In honor of Ovarian Cancer Month, it is only appropriate for me to discuss ovarian cancer. "Ovarian cancer" are two of the scariest words in any language for a woman to hear — screening for it at this time is poor and more often than not, by the time it is detected it is too late.
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.”
In honor of Ovarian Cancer Month, it is only appropriate for me to discuss ovarian cancer. “Ovarian cancer” are two of the scariest words in any language for a woman to hear, as screening for it at this time is poor and more often than not, by the time it is detected, it is too late.
This is what prompts many of us with hereditary cancer syndromes, such as Lynch syndrome and BRCA mutations, to undergo a radical hysterectomy at an early age and go onto a downward spiral into forced menopausal hell. Honestly, I do not like life without my ovaries – their removal has had a negative impact on my life; however, due to having MLH1, one of the Lynch mutations which puts me at higher risk for developing ovarian cancer, and having a child, I felt as though I was stuck between a rock and hard place. I wanted to decrease my chances of developing cancer to my reproductive organs while increasing my longevity for my son.
Ovaries and those precious biochemicals make up a woman’s person. In order for me to come to terms with my decision, I have had to read about other people’s cancer stories for insight. Reading about ovarian cancer brings things to my attention that I would not have thought of otherwise. The book which provided me with the most perspective is by Susan Gubar, PhD., entitled: Memoir of a Debulked Woman: Enduring Ovarian Cancer.
It is an exceptionally well-written account of how she endured ovarian cancer and the various surgeries and treatments for it. She is “debulked” because the surgery she underwent for advanced ovarian cancer damaged other organs in the process. She undergoes chemotherapy and multiple surgeries and discusses the various difficulties she has to deal with as a result of the chemo and surgeries. Words do not do the emotional and physical toll that this horrific disease has had on her any justice.
According to Gubar: “Ovarian cancer is the leading cause of American women’s death from gynecological cancers, ovarian cancer exhibits warning signs that are easily missed or dismissed…Doctors and nurse practitioners often attribute the muted or misunderstood signs of ovarian cancer to menopause, endometriosis, yeast infections, indigestion, aging with its aches and pains, gallbladder attacks, benign cysts, diverticulitis, irritable bowel syndrome, urinary tract infection, stress, depression, pulled muscles, etc. Misdiagnosis can also result from the unreliability of the CA-125 blood test (standing for cancer antigen 125) often used to measure levels of ovarian cancer. Many women exhibit high levels of this protein without having cancer (a level of 35 is considered normal), and quite a few women with early stage ovarian cancer do not have elevated levels…no reliable screening for ovarian cancer exists.”
To make matters worse, “prophylactic hysterectomy is not an absolute safeguard against ovarian cancer, because ovarian type cancers may manifest themselves in the peritoneal lining; early surgical menopause is responsible for a number of other issues: risk of heart disease, high blood pressure, osteoporosis, cognitive problems, depression, inelastic skin, and weight gain.” Gubar writes: “The most troubling aspect of ovarian cancer is that most people diagnosed with ovarian cancer, whether or not they are using advanced medical methods to contend with their disease, die of ovarian cancer, the process can be isolating as well as devastating.”
The most compelling part of the book is when Gubar states, “Death is not experienced as bad by me simply because in death ‘I’ do not exist and therefore ‘I’ cannot experience death or anything else. True, the death decreed by ovarian cancer deprives me of a longer life, but a longer life under some circumstances may not be better than a shorter life.”
Gubar raises all kinds of interesting philosophical issues and what it means to truly live when one has cancer. “Despite their [doctors’] best efforts, however, each procedure undertaken against the havoc wreaked by cancer —debulking, draining, bagging, poisoning — has produced its own woeful consequences on the psyche and the body. Medical interventions designed to control cancer often backfire, I have learned, and hurt some other aspect of the treatment … Patients are consistently offered decisions or choices with implications they cannot fully comprehend and consequences they rationally dread.“
The bottom line: “there has been little substantial progress in medical approaches to ovarian cancer.”
This book helped me understand ovarian cancer and many of the issues which may present themselves as a result of having it, the surgeries, the chemotherapy and myriad of other challenges, which may follow suit. I greatly appreciate Gubar’s honesty and courage to write about her hellacious ordeal. People may be alive and deemed as survivors, but are not truly living as their quality of life declines due to cancer, surgery and the long-term consequences of chemotherapy.
I am grateful to know that I have Lynch syndrome and was able to take some control over my potential genetic destiny by removing my ovaries. While my quality of life may have changed, I am most certainly still alive and living life to the fullest. You may read more about my experience with Lynch syndrome and my hysterectomy and oophorectomy at: ihavelynchsyndrome.com.
Founder and Executive Director of the nonprofit: ihavelynchsyndrome.com