THE TIME HAS COME FOR …

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The time has come for ihavelynchsyndrome.org

The time has come. This blog has evolved tremendously over the past two years; what started off as a hellacious forced menopause story as a result of having Lynch syndrome, has become one the most successful Lynch syndrome sites in the world. This blog is evolving and Lynch syndrome advocacy efforts need to expand and evolve, too; an evolution which will require a collaborative effort from all involved: other Lynch syndrome advocates, other hereditary cancer advocates, doctors, genetic counselors, genetic testing companies, hospitals, etc. — our responsibility to patients is never-ending.

My Lynch syndrome advocacy will now become my life’s work. While I will continue to blog in 2015, I will be doing more global outreach to doctors, genetic counselors, continue utilizing social media, writing for more publications and other organizations; but most importantly, I will continue to attempt to empower and comfort those with Lynch syndrome.

I will be taking the next few weeks off in order to change ihavelynchsyndrome.com to ihavelynchsyndrome.org. Ihavelynchsyndrome.org will be a non-profit which will continue to assist those who reach out for emotional support and information; to emphasize the need for medical practitioners to watch for family histories of early-onset cancers; to highlight the importance of qualified genetic counselors in the genetic testing process; to stress the importance of genetic testing; to link research and resources internationally; and much, much more.

I want to thank Dr. Henry Lynch and Dr. Patrick Lynch; they have both been exceptionally supportive in my decision and I am grateful they have both agreed to assist me in my ambitious endeavor.

Last but not least, this is Lisa Darling, a dear friend of mine. Her voice is almost as extraordinary as her being. If angels do exist amongst us, then she is definitely one of them.

I wish you all the best this holiday season, along with loads of health, happiness, and peace in 2015.

Yours,

Georgia

 

 

 

10 Things I Wish I Had Known Before My Hysterectomy

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10 Things I Wish I Had Known Before My Hysterectomy:

  1. You are a unique individual and everyone responds to medical procedures differently. Your age, your health, your attitude, and a plethora of other factors will determine how you fair after the surgery. Please keep this in mind and do not compare yourself to others. A 50-year-old woman, who is near, if not in menopause, will have a much different experience than someone who is 30 or 40 and far away from menopause. Going through menopause gradually is one thing; being thrown into through surgical menopause is another.
  2. If you have Lynch syndrome, please be sure to discuss hormone replace therapy with your doctor and not solely for estrogen replacement. You may also want to consider doing some research on testosterone and progesterone and incorporate those into your HRT, too. I wish I would have known about the importance of this cocktail of hormones prior to my surgery as I would have began taking them right away.
  3. Be sure a gynecological oncologist if possible, and not your gynecologist, performs you surgery. Gynecological oncologists are extensively trained for surgery and then some. You want someone with tremendous experience in this realm; do some research and don’t be afraid to ask lots of questions.
  4. Ask your doctor what kind of hysterectomy and oophorectomy will be performed. The FDA has recently recalled the Power Morcellator, which has been used in many surgeries, but doctors are still using it due to the “less invasive” process. Power Morcellators, a device commonly used in hysterectomies (the 2nd most common procedure for women in the US), have recently come under scrutiny from the FDA. Power Morcellators are used to cut tissue into small pieces to be removed from the body. The problem is that if the tissues carry undetected cancer, it’s being spread within the abdomen and pelvis during these procedures. Many women are battling uterine cancer as result of Power Morcellators being used during their hysterectomies, and shockingly,the average life span following accidental morcellation of a cancerous tumor is only 24-36 months. To read more about this, please visit this post:http://www.ihavelynchsyndrome.com/power-morcellator-hysterectomy/#.VIjYQb7u7l0. For the latest news piece on this, please go here: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm393689.htm.
  5. You may want to consider talking to a therapist or psychiatrist prior to your surgery. You may initially feel okay for the first few weeks after your surgery but it will take about 2 months for the estrogen to drastically decline in your system. Along with HRT, an antidepressant may be helpful in getting your through the roller coaster of emotions you may experience following the surgery. Most antidepressants take a few weeks to kick in and it would probably be in your best interest to start it before the surgery if need be. Also, do not be afraid to ask for something to help you deal with anxiety. Chances are you have a lot to deal with; just finding out you have Lynch syndrome; worrying about your potential cancer risks; dealing with family members who have or have had cancer; fretting over your children possibly having this; and finally worrying about how the prophylactic hysterectomy/oophorectomy is going to affect you. Your concerns and anxiety are completely warranted; hopefully your anxiety will lessen with time.
  6. Prepare for your recovery period. You may only be in the hospital for a day or two but you may be a bit out of sorts for a week so. Freeze some nutritious meals, ask people to help you out with the dog and the kids if possible. You will need to spend that time resting so that you heal faster.
  7. Get a Boppy pillow to sit on, as it may be difficult for you to sit for several days. Trust me on this one.
  8. You mustn’t regret your decision to remove your ovaries. Ovarian cancer screening is very poor and unfortunately is usually detected when it’s too late. You are empowering yourself and taking some control over your genetic destiny by having this surgery. Read books on ovarian cancer if you need some perspective. My favorite is Susan Gubar’s book, Memoir of a Debulked Woman. I read it awhile back and wrote a review of it. Please click here if you’re interested in reading about it: http://www.ihavelynchsyndrome.com/book-review-susan-gubars-memoir-of-a-debulked-woman-enduring-ovarian-cancer-ihavelynchsyndrome-com/#.VIjiEL7u7l0
  9. As mentioned in my previous post, even though I no longer have my ovaries, I must have a CA 125 blood every six months for ovarian cancer screening test due to microscopic tissue, which may have been left behind as a result of the surgery. A CA 125 test measures the amount of the protein CA 125 (cancer antigen 125) in your blood. More often than not, the elevated levels usually present themselves when ovarian cancer is in its advanced stages. You will also still be required to have a gynecological exam and have the vaginal cuff examined on a yearly basis.
  10. It may take time to find a new normal and get used to your new body. Be patient.

