“The most sacred place dwells within our heart, where dreams are born and secrets sleep, a mystical refuge of darkness and light, fear and conquest, adventure and discovery, challenge and transformation. Our heart speaks for our soul every moment while we are alive. Listen… as the whispering beat repeats: be…gin, be…gin, be…gin. It’s really that simple. Just begin… again.” –Royce Addington
Individuals with Lynch syndrome face a high predisposition to contract cancer. Cancer is the uncontrolled growth of abnormal cells. They follow their own form of development apart from the normal development of cell growth, division and death. They may travel to distant locations through the bloodstream or the lymphatic systems (metastases) or they may occur in adjacent cells.
Those with LS face an up to eighty two percent (82%) risk of contracting colon cancer during their lifetimes. If this occurs, treatment often involves prophylactic (preventative) surgeries, including:
Colon Resection: This procedure is ordinarily prescribed for individuals with Lynch syndrome and who have contracted active colon cancer which cannot be removed by colonoscopy. In most cases where the tumors are on the right, subtotal colectomy is favored with preferences of the patient actively elicited. This involves removal of most the colon, leaving a small amount to be reattached to the rectum.
The type of surgery one receives is dependent upon the location of the tumor and the advanced stage of the development of the cancer. There are many types of colectomies which are performed however the most common is the subtotal colectomy.
At first, living with a colectomy seems like an incredible challenge and can be frustrating, especially if one is undergoing chemotherapy shortly following the surgery. I can still hear my wonderful oncologist softly and reassuringly uttering, "Patience...time is your friend. It doesn't seem that way today, but trust me. It will get better."
As usual, the immense amount of wisdom she had, despite her age, was right...and it took about fifteen months for my colon to settle down and get into a routine that allowed me to do almost everything I was able to do before.
Each of us is different and some may not heal as well as others. However, what we need to realize is we DO heal and we do adjust to our life circumstances. There are ways that we can do almost anything we desire, even with an unpredictable colon!
Male Urinary and Reproductive Tract
As well, we may require treatment for many different cancers of the gastric system, the hepatobiliary system and the urinary tract system as well as the prostate, the skin, the brain, and women's cancers.
Female Urinary and Reproductive Tract
Women diagnosed with Lynch syndrome face an extremely high lifetime risk for endometrial (up to 60%) and ovarian (up to 12%) cancers. (According to recent studies this risk may be even higher.)
Unfortunately, the tests currently available for womens cancers are not totally accurate, though nonetheless, are still considered important procedures to undergo annually in hopes cancers will be detected.
Hysterectomy and or/Oopherectomy: This should be discussed as an option after childbearing years to deter the high risk of gynecological cancers. Most commonly, women with Lynch syndrome have the uterus and the ovaries removed as well as the cervix. This is an extremely common surgery conducted in the U.S. today and is believed to reduce the risk of Lynch syndrome induced womens cancers.
According to recent studies, the risk of alleviation from all cancers is not totally certain as there have been a few women who have contracted primary peritoneal cancer, despite having a hysterectomy.
The "peritoneum" is a thin, delicate layer of cells that lines the inside wall of the abdomen and covers the uterus, as well as extends over the bladder. Consisting of epithelial cells, the peritoneum produces a fluid which eases the movement of organs inside the abdomen. Cancer of this lining is known as “primary peritoneal cancer” (PPC) and treatment consists of much the same treatment as stage III ovarian cancer.
Though these cancers are rare, it is important to be alert to the symptoms which include
General abdominal discomfort and pain, such as gas, indigestion, pressure, swelling, bloating or cramps
Nausea, diarrhea, constipation and frequent urination
Loss of appetite
Feeling full even after a light meal
Weight gain or loss with no known reason
Abnormal bleeding from the vagina
Studies relating to recurrence of women's cancers following hysterectomy are ongoing at MD Anderson and being studied carefully. We urge everyone who has Lynch syndrome and who has undergone prophylactic surgery to participate in these studies in order to provide a better quality of life for those in the future.
Just recently, in Australia, teams of researchers are studying as to whether or not a component of Lynch syndrome exists, resulting in breast cancer. These studies have also been conducted in Finland, Spain, Lebanon and other countries. Early results indicate some Lynch syndrome survivors, with special subsets of Lynch syndrome, do contract breast cancer. There is far more research which needs to be completed to determine the specific extent of those cancers. To protect one's self, it is always best to perform regular self examinations and get an annual mammogram.
Those same researchers have discovered several cases of cervical cancer which appear to be Lynch syndrome cancers. This necessitates consideration of surgical removal of the cervix as a prophylactic measure, as well, when considering prophylactic surgery of women's organs.
Of note, sarcomas, thyroid cancer and prostate cancer have been discovered within the Lynch syndrome.