I Have Lynch Syndrome

Started by anonymous, February 09, 2015
12 replies for this topic
anonymous

N/A
N/A
Posted on
February 09, 2015
My father had colon cancer in his 40s, but fortunately it was caught early and he managed to live into his 70s. Twenty years ago, my oldest brother died at the age of 36 from colon cancer – diagnosed too late to treat. I started to suspect a genetic component to my family’s colon cancer and began having regularly scheduled colonoscopies while in my 20s.
 
A few years ago my other brother developed colon cancer in his late 40s. Fortunately his doctor knew about Lynch syndrome and recommended he be genetically tested. He tested positive – since each child of a parent with Lynch syndrome has a 50/50 chance of inheritance, I underwent genetic counseling followed by testing. I have Lynch syndrome, too, but fortunately have never had any cancers.
 
Lynch syndrome is caused by germline mutations in the DNA mismatch repair genes. This mutation has substantially increased risks of early onset cancers of the: colon and rectum, stomach, intestine, liver, pancreas, gallbladder ducts, upper urinary tract, brain, skin and if you are male, the prostate. Women with Lynch syndrome are also at risk of developing cancer of the endometrium, ovaries and breasts. Many of the Lynch syndrome cancers present themselves before one turns 50, and occasionally people are afflicted with more than one cancer. Understandably, people who are diagnosed with Lynch syndrome tend to find this sudden and apparent “early death sentence” emotionally taxing and difficult to reconcile.
 
My educational background included biology and a knack for research, thanks to the Internet and university access, I read all I could find. As a result I quickly took measures to decrease my chances of developing cancer of my reproductive organs and had them removed, primarily because current screening measures for ovarian cancer are not reliable. While I was trying to prevent cancer on one hand, I was opening myself up to a host of other medical issues for which I was unprepared. Being thrust into early menopause overnight, I developed other symptoms for which I wasn’t expecting and which none of my doctors warned me about: nausea, vomiting, lethargy, depression, hair loss, thyroid issues and more.
 
My negative experience from the prophylactic oophorectomy and my Lynch syndrome test result was the impetus for my blog: ihavelynchsyndrome.com. I created a website which addresses the emotional issues of holding a mutation for hereditary cancer, a site that I dearly wish would have existed when I was diagnosed with Lynch syndrome.
 
After spending time seeking out knowledgeable doctors for the various annual screening measures and tests, as required for Lynch syndrome, I found that the Mayo Clinic in Rochester, Minn., had all the requisite specialists linked through my patient coordinator and nurse. It appears that not many other hospitals have this ability to put specialists who discuss my specific condition and test results on my individual team. I could have all of my testing done within a matter of two days and would find tremendous solace knowing I was in stellar medical hands. My annual exam at the Mayo Clinic includes the following:

•     Blood test
•     Urine test
•     CA-125 blood test
•     Mammogram
•     Colonoscopy with blue dye to detect flat polyps which are common in Lynch carriers
•     Endoscopy
•     Skin exam
•     Pelvic ultrasound

My blog has evolved over the past few years, and I have now applied for a not-for-profit status.
 
My goal is to educate doctors around the globe about helping to diagnose Lynch syndrome and to continue to help the Lynch syndrome patients who reach out to me; I help them find genetic counselors, doctors, clinical trials, psychologists, psychiatrists and medical institutions that are knowledgeable about Lynch syndrome. A great deal of time is spent listening to the patients who reach out to me – many of them just want someone else to talk to who can empathize with their situation.
 
With time, medical and psychological intervention, lots of reading for perspective, the support of family and friends, through my advocacy efforts, and living the healthiest lifestyle possible, I have come to terms with my diagnosis.
 
I have found that helping others in turn has helped me.

Yours,
Georgia Hurst, MA
President and Executive Director of ihavelynchsyndrome.com

Please connect!
Twitter:  twitter.com/ShewithLynch
Facebook: facebook.com/ihavelynchsyndrome
LinkedIn: linkedin.com/profile/view?id=19547504
Report

Page 1 of 2 1 2

Anonymous

Member
0 Replies
Posted on
February 09, 2015
My father had colon cancer in his 40s, but fortunately it was caught early and he managed to live into his 70s. Twenty years ago, my oldest brother died at the age of 36 from colon cancer – diagnosed too late to treat. I started to suspect a genetic component to my family’s colon cancer and began having regularly scheduled colonoscopies while in my 20s.
 
