I returned from Mayo about 10 days ago and my ‘scanxiety' has been finally ameliorated.
Georgia Hurst is a patient advocate for those with Lynch syndrome. She has the MLH1 mutation and fortunately has never had any cancer. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter, and her advocacy work has afforded her opportunities to write for medical journals, various websites and genetic testing companies, as well as collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. Her loves include: her son, her dog, books, photography, long walks in the woods, and seeking out fungi after the rain. Her motto is: "There is enough misery in the world – there’s no need to contribute to it.”
I returned from Mayo Clinic about two weeks ago and my 'scanxiety' has been finally ameliorated. All my scopes were clear — not even one little polyp was found in my colon. What I found interesting, especially since I live in Chicago and I do not take vitamin D supplements, is that my vitamin D level is three times higher than what is considered within normal range. Vitamin D is absolutely essential for normal people, but especially for those who have a hereditary predisposition to colon cancer. Many of those who are at risk of developing colon cancer have been found to also possess low vitamin D levels — just one of the constellation of factors which may contribute to the development of colon cancer. The best source of vitamin D is the sun, but you may get it by taking supplements and eating certain foods, such as fish, eggs, grains and fortified dairy and non-dairy milks.
The most interesting part of my trip at Mayo was when I went to the Women’s Health Clinic and had my hormone levels tested. I have been on various forms of hormone therapy for the past four years and ever since I have been battling lethargy and a few other charming health issues as a result of my hysterectomy and oophorectomy. The doctor at Mayo discovered that even though I am currently on estrogen and other hormones, my estrogen levels are way below the normal range. For a woman of my age in my situation, the appropriate hormone levels would be between 80 -120 pg/ml (picograms/milliliter) – mine was at 13 pg/ml
"Signs and symptoms of low estrogen can vary from woman to woman and may depend on how low the estrogen level goes. Some of the signs and symptoms that you may be suffering from low estrogen include sleep disturbances that can lead to extreme daytime fatigue, inability to focus on tasks, and a sense that you just "don't feel right". These sleep disturbances may result from a combination of heart palpitations, hot flashes, night sweats, and cold chills. You may notice that you are gaining weight -- particularly water weight -- while your eyes, skin and vagina are becoming dryer. You may begin to develop joint pain and headaches. You may be more prone to broken bones as the calcium is pulled out of your bones and your bones become more brittle. Your sex drive may lower as your estrogen level drops. You may begin to develop more vaginal and bladder infections. Any combination of these signs and symptoms of low estrogen can lead to severe depression." Source: http://www.md-health.com/Low-Estrogen.html
My issues manifested in the form of obscene fatigue, not feeling well, some water retention and depression. It has been recommended I change my current hormone replacement therapy and significantly increase my estrogen levels. I will let you know how it goes — in the meantime, I think this is simply a testament to the fact that you must become your own greatest advocate and not take no for an answer. Removing body parts is a big deal and removing bits like ovaries holds implications for other body systems. What bothers me the most is that it seems some physicians are still underestimating the purpose of our ovaries. How many women out there are simply suffering in silence because their doctors told them that they’re fine, the hormones they’re getting are enough, and everything else is simply in their heads? It frustrates me to no end.
One more thing: Just because you have a predisposition to developing cancer, like Lynch syndrome, BRCA
or the plethora of other deleterious gene mutations, does not mean that you cannot assume some responsibility over your health. Please note, that just because you may have something such as Lynch syndrome does not guarantee you will develop cancer — genetics are complex and our everyday behaviors may influence our gene expression. I implore you to take charge of your health
: Stop eating processed foods, increase your plant intake, reduce your meat intake, exercise frequently, lose unnecessary weight, limit your alcohol consumption, do not smoke and try to lessen the stress in your life. Most importantly, get screened annually for the various cancers for which we with hereditary cancer syndromes are predisposed. I truly believe we can assume some control over our genetic expression — it’s not solely in your genes, epigenetics assumes a role, too.
Georgia Hurst, MA