I went into shock once I discovered I had Lynch and felt like a walking time bomb. Following my genetic test results in 2011, I underwent a colonoscopy, endoscopy, and kidney ultrasound, and luckily there was no sign of cancer. Usually in women with Lynch, cancer tends to strike the reproductive organs first, then the colon. After reading the literature and talking to the genetic counselors and doctors, it was highly recommended I consider a hysterectomy. I spoke with my gynecologist about the implications of my diagnosis and we discussed the hysterectomy and oophorectomy and which form of hormone replacement therapy I would begin in order to keep the fetching menopausal symptoms away – nausea, headaches, hot flashes, etc. He assured me that having a hysterectomy was not a big deal and completely minimized what would happen to me and what was to come. So, in order to prevent malignancy to my reproductive organs I made the choice to have a hysterectomy and a bilateral salipingo-oophorectomy, otherwise known as a radical hysterectomy. I was finished with having children and knew how difficult it is to detect cancer of the reproductive organs, especially of the ovaries – I wanted to increase my chances of being here for my son. If it were not for him I probably would have opted out of the surgery, or took my chances and waited until I went through menopause.
While ovaries are paramount for reproduction, science has yet to discover what other purposes they serve and how their removal impacts the body. I was ten years away from menopause and had no idea how precious my ovaries were until they were removed. The younger you are when you have a hysterectomy, the more difficult it is for the body to adjust. Not to minimize that effects of menopause in older woman but for them, menopause is a gradual process. Removing perfectly healthy ovaries from a forty-year-old is an entirely different story – you are immediately thrown into menopause – there is no gradual process of adjustment to rapidly decreasing levels of hormones and therefore you go into what I like to call menopausal shock.
Immediately following the surgery, the doctor prescribed a small dose of estrogen and an antidepressant, knowing that my plummeting estrogen levels would throw me into early menopause and possibly causing me to sink into severe depression. The prescribed estrogen had to be tweaked over years because I suffered from hot flashes, nausea, headaches, depression, and lethargy. Tweaked is an understatement. I could not believe how sick I became from this and paradoxically I did not have cancer – I simply wanted to peel my skin off. I wanted my ovaries back.
A month after my surgery I decided to go to the Mayo Clinic to see a gastroenterologist oncologist because there was great difficulty in finding a Lynch specialist in Chicago. The specialist at Mayo reassured me that the I made the right decision regarding the hysterectomy and told me she would aggressively address my health issue. She recommended that I receive annual colonoscopies and endoscopies, along with a CA-125 blood test (even though I do not have my ovaries, I am still at risk for peritoneal cancer), other blood tests, and CT scans for early cancer detection. While genetics certainly plays a role in one’s health, she shared Gould’s view on statistics and assured me that there is a constellation of factors involved in developing cancer. I agree with her: diet, exercise, social support, positive attitude, toxins, and spirituality all play a significant role in whether or not you will develop cancer.
Regardless of this positive information I was receiving, emotionally I was a mess and in hormonal hell. I did not and still do not feel like my previous self. I would sleep all the time, would never shower, and avoided people like the plague. I was concerned for my brother and his situation and was dealing with all these physical manifestations of the hysterectomy and emotional aspects of having Lynch. My husband works from home so it was easy for me to continue on my downward spiral into depression because he was there to pick up the slack with our son, the house, and put up with me sans ovaries. I do not know how I would have survived without his endless love, patience, and support especially since very few people in my life understood what I was going through. Isolation only fueled my depression. My personality changed and I became less tolerant of other people’s problems and thankfully discovered my true friends. Even still, I was lonely as no one really understood the plethora of emotions I was dealing with and the stress it caused me knowing I may have passed this on to my son. My greatest fear of dying and leaving my child motherless could possibly come to fruition. Sooner rather than later.
Several months passed and I could see what my depression was doing to my family, especially to my son. I reached out to another woman in Chicago who has also suffered tremendously from Lynch and found her to be a great source of support. She had undergone the same procedure, and then some, to say the least, and gave me some perspective on our situation. She encouraged me to find other professionals to help my situation and to provide me with emotional and physical support. Eventually I found a stellar psychotherapist, psychiatrist, an acupuncturist and spent many Sunday mornings meditating at my local Buddhist temple. I needed non-verbal companionship so I adopted a dog. It took lots of therapy, meds, needles, support from my family, friends, Buddhist philosophy, meditation, and my dog to help me process and deal with all of my new challenges.