Yours,

Georgia

Any information and resources on ihavelynchsyndrome.com should not be used as a substitute for professional medical care. You are encourgedd to work with your medical care provider for answers to your personal health questions. 

A Letter to My Gynecologist; 3.5 Years After My Prophylactic Hysterectomy and Oophorectomy

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A Letter to My Gynecologist; 3.5 Years After My Prophylactic Hysterectomy and Oophorectomy

Dear Dr. __________:

Three and a half years ago I came to you and told you I had been diagnosed with Lynch syndrome; a syndrome of autosomal dominant inheritance which predisposes one to one or more of a dozen of early onset cancers, specifically of the colon, uterus and endometrium. After my visit with my genetic counselor and our discussion, we agreed that the best thing for me to do, in order to improve my chances of survival, would be for me to undergo the prophylactic hysterectomy and oophorectomy. You assured me that surgery would be without complications and that I would just need a small dose of estrogen to deal with the menopausal symptoms. You completely minimized what would become of me.

I was a strong, healthy, happy, vibrant, young 40-year old who was in graduate school, who loved running, and was in the prime shape of my life. Post surgery, I became very sick. I suffered from migraines, lethargy, vomiting, nausea, and severe depression. I came to you several times, begging you to do something to help ameliorate these symptoms; but you and your colleagues wanted me to believe that it was just all in my head. You tried tweaking the estrogen dosage a bit for about a year. It didn’t help.

I will never forget the day you shook your head at me and said, “I don’t understand why you’re having these issues, no one else seems to have such difficulty with this!” Well, I’m afraid I am a unique human being, as we all are, and your “one size fits all” approach to medicine is inappropriate and insulting. After conducting my own research about hormones, I begged you to consider adding progesterone and testosterone to my HRT. I was deeply saddened by your lack of concern and support for my new found health issues as I had spent nearly a decade under you care; you cared for me whilst I was pregnant, you delivered my son, and you had provided me with exceptional care for many years — I thought we had a great rapport — but my pleas for help fell upon your deaf ears. You refused to help me and with that, I decided it was time to find a doctor who would actually listen to me.

I tried everything to help myself feel better. I ate well, tried to exercise, saw an acupuncturist, a therapist, a psychologist, a psychiatrist, and practiced meditation; but deep down I knew the majority of my issues were biochemical due to the loss of my ovaries. I wanted to peel my skin off. I felt that I was not longer suited for the body I had been left with and felt defeminized. I no longer felt like a woman but more like an “it”; I wanted out — I wanted to die because I could not fathom spending the rest of my life in this discombobulated, sickly state. I had prevented potential malignancy to my reproductive organs but at a huge cost for which I was unprepared.

