purpose

The goal of this study is to understand factors which may influence risk for colorectal and other cancers in families. These factors include genetic variability, in combination with diet and lifestyle. In order to achieve these goals, we need to contact as many eligible participants as possible.

Condition Intervention
Bladder Cancer
Colorectal Cancer
Endometrial Cancer
Kidney Cancer
Skin Cancer
Uterus Cancer
Behavioral: Health and Diet Questionnaire

 

Study Type: Observational
Study Design: Observational Model: Family-Based
Time Perspective: Prospective
Official Title: The Molecular Predisposition to Hereditary Nonpolyposis Colon Cancer (HNPCC)
Further study details as provided by M.D. Anderson Cancer Center:
Primary Outcome Measures:

  • Time to Onset for Colorectal Cancer [ Time Frame: Overall study period up to 15 years. ] [ Designated as safety issue: No ]
    Primary endpoint is time to onset for colorectal cancer using Cox proportional hazard regression for determining the role that polymorphic variants of genes have on risk for development of HNPCC at an early age.

Biospecimen Retention:   Samples With DNA

Participants will have a single sample (8-10 teaspoons) of blood collected at M. D. Anderson, depending upon current health status. In the case of individuals not coming to the clinic, a blood drawing kit will be sent to the participant’s home, which will include instructions and a postage-paid return express mail envelope. If participant unable or unwilling to give a blood sample, saliva samples can be collected instead.

Estimated Enrollment: 2000
Study Start Date: September 1994
Estimated Primary Completion Date: September 2016 (Final data collection date for primary outcome measure)
Groups/Cohorts  Assigned Interventions
Gene Mutation

Group with increased risk for developing colorectal and/or other cancers as the result of an inherited gene mutation, family history of cancer, or an early age of cancer onset.
Behavioral: Health and Diet Questionnaire

Mailed questionnaires asking about foods eaten, cooking methods as well as overall health, and vitamin/medication use, taking several hours to complete.
Other Name: Survey
No Cancer History

Group with little/no personal or family history of cancer.
Behavioral: Health and Diet Questionnaire

Mailed questionnaires asking about foods eaten, cooking methods as well as overall health, and vitamin/medication use, taking several hours to complete.
Other Name: Survey
Spouses

Spouses of those who may have an increased risk for developing colorectal and/or other cancers as the result of an inherited gene mutation, family history of cancer, or an early age of cancer onset, or little/no personal or family history of cancer.
Behavioral: Health and Diet Questionnaire

Mailed questionnaires asking about foods eaten, cooking methods as well as overall health, and vitamin/medication use, taking several hours to complete.
Other Name: Survey
Detailed Description:

If you agree to take part in this study, you will have a single sample (8-10 teaspoons) of blood collected, depending upon current health status. The blood will be drawn at MD Anderson. If you cannot come to the clinic, a blood drawing kit will be sent to the your home, which will include instructions and a postage-paid return express mail envelope. Phlebotomy charges connected to this study will be paid by the study. The blood sample will be sent to a research laboratory at MD Anderson for analyses. If you are unwilling or unable to give a blood sample, you can give a saliva sample instead. In this case, a kit will be mailed to you with instructions for obtaining the saliva sample. A prepaid envelope will be included for its return. Participants who previously participated in Protocol PA11-0567 and provided a blood sample do not need to provide another blood sample. The previously stored blood sample collected by Protocol PA11-0567 may be used.

You will be asked to answer a series of questions. These questions will ask about foods eaten either one year ago or one year before the first diagnosis of cancer. There will also be questions about cooking methods as well as overall health, and vitamin and medication use. Some of the questions are personal, but all answers will be kept strictly private.

The questionnaire will be sent to your home via U.S. or express mail. It may take several hours to complete the survey, but there is no time limit on its completion. There are no right or wrong answers to the questions. A postage-paid return envelope will be provided for the return of the questionnaire.

Solid tumor material and colonoscopy specimens of normal tissue will be collected from participants requiring either colonoscopy or surgery for routine clinical reasons. The tumor fragments will be collected from specimens. Tissue required for a clinical pathology diagnosis will not be used for research purposes.

This is an investigational study. About 2,000 patients and family members will take part in this study. All will be enrolled at MD Anderson.

  Eligibility

Ages Eligible for Study: 18 Years and older
Genders Eligible for Study: Both
Accepts Healthy Volunteers: Yes
Sampling Method: Non-Probability Sample
Study Population

Referrals from Departments of GI Oncology, GI Medicine and Nutrition, GI Surgery, GYN Oncology, Cancer Prevention and from the Genetic Counselors at UT MD Anderson Cancer Center, families and spouses.

Criteria

Inclusion Criteria:

  1. All patients with a new referral for a diagnosis of colorectal cancer (adenocarcinoma) and/or HNPCC-related cancers at the UTMDACC will be considered potentially eligible for this study regardless of prior treatment.
  2. Families maintained at the UTMDACC Hereditary Colon Cancer Registry that have a known germline mutation in a mismatch repair gene or contain two or more first degree relatives diagnosed with CRC and/or any HNPCC-related cancers, one of whom must be less than or equal to 50 years at diagnosis.
  3. First-degree and more distant relatives of individuals diagnosed with CRC and/or any HNPCC-related cancers from either of the groups in 1 and 2 (above).
  4. Any patient diagnosed with CRC and/or any HNPCC-related cancers less than or equal to 45 years of age.
  5. Greater than or equal to age 18 at time of study.
  6. Able to provide informed consent to participate in this study indicating that they are aware of the investigational nature, in keeping with the policies of this hospital.
  7. Non-HNPCC quartets, defined as parents and two offspring who do not carry a mismatch repair gene mutation. These non-HNPCC quartets should have no personal history of cancer, nor cancer in any first degree relatives of the quartet members, nor history of trinucleotide repeat syndromes. Non-HNPCC parents in a quartet should be less than 34 years old at the time the offspring were born.
  8. Lynch Syndrome patients identified and recruited through Protocol PA11-0567 who opt into Optional Procedure B, which consents the patient to participate in this study.

