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Disclaimer:
Please note that the personal stories in this album describe each individual’s experience with Lynch syndrome or Hereditary Breast and Ovarian Cancer Syndrome and are not meant to offer medical advice. Decisions about medical care should be made taking into consideration the facts, the science, and the patient’s values. The right decision for one patient may not be right for someone else.

Georgia’s Story
I want you to know that I am grateful every single day of my life that I do not have cancer. However, I am writing this to let you know that for some women, having their ovaries removed is not a cakewalk. I was extremely unprepared and felt very alone – I am writing this so you feel neither.

My strong family history of early onset colorectal cancer prompted me to seek out genetic counseling and genetic testing, although I was healthy and cancer-free. At the age of 40, I tested positive for Lynch syndrome, a hereditary cancer syndrome that makes it more likely that I will get colorectal and other cancers, including uterine (endometrial) and ovarian cancer. The words “ovarian cancer” are two of the scariest words for any woman to hear. Screening for ovarian cancer at this time is poor and usually by the time it is discovered, it is too late. Current recommendations for women with Lynch syndrome do not agree on one course of action, and the evidence is limited on which option results in better outcomes. Other women might choose to have more intense and more frequent screenings. I opted for surgery to remove my ovaries and uterus. I was 9 years old when my mother died, and the thought of leaving my 12-year-old son motherless horrified me.
Ovaries are not just for reproduction. The estrogen they create protects the heart and bones, prevents many forms of cancer from developing, and is necessary for high cognitive functioning. Estrogen also impacts skin elasticity, libido, and mood. The removal of my ovaries would have enormous psychological and physical implications for me and would impact how I view myself. The moment I awoke from my surgery, I found myself in the abyss of forced menopausal hell. With the passage of time and decreasing estrogen levels, my situation worsened. Two months following my surgery, I found myself on a downward spiral into a very dark and frightening place. I found myself becoming more introverted, quiet, and disconnected from things, people, and many of my passions. What I struggled with the most was the decline of my maternal instinct: I had to make a concerted effort to continue my role as a mother.

Fortunately, the passage of time, combined with a dedicated doctor, helped improve many of the negative side effects of my hysterectomy and oophorectomy. I was fortunate to find a doctor who understood the importance of using hormone replacement therapy that is specific for each individual. The psychological and psychiatric interventions I received were also helpful. While I do feel better, I will never be the same woman. While researching Lynch syndrome and other hereditary cancer syndromes, I noticed tremendous symmetry between them. Although the mutations may be different, the psychological and some physical aspects of hereditary cancers share more parallels than disparities. After speaking with many other women who have undergone prophylactic oophorectomy, I have discovered that I am not alone. We may have prevented the potential development of ovarian cancer, but at a huge cost. Removing body parts holds implications for the emotional and psychological aspects of one’s being. Still, after reading a great deal about ovarian cancer, I am confident I made the right decision.

Learn more about Lynch syndrome:

Disclaimer: Linking to a non-federal site does not constitute an endorsement by CDC, HHS, or any of its employees of the sponsors or the information and products presented on the site.

http://www.cancer.net/cancer-types/lynch-syndrome
http://www.cdc.gov/Features/LynchSyndrome/
http://www.ghr.nlm.nih.gov/condition/lynch-syndrome

Go here to read the rest:
Living with Hereditary Breast and Ovarian Cancer Syndrome and Lynch Syndrome: Georgia

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