I sought out various doctors until I found one — an integrative medical specialist — who was willing to try anything to help me feel better. I told him I was interested in incorporating testosterone and progesterone into my HRT. Progesterone is not solely essential for pregnancy as many doctors believe. Progesterone stimulates bone growth and is a natural diuretic and antidepressant; it also neutralizes the release of the stress hormone known as cortisol. Testosterone is important for a woman’s libido, maintains muscle mass, and energy. I knew that there could be implications for taking HRT but much of the research conducted in this area has been on postmenopausal women; not premenopausal ones. I became more interested in the quality of my life rather than the quantity of it. I just wanted to feel better and was willing to do anything to get there. After a few weeks of adding testosterone and progesterone to my HRT, I began to feel much better. My mood improved; most of my depression was lifted; I slept better; my libido began to return; my lethargy lessened, and many of the other menopausal symptoms I suffered from gradually disappeared.

I am 3.5 years out from my surgery and I am still not the same person. The surgery has impacted me in a plethora of ways: emotionally, psychologically, and physically. My personality has changed; I am more introverted and prefer to spend time alone. I still feel defeminized and have compensated for this by growing my hair longer, wearing more makeup, and wearing clothing which accentuates my curves. I do not have the energy I once had and must nap most days. With the passage of time and with the help of additional HRT, there have been significant improvements to my health. Even though I no longer have my ovaries, I must have a CA 125 blood every six months for ovarian cancer screening test due to microscopic tissue which may have been left behind as a result of the surgery — a major detail which you failed to mention before the surgery. A CA 125 test measures the amount of the protein CA 125 (cancer antigen 125) in your blood. More often than not, the elevated levels usually present themselves when ovarian cancer is in its advanced stages. I have reconciled my diagnosis and my new body. I have accepted my genetics and am vigilant with my health and annual screenings for the various cancers which have the potential to kill me.

What I want you to take away from this piece is that every one is unique and will respond to medical procedures differently. Removing a patient’s body parts, especially bits like elusive ovaries may hold tremendous implications and complications. Along with forced surgical menopause, women with Lynch syndrome are dealing with a plethora of other issues and are faced with anxiety, fear, uncertainty, and possibly dealing with other family members who are sick or have died from Lynch syndrome related cancers; more importantly, they more often than not have to fret over their children holding this horrific genetic mutation. Sometimes a patient’s issues are beyond your realm of help or comprehension. Just because you may not understand the issues a patient presents doesn’t mean they doesn’t exist. Please do not dismiss a patient’s emotions or symptoms and tell them that it’s all in their head. Listen to them. If you cannot seem to help them, seek out professionals who can and will. Lynch patients have enough to deal without you minimizing their feelings and physical issues.

If you are a doctor and are reading this, please note that there are 600K – 1 million people in the United States with Lynch syndrome and yet only 5% know it. Early onset cancers within a family, specifically of the colon, endometrium, and ovaries should concern you. But Lynch doesn’t stop there; there are implications for many other organs and body parts: the stomach, the hepatobiliary tract, urinary tract, small bowel, breasts, prostate, the brain, and more.

Please go to: http://www.cancer.net/cancer-types/lynch-syndrome for more information.

 

December 4th is my brother Jimmy’s birthday. He would have been 56 years old; he lost his life to colon cancer due to Lynch syndrome.

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Yours,

Georgia Hurst

ihavelynchsyndrome.com

 

 

 

AFA Lynch Association President — Maria Ricart

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Maria Ricart of The AFA Lynch Syndrome Association

I had the distinct pleasure of meeting Maria Ricart, the President of AFA Lynch Syndrome in Barcelona this past week. She is a four-time cancer survivor; yes, that’s right, four times! I can’t fathom enduring cancer once, let alone four times. She has endured uterine cancer — twice —  followed by colon cancer, and then lymphoma. FYI: lymphoma is typically not on the litany of the Lynch syndrome cancers. The good news is that she has been without cancer now for 6 years. You cannot help but fall in love with her as soon as you meet her; she is a very kind-hearted, warm, sharp woman, with impeccable taste in lavender colored fingerless gloves. The pic above is of her at a cafe she took me to on my first day in Barcelona.

I went to Barcelona for two reasons; to attend the AFA Lynch Syndrome Conference, but more importantly, to meet Maria in order to figure out how we can collaborate on a global level in regards to spreading Lynch syndrome awareness. We recognize that current methods of Lynch advocacy are not globally extensive and need to evolve tremendously; with the amazing technology we have today, there is absolutely no reason why we cannot do that. She and I share much in common and are on the same page regarding many of the issues surrounding Lynch syndrome.

I think discussing medical procedures and advancements at conferences is great, but truth be told, most laypeople don’t truly understand what the implications for such things entail. This is why is it is so important to seek out doctors who know more about Lynch than you and are at the forefront of the cutting edge research. You have enough to fret over without having to worry about if your doctor is performing the correct colonoscopy and whatnot. What differentiated this conference from others was the great amount of time spent on discussing the emotional implications of having Lynch syndrome; much of what was discussed are many of the emotions I frequently mention in my blog.