A few years ago my other brother developed colon cancer in his late 40s. Fortunately his doctor knew about Lynch syndrome and recommended he be genetically tested. He tested positive – since each child of a parent with Lynch syndrome has a 50/50 chance of inheritance, I underwent genetic counseling followed by testing. I have Lynch syndrome, too, but fortunately have never had any cancers.
 
Lynch syndrome is caused by germline mutations in the DNA mismatch repair genes. This mutation has substantially increased risks of early onset cancers of the: colon and rectum, stomach, intestine, liver, pancreas, gallbladder ducts, upper urinary tract, brain, skin and if you are male, the prostate. Women with Lynch syndrome are also at risk of developing cancer of the endometrium, ovaries and breasts. Many of the Lynch syndrome cancers present themselves before one turns 50, and occasionally people are afflicted with more than one cancer. Understandably, people who are diagnosed with Lynch syndrome tend to find this sudden and apparent “early death sentence” emotionally taxing and difficult to reconcile.
 
My educational background included biology and a knack for research, thanks to the Internet and university access, I read all I could find. As a result I quickly took measures to decrease my chances of developing cancer of my reproductive organs and had them removed, primarily because current screening measures for ovarian cancer are not reliable. While I was trying to prevent cancer on one hand, I was opening myself up to a host of other medical issues for which I was unprepared. Being thrust into early menopause overnight, I developed other symptoms for which I wasn’t expecting and which none of my doctors warned me about: nausea, vomiting, lethargy, depression, hair loss, thyroid issues and more.
 
My negative experience from the prophylactic oophorectomy and my Lynch syndrome test result was the impetus for my blog: ihavelynchsyndrome.com. I created a website which addresses the emotional issues of holding a mutation for hereditary cancer, a site that I dearly wish would have existed when I was diagnosed with Lynch syndrome.
 
After spending time seeking out knowledgeable doctors for the various annual screening measures and tests, as required for Lynch syndrome, I found that the Mayo Clinic in Rochester, Minn., had all the requisite specialists linked through my patient coordinator and nurse. It appears that not many other hospitals have this ability to put specialists who discuss my specific condition and test results on my individual team. I could have all of my testing done within a matter of two days and would find tremendous solace knowing I was in stellar medical hands. My annual exam at the Mayo Clinic includes the following:

•     Blood test
•     Urine test
•     CA-125 blood test
•     Mammogram
•     Colonoscopy with blue dye to detect flat polyps which are common in Lynch carriers
•     Endoscopy
•     Skin exam
•     Pelvic ultrasound

My blog has evolved over the past few years, and I have now applied for a not-for-profit status.
 
My goal is to educate doctors around the globe about helping to diagnose Lynch syndrome and to continue to help the Lynch syndrome patients who reach out to me; I help them find genetic counselors, doctors, clinical trials, psychologists, psychiatrists and medical institutions that are knowledgeable about Lynch syndrome. A great deal of time is spent listening to the patients who reach out to me – many of them just want someone else to talk to who can empathize with their situation.
 
With time, medical and psychological intervention, lots of reading for perspective, the support of family and friends, through my advocacy efforts, and living the healthiest lifestyle possible, I have come to terms with my diagnosis.
 
I have found that helping others in turn has helped me.

Yours,
Georgia Hurst, MA
President and Executive Director of ihavelynchsyndrome.com

Please connect!
Twitter:  twitter.com/ShewithLynch
Facebook: facebook.com/ihavelynchsyndrome
LinkedIn: linkedin.com/profile/view?id=19547504
Report
Anonymous

Member
0 Replies
Posted on
February 10, 2015
YES!!!
Report
Anonymous

Member
0 Replies
Posted on
February 10, 2015
Georgia, I am sorry to hear about your family losses. Your advocacy is truly selfless. You have provided me with many answers and outlets for information. I look forward to reading more of your articles, and helping in any manner I can. In Health- Alan M. Blassberg
Report
Anonymous

