Yesterday, I posted a brief announcement that I remain cancer-free on the three-year anniversary of my total robotic hysterectomy for uterine (endometrial) cancer on December 13, 2013 (a lucky Friday).
I said I would provide the full scoop today, and I have provided more information below. But this will need to be just a quick update as I am still researching the information I obtained from my doctor yesterday—it’s all interesting, and it’s all important.
Lingering Symptoms & Further Testing
Yesterday, my doctor and I discussed my diagnosis in greater detail because of some symptoms involving my bladder and colorectal area that I have had since my surgery and subsequent internal vaginal radiation (brachytherapy). (See Uterine (Endometrial) Cancer – My Story & More and Radiation Therapy for Uterine Cancer – My Story & More for details of my post-surgery progress and follow-up care.)
The problem I am having with my bladder is a prolapse, or cystocele (Medscape). I will discuss this at length in an upcoming post.
The colorectal problems led to a more extensive discussion. I reminded my doctor that my father had colorectal cancer (National Cancer Institute) in his mid-fifties, although he did not die of it. His grandmother, however, did. Just before my hysterectomy three years ago, I had a colonoscopy to be sure I did not have this cancer in addition to my uterine cancer; luckily, I did not. However, my gastroenterologist mentioned that these two cancers—uterine and colorectal—are genetically linked.
Then the talk turned to genetic testing. My doctor said he would forward a request to have my specimen, which is preserved in the lab, retested for signs of colorectal cancer. He also considered sending my tumor for genetic testing, although he was pretty sure my insurance wouldn’t cover it. What he is interested in looking for is Lynch syndrome (Cancer.net), previously called “hereditary nonpolyposis colorectal cancer” (HNPCC).
Lynch syndrome is an inherited condition that creates a higher risk of cancers of the digestive tract, gynecologic tract, and other organs. Those with Lynch syndrome have a significantly increased risk of developing colorectal cancer, endometrial (uterine) cancer, and more cancers and may also be at slightly increased risk of breast and prostate cancer. (I described my 3D mammography last week—all clear.)
This possibility of Lynch syndrome then led to a discussion of my diagnosis. Three years ago, I had “Stage 1B, Grade 3 Adenocarcinoma (Cancer.net) of the Endometrioid Type.” I mistakenly thought this was a Type 1 uterine cancer, the most common type that is estrogen-receptor positive and is often linked with obesity (guilty). But yesterday, my doctor said I had a non-estrogen-positive cancer that was Type 2 (American Cancer Society), a more aggressive type, as indicated by my tumor’s having been Grade 3 (made up of cells that were almost entirely misshapen and abnormal). This was why he ordered additional postoperative treatment in the form of vaginal radiation.
Despite this more severe diagnosis than I had thought, my doctor assured me that the removed organs and all 24 lymph nodes showed no spread beyond the uterus itself, although Stage 1B means that the tumor had penetrated two-thirds into the uterine wall, or myometrium—but not beyond it. Also, he said that most cancer recurrences happen within the first two years after surgery, and the fact that I am at year three means I should continue to be OK. In other words, he said, “The longer you live, the longer you live.”
Considering all this, my doctor referred me to a genetic counselor. I will follow up on genetic testing after the holidays, primarily for the sake of the next generation and beyond, including my son and potential future grandchildren and my niece and her son.
Advice from My Doctor to YOU
Yesterday’s visit with my doctor raised some important issues that require more in-depth research and reporting. For now, I leave you with two points that he stressed and asked that I convey to readers:
(1) Any abnormal vaginal bleeding or discharge in a woman of any age, particularly—but not exclusively—postmenopausal women, should be checked by visual exam, ultrasound, and a biopsy of the uterine lining, or endometrium. No screening test, such as a Pap smear, yet exists to detect uterine or ovarian cancer—a Pap test checks the cervix, the opening to the uterus, only.
(2) Ideally, a woman with excessive bleeding, discharge, or other abnormal symptoms should consult a gynecologic oncologist instead of, or in addition to, her regular gynecologist. You can search for one at the Society for Gynecologic Ongology (SGO).
I will discuss these topics in greater detail soon.
The Patient Path 