Exclusion Criteria:

  1. Diagnosis of current major psychiatric disorder, per DSM-III-R (or DSM IV).
  2. Age less than 18 years at time of enrollment.

  Contacts and Locations

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies. Please refer to this study by its ClinicalTrials.gov identifier: NCT01447199

Contacts
Contact: Patrick Lynch, MD, JD 713-794-5073

https://clinicaltrials.gov/ct2/show/NCT01447199

Locations
United States, Texas
University of Texas MD Anderson Cancer Center Recruiting
Houston, Texas, United States, 77030
Sponsors and Collaborators
M.D. Anderson Cancer Center
Investigators
Principal Investigator: Patrick Lynch, MD, JD M.D. Anderson Cancer Center

 

My 10 Truths About Lynch Syndrome: Guest Blogger

 

samMy 10 Truths About Lynch Syndrome

Sam Rose is a 27 year old cancer survivor from England. 

Nearly five years ago when I was 22, I found out I would have to have my bowel removed due to colon cancer. I had the surgery in August 2010, and in January 2011 I had my ileostomy reversed and an internal pouch created. Then the genetic counselling started, and after a lot of testing it was discovered that I have Lynch syndrome.

That’s the potted summary of my story, though a lot has happened and sometimes I find it hard to deal with. I go through phases of not thinking about any of it and being absolutely fine, and then other times I get scared of having cancer again in the future, or upset about what has happened in the past (like having upsetting memories and flashbacks), or I just start dwelling for no real reason.

But I’ve decided it’s not okay to just let myself feel negative and get into a funk – I need to work at being positive and happier. So here are my ten truths about Lynch syndrome – ten things that I tell myself in order to keep upbeat and give myself a break:

1. I will always remember what’s happened, and that’s okay.

Memories of what has happened in the past are never going to go away, so I need to accept them and deal with them. It’s okay to sometimes be hit by a memory of treatment or diagnosis – it’s normal.

2. Every part of life can be affected by it, and that’s okay, too.

Lynch syndrome can affect every aspect of life, as I was reminded recently when my friends were talking about whether they’d like to have children. For me, having children would mean a having a caesarean, and definitely passing Lynch syndrome down to my kids (as I inherited defective genes from both of my parents). LS affects family life, relationships, work, and even leisure, as it has infiltrated so much of what I write about in my spare time. But this is all to be expected, too.

3. Most people around me don’t experience this.

Most of the people around me haven’t experienced what I have first-hand, so I can’t compare myself to others to determine how I should be feeling or figure out if what I feel is “normal”. Therefore, everything I think and feel is valid.

4. LS has shaped who I am as a person and changed my outlook on life. There is no reversing this.

Lynch syndrome has definitely changed my outlook on life. I feel more grateful for the health of my partner and myself, and I truly appreciate the time we spend together. It has also made me want to have more experiences – there is no “maybe one day” for me now. There are plans, and determination to travel and experience things while I can, because who knows what will happen in the future?

 5. Sometimes I need to work at being happy and coming out of a funk.

If I find myself dwelling on things, I don’t always just come out of it naturally. I need to actively make the decision to be more positive, and do something to distract myself.

 6. I need to be kind to myself, and not put myself down, call myself names or judge myself.

I admit, I haven’t been very nice to myself recently. I’ve been judging myself for still feeling upset when I thought I should have been “over it” by now. But I’ve decided to try to be kinder to myself, to stop judging, and to instead write down one positive thing about myself each day to try to get my confidence back.

7. Some triggers can be avoided.

There are some triggers that make me think about cancer and my experiences, which can be upsetting. There will always be some that I don’t anticipate, but I do my best to stay away from them whenever I can. If I come across a trigger and it isn’t anything that’s helpful or informative, I try to avoid it. (For example, I stopped following some people on Facebook because they frequently posted triggers such as “share this photo if you want cancer to be cured”. Not something I need to see.)

8. Distractions are good.

When I feel bogged down and particularly negative, talking to someone about something else, playing a game or watching my favourite TV show helps a lot.

 9. It’s okay to think about it, but not to wallow.

I have been known to wallow so much that I lose sight of what I was upset with in the first place – I will stop wallowing so deeply that I can’t even remember why or how I got there. I will exercise my control over this.

10. We are not on our own.

It helps to take to the Internet to find similar people to read about or chat to if I’m feeling down (or even if I’m not). Just beware of that wallowing.

I hope that remembering these points and putting them into practice will help me to become more positive and happier in general.

What are your Lynch syndrome truths?

 

Sam blogs about Lynch syndrome and writes poetry on her website, http://www.writersam.co.uk.

You can also get in touch with her on Twitter: @teh_samby.

 

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