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Living With Lynch Syndrome: Pick Your Hard


Women with hereditary cancer syndromes must make difficult decisions about whether to keep their reproductive parts and risk dying young, or to remove them but potentially open themselves up to health issues. “Pick your hard,” writes one woman.

This year marks a decade since I underwent prophylactic surgeries to reduce my cancer risks to my reproductive organs for Lynch syndrome. I did not understand how influential and impactful estrogen was for my well-being and health until my ovaries were removed. Many fail to recognize that estrogen is necessary to help your body and its parts work in concert with each other seamlessly.

Women with hereditary cancer syndromes must make difficult decisions. Do you keep your reproductive parts and risk dying young and leaving your precious children and spouse behind, or do you want to remove your uterus and ovaries but potentially open yourself up to Pandora's box of health issues? Both are hard choices. Pick your hard.

According to Mayo Clinic, "Ovarian cancer often goes undetected until it has spread within the pelvis and abdomen. At this late stage, ovarian cancer is more difficult to treat." Lack of early diagnosis and the lack of therapies for advanced ovarian cancer kills nearly 15,000 women a year in the U.S. It is one of the most challenging choices women with hereditary cancer syndromes must make – but the consequences of oophorectomy are often minimized by well-meaning medical professionals and rarely discussed.

When I awoke from the surgery, I immediately had this burning desire to rip my skin off – my body felt foreign to me, and I could not shake this feeling for many years. The rapid loss of estrogen has been troubling and problematic on various levels, even though I began hormone replacement therapy (HRT) immediately following surgery. Even still, I began to notice multiple changes in my body, and I have difficulty discerning normal again versus rapid aging.

I genuinely believe I have experienced the latter due to the oophorectomy. Even with HRT, my Greek skin began to look dry and crepey. My hair started to thin and lose its luster, and my joints began to ache. Luckily, I found that collagen supplementation has helped remedy most of these issues.

Aside from the hormonal issues, I found myself dealing with the physical implications of having the hysterectomy and bilateral oophorectomy. Many women will develop pelvic floor issues during pregnancy and birth, but mine worsened after the hysterectomy. The pelvic floor is a band of muscles that spans across the bottom of your abdomen, and it goes from your tailbone to your pubic bone. A hysterectomy may worsen any pelvic floor dysfunction because the space left behind from the surgery will cause the organs surrounding your uterus to migrate into your pelvic bowl. Pelvic floor issues may cause an increased urge to urinate and impede your ability to empty your bowel regularly. Seeking out a physical therapist helped me strengthen my pelvic floor through specific exercises and other forms of physical intervention.

Emotionally, I found myself struggling with anxiety and depression and sought professional help and medical intervention. The cognitive impacts have also become evident. I am the one who easily recalls birth dates, phone numbers and unusual facts with ease, but not so much these days. I find myself more forgetful and walking into rooms only to forget why I am in there. Some may argue this comes with age – perhaps, but I make a concerted effort to try and stay sharp every day. I try to combat the aging process through reading, doing the N.Y. Times Spelling Bee, listening to various genres of music, eating a Mediterranean diet, spending time with others and exercising daily with my dog.

I have spent a lot of time and effort trying to mitigate the effects of my ovaries being removed. Then I came across this five years ago, which only validated my concerns – a Mayo Clinic Study which showed "women under 46 who underwent bilateral oophorectomy experienced a higher incidence of the 18 chronic conditions considered one at a time, except cancer, and an accelerated rate of accumulation of combined conditions, or multimorbidity. Estrogen therapy reduced some of the risks in women who had undergone the procedure. The investigators suggest that the premature loss of estrogen caused by the oophorectomy may affect a series of aging mechanisms at the cellular and tissue level across the whole body leading to diseases in multiple systems and organs. In summary, the effects of oophorectomy in premenopausal women are much broader and more severe than previously documented." The swath of issues resulting from oophorectomy includes depression, hyperlipidemia, cardiac arrhythmias, coronary artery disease, arthritis, asthma, chronic obstructive pulmonary disease, osteoporosis, Parkinsonism, dementia, cognitive impairment, depression, anxiety and accelerated aging. Much of this is supposedly mitigated with the use of HRT.

Regardless, if I had access to this information before making prophylactic surgical decisions, it would have given me pause. I wish I knew then what I know now. While I have significantly reduced my risk of developing ovarian cancer, I probably would have waited as long as possible – or at least until I achieved natural menopause – before undergoing these surgeries. I made the best decision based on the information available then.

Women deserve better options for ovarian cancer prevention; we need better screening options and more funding for ovarian cancer research. We also need medical professionals who do not think ovaries are solely for reproductive purposes and understand the importance of HRT. Ovarian cancer is deadly and difficult to detect, but living without your reproductive parts, specifically your ovaries, can be challenging and may affect the quality of your life, too.

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