Member
0 Replies
Posted on
February 10, 2015
I have Lynch Syndrome and I appreciate Georgia's dedication to educating people about Lynch. It is stressful attempting to schedule your screenings, or even having to fight to get them, but the emotional burden of worrying about your health, your family, and what will happen when (yes WHEN) you get cancer can be overwhelming. The more aware that medical professionals are, the less burden the patient needs to shoulder by themselves.
Report
Anonymous

Member
0 Replies
Posted on
February 10, 2015
Wow! Awareness of Lynch Syndrome should be promoted and supported by all medical professionals. Considering the availability of colonoscopies, genetic testing with counseling and many other screening and preventative measures, many lives can be saved. Thanks to Georgia Hurst for trying to bring this awareness to the forefront, many will owe their lives to her.
Report
Anonymous

Member
0 Replies
Posted on
February 10, 2015
Fantastic article Georgia! Your strength, resolve and generosity are enormous! I am sure your courage in speaking out about your difficult experiences and journey will serve as inspiration for so many others and solace in their darkest hours. Thank you for sharing yourself with us!
Report
Anonymous

Member
0 Replies
Posted on
February 10, 2015
Thank you Georgia for your tireless advocacy! You connect the dots about hereditary cancer and Lynch Syndrome for so many on a daily basis. It is wonderful to see you and your insight featured in CURE! XO- Amy @BRCAresponder
Report
Anonymous

Member
0 Replies
Posted on
February 11, 2015
My husband died from Lynch Syndrome diagnosed too late. He was 43. He had been to doctors often before the day he was diagnosed. Last resort was colonoscopy which because of his age was not on the table. After his diagnosis, we visited Philadelphia for a second opinion. My in laws are proactive due to this diagnosis. Thanks for the renewed awareness!
Report
Anonymous

Member
0 Replies
Posted on
February 12, 2015
Well done lovely Georgia. I am so proud of all that you do raising awareness about Lynch Syndrome Worldwide. You know that our beautiful Laura @paperdollybird died as so called medical professionals dint listen to her symptoms, dismissed her and told her "you are too young to have colon cancer" which meant the symptoms were there but they ignored her. aura died just age 31 and I am struggling to cope without my beautiful daughter in my life. We as a family have still not been offered the test for Lynch Syndrome and I am about to undertake steps to rectify this as soon as I am well enough to do so. You know I am so proud of you lovely Georgia and all you are doing to raise awareness and to get the message over that early detection is key and people of all ages should be listened to when they present with symptoms, do the correct tests early to rule cancer in/out and save lives as you are doing. hank you for raising awareness. Take care lovely Georgia Beautifulmumsie aka Lesley in Scotland
Report
Anonymous

Member
0 Replies
Posted on
February 13, 2015
Thank you Georgia for all you do! I went yesterday for my 3rd mammo and ultrasound of my left Breast over the past eight months. I now need an MRI. In March of 2013 I had a lumpectomy (and the next month one on my right) all during the same week of my Lynch Sundrome testing. The left Breast lump was precancerous and has now developed a "lipid" or "oil" cyst along with a new palpable(?) cyst which also needs to be removed. This will make a total of 8 lumpectomies between both breasts since my first Breast Cancer diagnosis in 1992. Yesterday when the BREAST Technician was asking me questions, she said wow you have a lot of different kinds of cancer (Breast, skin and uterine). I told her I have an 87% chance of colon cancer and need that removed also. I then told her I have Lynch Syndrome. She asked what that was!!! She is the lead tech at this Breast imaging center! People only think woman with Breast cancer carry the BRAC Gene and it is frustrating when you have to educate your own team! I gave her your site to educate herself and the others in the office though the ultrasound knows me well and knows about Lynch. Please continue, as we all will, to write your articles, have our tweet chats, etc to educate the medical world. I am tired and honestly scared I will miss something or have the people testing me blow things off not understanding a small issue is part of a larger picture! Thank you again! I will survive. I am a warrior! @NJIvoryGirl
Report

Page 1 of 2 1 2

You must log in to use this feature, please click here to login.