Muchas gracias for having me, Maria! You made me feel very welcomed! 

If you want to learn more about Maria’s Lynch Syndrome Association, please click here: www.afalynch.com

On a side note … UCSF is conducting a study on the effects of early menopause in BRCA + women who undergo prophylactic hysterectomies and oophorectomies. This is huge and I cannot wait to see what they conclude:

As part of the three-year trial, about half the participants will have chosen to have ovarian surgery. Beforehand, each will receive full physical examinations and then will be examined regularly afterward to monitor for early signs of cardiovascular disease as well as bone strength, and undergo various tests and screenings. In addition, each will be asked to answer questionnaires about their sexual and mental health.

The women who have opted not to undergo surgery will be monitored in the same way. So far, about 60 women have enrolled in the study.

Scientists say the research is important because they need to understand what risks these preventive surgeries and the premature loss of hormones have on developing osteoporosis or heart problems later in life.

“Women who undergo these surgeries to prevent cancer may be taking on risks … that could lead to perhaps a premature death from these non-cancer-related reasons,” said Dr. Vanessa Jacoby, UCSF obstetrician and gynecologist and principal investigator of the study.

They also want to understand whether premature menopause from surgery and its side effects differ from those experienced by women who naturally experience early menopause.

“We know that by telling them to do these surgeries, we save lives,” said Dr. Mindy Goldman, UCSF gynecologist and co-investigator of the study. “What we don’t know is how these surgeries affect other health outcomes.”

Please click on the link below to read the piece in its entirety.

http://m.sfgate.com/health/article/UCSF-to-study-early-menopause-vs-preventive-5899772.php

I’ve always said there are implications to removing such things as body parts, especially precious parts such as ovaries. We may be preventing cancer on one hand but are possibly subjecting ourselves to a host of other health issues. Looking forward to the results of this study. Perhaps the results of this study will be the impetus for better ovarian cancer screening measures, who knows?

Thanksgiving is this week in the States. I hope you have much to be grateful for … I know I sure do. And don’t forget to discuss your family medical history at dinner.

Click here for more information and help with this: http://www.ihavelynchsyndrome.com/family-medical-history/

 

Infinite love and gratitude out to my family and friends.

I don’t know what I’d do without you. 

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xogox

Getting into Mayo Clinic and The AFA Lynch Conference

Mayo-clinic-logoI speak to many people, every week, many of whom have been recently diagnosed with Lynch syndrome. The problem is that many of them have been tested without having a conversation with a genetic counselor. This is highly problematic for many reasons. Their doctors or oncologists do not have the time to go over the implications of having Lynch. Nor do they know or understand the emotional gravity of the situation and the number of other tests, which must be performed annually, in order to screen for Lynch syndrome related cancers.

Aside from blogging, I help people find genetic counselors who can assist them in their journey in hopes of keeping them as healthy as possible for as long as possible. I encourage those with good insurance and can afford to travel to visit places like Mayo Clinic where all of the necessary screening for Lynch related cancers may be done within a couple of days.

Some people say they do not want to take the time off of work to devote two or three days for testing and would rather do it over a period of time. You must do what works best for you; but in my opinion, if you can afford to get it all done at once and be given a clean bill of health, you will stress less. Besides, the “one stop shop” such as Mayo knows what they’re doing. You do not have to fret about whether or not you are properly being screened.

So how do you go about getting into places like Mayo Clinic, you ask? First of all, call them and tell them you have Lynch syndrome and that you would like to see someone who specializes in Lynch. Your doctor will determine which annual screenings are best for you following your initial consult. I see Dr. Boardman and her nurse, Sheila Buhler in Rochester, MN. I call Mayo up a couple of months prior to my due date for my annual screenings and tell them I need to come in for all of my tests. The appointment coordinator does her best to accommodate my schedule and tries to fit all of my tests within a couple of days. I do not have to tell them which tests I need, my doctor knows what needs to be done. For more information about Mayo Clinic, please go here: http://www.mayoclinic.org.

These are the tests which I have done annually:

  • Blood test
  • Urine test
  • CA-125 (I no longer have my ovaries)
  • Mammogram
  • Colonoscopy with blue dye
  • Skin exam
  • Endoscopy
  • Pelvic ultrasound
  • CT Scan of my chest due to elusive nodules in my lungs
  • and last time, I had a cystoscopy due to the presence of blood in my urine.

