It was May 4, 1999 when Dad had his colonoscopy. He had frequent diarrhea, weakness, and some unexplained weight loss over a couple months. After several weeks of taking antibiotics, for what they thought was an intestinal infection, a colonoscopy was suggested. I remember the feeling of my body going numb when the doctor said it was cancer. It had advanced so much that they didn’t wait for pathology results to start his treatment.
Dad died July 31, 1999, 3 months after diagnosis. He was 50 years old; he was so young at heart and we always considered him to be as healthy as a horse. Watching my Dad take his last breath was the most profound thing I’d ever experienced — he and I had a special father/daughter bond. He could be difficult at times but I knew he was always there for me; now he is gone.
I had my first colonoscopy a year later and fortunately no polyps were found and my doctor recommended I revisit him in 10 years. Twelve years later, I very reluctantly scheduled my second colonoscopy. Within the twelve years time and between the two colonoscopies I’d gone through a tremendous amount of stress: I attended nursing school and graduated, started working as an RN, raised my son, got divorced, moved twice, started a new job, and moved in with my boyfriend. There was no time for a colonoscopy – my life was just too busy. Later I discovered it might have been a blessing in disguised.
April 19, 2012 I woke up with my boyfriend sitting next to me when the doctor came in. I remember the doctor saying he removed a couple polyps, one larger than the others so he put a little ink tattoo in the place where he removed the larger polyp. They do this so they can keep an eye on that area he said but I knew better — they tattoo the area so the surgeon can find that part of the colon where the cancerous polyp was removed.
Ironically, I was working on the oncology unit when I received the call from my gastro doc saying it was cancer. The conversation lasted 8 minutes but I only recall the first 30 seconds of it. All I recall thinking is: “I have cancer.”
On May 21, 2012, a small section of my colon was removed and any sign, cell or fleck of cancer, was gone! Pathology came back negative, no chemo or radiation was needed. I was hoping I would just have to deal with a couple months of recovery and thought the cancer would just be a memory; however, the follow up appointment would prove different and that it when it was recommended I seek out genetic counseling.
I’d never heard of Lynch syndrome, or HNPCC, but apparently I met all the criteria. After meeting several times with my genetic counselor and discussing it with my family, I agreed to be tested and allowed them to retrieve my tumor to be tested as well. All I wanted to know was if my cancer was hereditary. A few weeks later, the test came back positive – I have Lynch syndrome.
Since I heard this phrase my life hasn’t been the same. I felt like a walking time bomb. I’ve caught myself saying many times, “It’s only a matter of when the cancer comes back.” I was given a list of different cancers, telling me the percentage of my risk for each cancer since I have Lynch syndrome. Aside from being at high risk for colon cancer, women with Lynch are also at risk for endometrial and ovarian cancers — so it was strongly recommended I have a prophylactic hysterectomy, since screening measures for ovarian cancer are very poor at this time. I’ve also been told if the colon cancer returns, there is a chance my entire colon will need to be removed. Since I’ve already had cancer I was told I’d have yearly colonoscopy, endoscopy, a urine cytology, a mammogram, subsequent biopsies if needed, and blood work every 6 months. I will have several type of doctors following me: a oncologist, gastroenterologist, urologist, oncological gynecologist, oncology surgeon … so rather than take the bull by the horns, hanging on for this wild ride, I occasionally find myself shutting down. I am concerned that my brothers and son may have Lynch syndrome, too, but hopefully with meticulous, annual screening they will live long, healthy lives.
Writing this blog has been a catharsis for me and I hope it resonates with others who might be going through this as well. I find myself stressed out each time I have an appointment with any of my team of doctors. I worry and think, “What will they find now?” and “Where will the cancer be next?” I’ve learned that these are normal feelings and I’m not alone. Reading other blogs has helped me and I hope my blog will help others, too.
Thank you to Angela and to all of my other guest bloggers this past month. It’s been an honor and privilege to have all of you share your incredible stories during Colon Cancer Awareness Month.
By the way, our #Lschat on Lynch Syndrome Awareness Day reached over 10 MILLION people on Twitter. Thank you to all of you who participated and helped make it a tremendous success. Also, here’s a recent piece I recently wrote for Cure which may be of interest to you, especially if you’re interested in Angelina Jolie and her recent announcement about her oophorectomy due to having the BRCA1 mutation:
I will be back to blogging in a week or so. Lots of great news to share — hope you’re all well.