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Georgia Hurst is a patient advocate for those with Lynch syndrome. She is the founder and the executive director of the nonprofit: ihavelynchsyndrome.com. She frequently writes about the many aspects of having Lynch syndrome, and writes for various websites and journals in order to create awareness amongst the global medical community about this hereditary cancer syndrome.
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Are You Thinking About Removing Reproductive Organs to Prevent Cancer?

As a patient advocate for those with hereditary cancer syndromes, I receive countless calls every week from women asking me about prophylactic procedures.
PUBLISHED: NOVEMBER 24, 2015
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
As a patient advocate for those with hereditary cancer syndromes, I receive countless calls every week from women asking me: “Should I have the recommended prophylactic hysterectomy and bilateral oophorectomy?”

We with hereditary cancer syndromes who are at higher risk of developing uterine and/or ovarian cancer are truly caught between a rock and hard place.

Depending upon which mutation you hold, percentages for the development of cancer within particular organs vary. The greatest issue is that current screening for ovarian cancer is poor but removing your healthy ovaries may hold implications for your quality of life; these implications are dependent upon various factors, but mostly age. Those who have not undergone menopause naturally will most likely not transition very well and will require hormone replacement therapy — if they are able to take it. Hormone replacement therapy may need to be tweaked over a period of time and it may take years to get the right amount. You are a unique individual so the one-size-fits-all approach is not appropriate in this realm.

So what does one do? Honestly, there is not an easy answer. You must do what is right for you. No one can tell you what to do, but I highly recommend that you speak to a certified genetic counselor to truly get to the bottom of your risk and to discuss your family medical history. You may find one at the National Society of Genetic Counselors. If you cannot meet with one in person, you may speak to one on the phone.

Read all that you can from reputable sources and stay away from social media platforms where people minimize the loss of body parts. Read books to get a variety of women's experiences regarding this subject matter. Do you own research and ask your doctors lots and lots of questions. I believe your decision will come down to how much uncertainty you can or cannot tolerate.

Angelina Jolie was interviewed for November’s Vogue issue and discussed the aftermath of her prophylactic surgeries.

From the story:


“It really connected me to other women,” she says of her decision to go public. “I wish my mom had been able to make those choices.” The procedures themselves were, she says, “brutal. It’s hard. They are not easy surgeries. The ovaries are an easy surgery, but the hormone changes”—she laughs, nods her head—“interesting. We did joke that I had my Monday edit. Tuesday surgery. Wednesday go into menopause. Thursday come back to edit, a little funky with my steps.”


Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
 
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