This litany of tests may vary depending on your family history, whether or not you’ve had prophylactic surgery, if you’ve already had cancer, which mutation you hold, and your doctor. But I do know that most of these tests are imperative for annual screening. If you are not comfortable with the screening protocol your doctor would like you to have, talk to them; if they refuse to budge then perhaps it’s time to find another doctor. Things like your annual colonoscopy are non-negotiable. 

If you need to find  a genetic counselor, I highly recommend you go the National Society of Genetic Counselors website at: http://nsgc.org/p/cm/ld/fid=164. It will assist you in finding a counselor nearest to you and they will most likely help you find the right doctors, medical institutions, and any other support you may need.

The one thing, which truly concerns me, is that globally, we are not on the same page regarding screening measures. This is highly problematic although not surprising considering we lack cohesiveness across the board on many things. Many people in other countries tell me they’re concerned they are not receiving proper care and that their doctors are not as vigilant as some of the other doctors who are highly knowledgeable about Lynch syndrome around the world. Many factors contribute to this, particularly things like cultural beliefs, social stigmas, different medical practices within countries, having to wait to see a doctor, having doctors who are ignorant about Lynch, the inability to see specialists, and so forth. If we are to truly committed to saving the lives of those with Lynch syndrome around the world then we must work together to change this.

I am in Spain this week for the AFA Lynch syndrome conference which will take place on Saturday. I am looking forward to meeting those who will be attending and hearing their perspectives on screening and other issues, which surround Lynch syndrome.

I am honored and flattered that AFA Lynch and Myriad Genetics wanted to include me in on this very important conference.

Much gratitude to both!

Cathedral in Barcelona, Spain

AFA’s Lynch is a fantastic organization and their mission includes the following:

  • Help advance research into Lynch Syndrome or HNPCC.

  • Disseminate and exchange the results of the very latest research in the field.

  • Contribute to reducing the psychological impact both at the moment of recieving the diagnosis and throughout the carrier’s life, supporting the creation and/or specialisation of competent healthcare professionals in this field.
  • Promote policies aimed at prevention and the regular and systematic surveillance of patients, as well as provide information about the different treatment options currently available.

  • Provide support and information to families including professional advicesurrounding these types of genetic illnesses.

  • Develop actions and activities for both lay and professional audiences to increase awareness and knowledge about the syndrome and how best to manage it.   

Please go to their site for more information: http://www.afalynch.com.

I will let you know all about the conference in a few days.

Yours,

G

Happy 12th Birthday, Nicholas!

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Happy 12th Birthday to my beautiful little man.

I’m so proud of the amazing, kind, loving, person you’ve become. 

You take my breath away. Every. Single. Day. 

I love you. I love you. I love you. 

xoMOMox

Book Review: Cancer is a word, not a sentence. And the Misinformed Melissa Etheridge

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I have read a lot of books in the past few years regarding genetic mutations, various cancers, stories of survivorship, etc., but think I have finally found the “Cancer Bible” in the book: Cancer is a word, not a sentence. If you have recently been diagnosed with cancer you should consider getting this book. The book came out in 2006 but I think it’s a fantastic guide for helping you get through your cancer journey — it helps one understand what to expect (for the most part) when they have been diagnosed with cancer. If you’re interested in purchasing it, Amazon has it used for under $3 plus shipping, please click here for the link: http://www.amazon.com/Cancer-Word-Not-Sentence-Practical/dp/B005GNM824. This book is written by Dr. Buckman, an esteemed medical oncologist, who has also written the book: What You Really Need to Know About Cancer.

Part one discusses, “What’s Going to Happen to Me Next?” and holds a discussion about what cancer actually is; Part Two, “What’s Treatment Like?” discusses the primary types of treatment: surgery, radiotherapy, chemotherapy, biologic agents, and the benefits of clinical trials; Part Three, “Isn’t There and Easier Way?” talks about complementary medicine; Part Four, “How Do I Get Back on Track?” deals with recovery and returning to some sense of normalcy after and during your treatment. This book also addresses a plethora of topics including dealing with nausea, religion, recovery, sexual issues, and many other topics which would be of interest to anyone going through the hells of cancer.

Part Five, “Do I Always Have to Have a Positive Attitude? talks about “the effects of the mind on the cancer process itself” and the literature to substantiate these claims. Part Six, “What Can I Do to Help Myself? encourages you to regain control in your life and to remind you that you are not alone in how you feel. There is vital information regarding drugs, tests, and procedures. Mind you again, this was written in 2006 and drugs, cancer protocols, etc., change but I think you might still find much of what is written to be highly helpful. The book also includes a list of trustworthy and reputable national organizations; it is a font of knowledge for those with cancer.

