Dear Dr. __________:
Three and a half years ago I came to you and told you I had been diagnosed with Lynch syndrome; a syndrome of autosomal dominant inheritance which predisposes one to one or more of a dozen of early onset cancers, specifically of the colon, ovaries, and endometrium. After my visit with my genetic counselor and our discussion, we agreed that the best thing for me to do, in order to improve my chances of survival, would be for me to undergo the prophylactic hysterectomy and oophorectomy. You assured me that surgery would be without complications and that I would just need a small dose of estrogen to deal with the menopausal symptoms. You completely minimized what would become of me.
I was a strong, healthy, happy, vibrant, young 40-year old who was in graduate school, who loved running, and was in the prime shape of my life. Post surgery, I became very sick. I suffered from migraines, lethargy, vomiting, nausea, and severe depression. I came to you several times, begging you to do something to help ameliorate these symptoms; but you and your colleagues wanted me to believe that it was just all in my head. You tried tweaking the estrogen dosage a bit for about a year. It didn’t help.
I will never forget the day you shook your head at me and said, “I don’t understand why you’re having these issues, no one else seems to have such difficulty with this!” Well, I’m afraid I am a unique human being, as we all are, and your “one size fits all” approach to medicine is inappropriate and insulting. After conducting my own research about hormones, I begged you to consider adding progesterone and testosterone to my HRT. I was deeply saddened by your lack of concern and support for my new found health issues as I had spent nearly a decade under you care; you cared for me whilst I was pregnant, you delivered my son, and you had provided me with exceptional care for many years — I thought we had a great rapport — but my pleas for help fell upon your deaf ears. You refused to help me and with that, I decided it was time to find a doctor who would actually listen to me.
I tried everything to help myself feel better. I ate well, tried to exercise, saw an acupuncturist, a therapist, a psychologist, a psychiatrist, and practiced meditation; but deep down I knew the majority of my issues were biochemical due to the loss of my ovaries. I wanted to peel my skin off. I felt that I was not longer suited for the body I had been left with and felt defeminized. I no longer felt like a woman but more like an “it”; I wanted out — I wanted to die because I could not fathom spending the rest of my life in this discombobulated, sickly state. I had prevented potential malignancy to my reproductive organs but at a huge cost for which I was unprepared.
I sought out various doctors until I found one — an integrative medical specialist — who was willing to try anything to help me feel better. I told him I was interested in incorporating testosterone and progesterone into my HRT. Progesterone is not solely essential for pregnancy as many doctors believe. Progesterone stimulates bone growth and is a natural diuretic and antidepressant; it also neutralizes the release of the stress hormone known as cortisol. Testosterone is important for a woman’s libido, maintains muscle mass, and energy. I knew that there could be implications for taking HRT but much of the research conducted in this area has been on postmenopausal women; not premenopausal ones. I became more interested in the quality of my life rather than the quantity of it. I just wanted to feel better and was willing to do anything to get there. After a few weeks of adding testosterone and progesterone to my HRT, I began to feel much better. My mood improved; most of my depression was lifted; I slept better; my libido began to return; my lethargy lessened, and many of the other menopausal symptoms I suffered from gradually disappeared.
I am 3.5 years out from my surgery and I am still not the same person. The surgery has impacted me in a plethora of ways: emotionally, psychologically, and physically. My personality has changed; I am more introverted and prefer to spend time alone. I still feel defeminized and have compensated for this by growing my hair longer, wearing more makeup, and wearing clothing which accentuates my curves. I do not have the energy I once had and must nap most days. With the passage of time and with the help of additional HRT, there have been significant improvements to my health. Even though I no longer have my ovaries, I must have a CA 125 blood every six months for ovarian cancer screening test due to microscopic tissue which may have been left behind as a result of the surgery — a major detail which you failed to mention before the surgery. A CA 125 test measures the amount of the protein CA 125 (cancer antigen 125) in your blood. More often than not, the elevated levels usually present themselves when ovarian cancer is in its advanced stages. I have reconciled my diagnosis and my new body. I have accepted my genetics and am vigilant with my health and annual screenings for the various cancers which have the potential to kill me.
What I want you to take away from this piece is that every one is unique and will respond to medical procedures differently. Removing a patient’s body parts, especially bits like elusive ovaries may hold tremendous implications and complications. Along with forced surgical menopause, women with Lynch syndrome are dealing with a plethora of other issues and are faced with anxiety, fear, uncertainty, and possibly dealing with other family members who are sick or have died from Lynch syndrome related cancers; more importantly, they more often than not have to fret over their children holding this horrific genetic mutation. Sometimes a patient’s issues are beyond your realm of help or comprehension. Just because you may not understand the issues a patient presents doesn’t mean they doesn’t exist. Please do not dismiss a patient’s emotions or symptoms and tell them that it’s all in their head. Listen to them. If you cannot seem to help them, seek out professionals who can and will. Lynch patients have enough to deal without you minimizing their feelings and physical issues.
If you are a doctor and are reading this, please note that there are 600K – 1 million people in the United States with Lynch syndrome and yet only 5% know it. Early onset cancers within a family, specifically of the colon, endometrium, and ovaries should concern you. But Lynch doesn’t stop there; there are implications for many other organs and body parts: the stomach, the hepatobiliary tract, urinary tract, small bowel, breasts, prostate, the brain, and more.
Please go to: http://www.cancer.net/cancer-types/lynch-syndrome for more information.
December 4th is my brother Jimmy’s birthday. He would have been 56 years old; he lost his life to colon cancer due to Lynch syndrome.