As genetic testing is becoming more prevalent and more women are being diagnosed with hereditary cancer syndromes many are trying to assume some control over their genetic destinies. Some women with mutations such as Lynch syndrome or BRCA are undergoing prophylactic surgeries, which are done in order to prevent cancer from developing in specific body parts.
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 genetic testing is becoming more prevalent and more women are being diagnosed with hereditary cancer syndromes, many are trying to assume some control over their genetic destinies. Some women with mutations such as Lynch syndrome or BRCA
are undergoing prophylactic surgeries, which are done in order to prevent cancer from developing in specific body parts.
At the age of 40, I was diagnosed with Lynch syndrome; since I was at high risk for developing endometrial and ovarian cancer my genetic counselor recommended I remove my reproductive organs. In women with Lynch syndrome, cancer prefers to manifest in the reproductive organs first, then in the colon.
My family medical history includes colon and other cancers. My brother died at 36 from colon cancer due to Lynch syndrome — the other had his colon removed at 48. I was diagnosed with Lynch syndrome at 40. Fortunately, I was healthy with no cancer. Losing my mother young and the thought of leaving my son motherless horrified me. Furthermore, screening for ovarian cancer at this time is very poor and it is usually discovered when it’s too late. I wanted to ensure I was exhausting all of my options in order to be here with my son for as long as possible.
My negative experience as a result of removing my reproductive organs was the impetus for my blog: ihavelynchsyndrome
. Many of the points mentioned below are things I wish someone would have told me prior to my surgery.
Read all you can from reputable sources about hysterectomy and oophorectomy and be sure to take notes and write down questions or concerns you may have for your doctor and genetic counselor.
Talk to your gynecologist before your surgery about hormone replacement therapy and whether or not it is an option for you. Ask them about estrogen, testosterone and progesterone.
Be sure a gynecological oncologist performs the surgery as they have more surgical experience than a gynecologist.
You may want to consider talking to a therapist, especially one who specializes in women who have genetic mutations. Many unexpected emotional issues may arise before and after the surgery. You may grieve the loss of your reproductive organs and the lack of ability to have children. You may feel defeminized, or simply just overwhelmed by knowing you have a gene mutation which could be life-threatening.
You may want to think about seeing a psychiatrist. Many women experience immeasurable anxiety before and after their surgery and this is when medical intervention may be extremely helpful. The loss of hormones post surgery may impact your psychological well-being and antidepressants may become very useful during this period of adaptation.
Consider only discussing your surgery and medical issues with a few selective people such as your genetic counselor, doctors, your spouse and close friends. Be prepared for the fact that not everyone will understand your decision to have your reproductive organs removed and may give you inaccurate, unsolicited advice.
Give yourself time to heal — physically and emotionally. There may be a long period of adjustment as your body may not ever be the same. This is dependent on the age of your surgery. A 40-year-old woman will probably have a more difficult period of adjustment than a woman who has already experienced gradual menopause.
Be aware of the fact that removing your ovaries may hold implications for other body parts and systems. Estrogen plays a vital role in a women’s overall well-being and general health. Please discuss this with your doctor.
No one can make the to decision to have this surgery for you; it’s a very private and personal matter and you must do what is right for you and your family.
Take solace in knowing you have significantly reduced your chances of developing cancer of your reproductive organs; as previously mentioned, screening for ovarian cancer is poor at this time.
In the meantime, #Hcchat will hosting another Tweet chat on Twitter on September 9, 2015 at noon (CST) and will discussing: Who Really Get Genetic Testing?
with Dr. Sharlene Hesse-Biber. I hope you can join us.
Please click here
for more info.
Georgia Hurst, MA