Interesting points from the book:

  • Cancer is not a disease, but a process. “That process is shared by over two hundred very different diseases — such as cancer of the breast, cancer of the lung, cancer of the bowel, and so on … most cancers actually have very little in common with each other, apart from sharing the fundamental cancer process.”
  • Cancers are a group of diseases that may require treatment at various stages of development.
  • The importance of receiving treatments such as chemotherapy and radiation on a rigid schedule are discussed due to the loss of efficacy and side effects.
  • The risk benefit analysis — important questions you must ask yourself such as: How much would a particular side effect affect or alter your quality of life?
  • Debunks many of the myths surrounding chemotherapy.

There are many other compelling points from the book but I will spare you further details because I want you to read it. I think this book is a great resource.

On a side note, AARP recently came out with a controversial piece on Melissa Etheridge where she discusses the BRCA mutation and her life since she was diagnosed with cancer almost 10 years ago. If you absolutely must read it, please click here: http://www.aarp.org/health/healthy-living/info-2014/sheryl-crow-melissa-etheridge-beat-cancer.html

Etheridge said: “I have the BRCA2 gene but don’t encourage women to get tested. ” My eyes began to bleed after reading that bit. And not too long after that, the #BRCA on Twitter was set on fire by the BRCA advocates. Why would one encourage women NOT to get tested for something which could possibly kill them? Easy for her to say but grotesquely irresponsible. She has gobs of money and a bevy of stellar doctors. She can pay for extraordinary care, regardless.

We know that having particular genetic information can be highly empowering for most people and that knowing whether or not you hold a crappy gene mutation can certainly affect your level of care. What truly irks me the most about the piece, yes, there is more but not worth mentioning, is that many of us would not be eligible to receive our annual screenings and tests without that little piece of paper stating we hold a deleterious gene mutation and that is why we — you know, women without the celebrity, and mountains of moolah — need genetic testing. Does she not know this?

Winter has officially arrived in Chicago. Baby, it’s cold outside. 

Be well,

xogox

Family Medical History

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Since the holidays are approaching and many of you will be spending this precious time with your family members, I thought now would be a good time to discuss collecting your family medical history.

A family medical history is a record of health information about a you and your family. It includes information from three generations of relatives, including children, brothers and sisters, parents, aunts and uncles, nieces and nephews, grandparents, and cousins. If you have any information about great-grandparents then jot that down, too.

Families share many factors in common — genes, environment, and lifestyle which in turn may can give clues to medical issues that may run in a family. By noticing patterns of medical issues among relatives, your doctor or genetic counselor can determine whether an individual, other family members, or future generations may be at an increased risk of developing a particular condition.

A family medical history can identify people with a higher-than-usual chance of having common disorders, such as heart disease, high blood pressure, stroke, hereditary cancers, and diabetes. These complex disorders are influenced by a combination of genetic factors, environmental conditions, and lifestyle choices. Acquiring this information helps you to take steps to reduce your risk. If you are at increased risk for certain cancers, especially for those related to Lynch syndrome, your healthcare professionals may recommend genetic counseling and genetic testing. If you do hold one of the five mutations for Lynch syndrome or other hereditary cancers, more frequent screenings will start at an earlier age. Please note, even if you have a strong family history of cancer, lifestyle changes such as adopting a mostly plant-based diet, regular exercise, and not smoking help many people lower their chances of developing many diseases and illnesses.

A family gathering is an optimal time to discuss these issues — most people are together with their families and there are usually multiple generations present. If you’re lacking information within your family tree, documents such as obituaries and death certificates can help you fill in the gaps. It is important to keep this information up-to-date and to share it with your other family members and healthcare professional regularly.

Even if you know you have Lynch syndrome your family medical history information may be very helpful to you, your children, your grandchildren, and to the doctors caring for you. You may also gain insight into other medical issues which may affect your family.

The National Society of Genetic Counselors has a great resource for us to help with this process; please click on the following links:

http://nsgc.org/p/cm/ld/fid=143 

http://nsgc.org/p/cm/ld/fid=52

If you find these resources too difficult to use, try this other template:

http://www.docstoc.com/docs/135934622/Medical-History-Form—Emergency-Medical-Locatorsxls

In the meantime, I have been scouring the Internet for some tasty vegan recipes for the holidays and thought I would share some which I came across:

http://www.foodandwine.com/slideshows/vegan-christmas-recipes/1

http://www.nytimes.com/projects/well/vegetarian-recipes/#home   FYI: they put this out every year, the recipes are simple and amazing!

