As a patient advocate for those with hereditary cancer syndromes, I receive countless calls every week from women asking me about prophylactic procedures.
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.”
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.”
My surgery was over four years ago (at age 40) and frankly, I don’t like living sans
my reproductive organs. I was perfectly healthy and highly active prior to surgery. I may have prevented cancer to my uterus and ovaries, but it was done at a considerable cost. Even though I am currently on HRT, I have developed osteoporosis in my lower spine and have lost some height, I have developed hypothyroidism, my hair has thinned out, I am more lethargic, my skin is constantly dry, my libido has disappeared, I have to work harder to maintain my weight. I have increased my chances of developing cardiovascular issues and Parkinson’s disease — and I am not the same woman I was prior to the surgery. My personality has changed and I have gone from being an extrovert to an introvert. These issues are not unique to me, these are common issues found in those who undergo prophylactic bilateral oophorectomy
. Ovaries and the magnificent little elusive hormones they create are necessary for more than just reproductive purposes, they affect a variety of body parts and systems — they are instrumental to a woman’s person and overall well-being.
The biggest challenge that plagues me the most is the loss of my short-term memory. I have spent a lot of time and effort trying to cultivate my mind throughout my life and I am afraid that due to the loss of estrogen, my short-term memory now fails me constantly.
Alternatively, I have significantly reduced my chances of developing cancer in the reproductive organs. I do not have to wait for cancer to come to my ovaries and uterus. I no longer worry about developing cancer in those parts, nor do I have to deal with more surgeries, chemo, radiation and the plethora of potential effects from those treatments. I have been able to take preemptive strikes to fight gynecological cancers.
Genetic counselors, doctors, other medical experts and advocates for those with hereditary cancer syndromes need to be aware and more sensitive to the issues I've outlined.
Gratitude to Amy Byer Shainman (@BRCAresponder
on Twitter) and Ellen Matloff (@MyGeneCounsel
) for their comments on this work.
Founder and Executive Director of the nonprofit: ihavelynchsyndrome.com