Vegan holiday recipes on Pinterest: http://goo.gl/L6GPkK.

Hope you’re all doing well — eating loads of plants, exercising and nourishing your inner child.

Happy Halloween to all of yous!

Go easy on the candy this weekend.

xogox

Knowledge is Not Always Power

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I was participating in a conversation on a Lynch syndrome platform on a social media site, not too long ago where a woman with children had recently been diagnosed with Lynch syndrome. She was questioning a group of people, basically strangers who share her genetic nemesis, about whether or not she should have another child because of her Lynch syndrome + status. For those of you new to this blog, Lynch syndrome is an autosomal dominant mutation.

What I particularly love (not really, not so much) are the assumptions that most people make about others, especially when they do not know crucial factors, which are necessary to make thoughtful, educated comments in regards to Lynch syndrome; specifically, things such as education level, socioeconomic status, cultural and religious background, and other important factors which may contribute to one’s person and situation. I am terribly afraid that we all do not (unfortunately) share similar resources. Furthermore, many people simply assume that others share their religious convictions – I’m all about supporting things which “get you through the day” be it a strong belief in a Supreme Being or putting on lipstick (pucker up and apply!) before prophylactic surgery so that you may channel your inner feminine goddess, but please do not assume we all share your belief system.

I detest clichés, especially when it comes to genetic mutations and I want people, especially those within the Lynch community to know that knowledge is NOT power for everyone; Lynch syndrome CAN be a death sentence for some even when they know they hold the mutation and have been vigilant with their screenings. Things are not so black and white in the world of Lynch syndrome; there are various shades of grey we must consider. There are people who have been vigilant and have been religiously screened and still, for some reason unbeknownst to many of us, are dying of cancers related to Lynch syndrome.

Lynch syndrome is a difficult diagnosis to reconcile, especially when young children are involved. At the risk of sounding controversial and provocative, some of the conversations on various Lynch syndrome platforms are not based on logical thought but rather on emotions. I have a problem with this for two reasons. For one, there is enough misery in the world and if we have the power stop it (in this case, knowledge of a Lynch syndrome mutation can be empowering) because we may assume some control over perpetuating these familial cancers, then we should. My apologies in advance if you do not agree with this. If you can afford it, then I highly recommend you explore preimplantation genetic diagnosis (PGD) — a costly procedure used prior to implantation to help identify genetic issues within embryos created through in vitro fertilization to prevent certain diseases or disorders from being passed on to the child. For more information regarding this procedure, please go to: http://www.reproductivefacts.org/topics/detail.aspx?id=1674

Then, there is always adoption, although some may argue there is also a high level of uncertainty involved there, too. Regardless, in my humble opinion — if you have a deleterious gene mutation it should give you tremendous pause about your life, and that of those you are considering of bringing into this world. And do yourself and your future children a favor — do not base major life decisions on potential, future scientific advances.

Second, some people are highly inconsistent in their thought processes. They complain about how horrible their cancer is, or was, and in many cases, how it has ruined or has been a source of immeasurable grief in their lives, and go on to to tell us how their greatest source of misery is knowing the may have unknowingly passed this mutation onto their children. Yet, these horribly awful and negative situations do not give them pause, especially when it comes to advising others about reproduction under the pretense of having a deleterious gene mutation.

Third, then there is the issue of those who are not white with middle-to-upper class financial resources – where are those with Lynch syndrome who are marginalized? How many African-Americans and Latin and Hispanic-American people do we actually communicate with on these Lynch platforms? Not too many. Why? Because many of them are less likely to seek genetic counseling, genetic testing, and have access to medical specialists such as oncologists – they are less likely to know they have genetic mutations because they simply do not have access to these resources which may potentially save their lives. We need to change this and tailor advocacy efforts to specific groups. Please read: http://www.ihavelynchsyndrome.com/book-review-waiting-cancer-come/#.VEkwmku52GI for more on this topic.

There are a few other points which must be shared — one woman recently told me she did not want her daughter to read my site because she was afraid it would prevent her from having the recommended prophylactic hysterectomy and oophorectomy because of my negative experience with surgical menopause at 40. Please note, it is not my intention to discourage others from undergoing these procedures; I just want people to be aware of the implications of such things (like removing ovaries) and to recognize the further away from menopause you are when you undergo such surgeries, the more difficult it may be for you to adjust. My doctors minimized what would happen to me; I know my words resonate with many, many people because of the emails I receive. Many are grateful for my ability to articulate what they feel; but mostly, they are happy to know that they are not alone in the Lynch labyrinth and that others share their darkest thoughts.

I read something recently which really disturbed me because it is a testament to the fact that some with Lynch do not understand the laws of inheritance in regards to this particular mutation. Dominant inheritance means an abnormal gene from one parent can cause disease, even though the matching gene from the other parent is normal. The abnormal gene dominates. Each child’s risk is independent of whether their sibling has the disorder or not. For example, if the first child has the disorder, the next child has the same 50% risk of inheriting the disorder. Children who do not inherit the abnormal gene will not develop or pass on the disease. In other words for those of us with Lynch, EACH ONE of our children has a 50/50 chance of inheriting the mutation; it is incorrect to believe that only “half” of your children are at risk of inheriting this mutation.

Hope you’re all doing well and enjoying the beautiful fall. Be sure you’re eating all the nourishing, amazing foods available this time of year. More later.

xogox

Empower Yourself: Updates on Lynch Syndrome, FAP and Familial Colon Cancer — University of Michigan Conference

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In Michigan this past weekend — of course I managed to find a scarecrow amongst the Halloween decor in downton Plymouth wearing a genetic testing labcoat….

Empower yourself…

Well, I’m back from a much-needed break from the blog. September is traditionally a difficult month me due to the number of death anniversaries in it so I thought it would probably be best to keep my darkness to myself after my last post. Yes — I , too, get depressed and occupy some pretty dark places at times. But my little break from the blog allowed me to do some other things and read — this time away gave me tremendous positive perspective about my life and living with Lynch.

Last weekend I attended the Empower Yourself Conference at The University of Michigan and had an opportunity to speak to the many of the Lynch and FAP patients who attended. Lisa Sylvest, RN, who also has Lynch syndrome, organized the event and did a stellar job! I’ve been to quite a few of these things but this one by far was the best one. The University of Michigan has a fantastic team of doctors who are highly knowledgeable about Lynch syndrome and FAP. I had the distinct pleasure of meeting the Director of the GI Colon Cancer Genetics Program, Elena Stoffel, MD, MPH. If you live in Michigan and need to doctors who know all about Lynch syndrome or FAP, please go to http://www.med.umich.edu for more information.

Lisa actually emailed me yesterday and asked that I share a great article with you:

Adopting Several Healthy Behaviors Cuts Bowel Risk: 

http://www.scienceworldreport.com/articles/17893/20141010/adopting-several-healthy-behavior-cuts-the-risk-of-bowel-cancer.htm.

I loved the intimacy of the conference and the panel of doctors who took the time to talk and answer questions. The food was also pretty damn good – it was healthy and a lot of it was vegan! I had the privilege of meeting many amazing, kind souls, mostly patients who are seeking information on what is required for Lynch syndrome and FAP screening.

Major points from the meeting; genetic counseling is imperative for those undergoing genetic testing; meticulous screening measures are highly helpful in preventing/detecting cancer early and prevention is definitely key; a healthy lifestyle, sans smoking, full of nutritious foods coupled with exercise is an absolute must. The biggest problem in the medical community is that GP’s and gastros are still not up to speed regarding Lynch syndrome screening – Lynch syndrome is solely not about colon cancer as we are at risk for a dozen of cancers and must have annual screening for these various cancers. 

There are a few other things I wanted to share with you. On Facebook I have discovered the most adorable and positive Buddhist cartoons. One is called Buddha Doodles https://www.facebook.com/BuddhaDoodles and the other is called Dharma Comics: https://www.facebook.com/BuddhaDoodles. You don’t need to be a Buddhist to appreciate these bits. I love the simplicity of the drawings along with the positive, endearing messages.

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10580671_701759259905024_4541701701965901565_oOne more thing, it’s time every one of yous all start eating more plants and less creatures with faces. So in order to inspire and encourage you, I urge you to check out Thug Kitchen (http://www.thugkitchen.com) — a site I blogged about awhile back. The two vegans who created the site have come out with an amazing vegan cookbook, chock-full of simple, of what look like to be yummy vegan recipes, infused with profanity. It’s progressive, funny, and entertaining and not for those who are easily appalled. I just received my book yesterday and will try out the recipes; I’ll be sure to pimp out the ones I like the best on the blog.

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Hope you’re all well, nourishing yourselves and keeping positive. I’ll be back to blogging twice a week, next week.

xogox

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