Living Life in a Gray Zone

Most physicians do not realize what Cowden Syndrome is. The physicians who understand Cowden's Disease as a name do not fully realize the mechanism of its actions. My advice is to tell your physician the name of the condition is Multiple Hamaratoma Syndrome rather than Cowden's Syndrome. Most physicians can infer from Multiple Hamaratoma Syndrome the problem is forming Hamaratoma type tumors. Referring to the condition in this way lessens strange looks from physicians who have never heard of this genetic problem.

Understand that a diagnosis of Cowden's Disease does not mean the person will have cancer. There will likely be medical problems but some people have no real issues-it is the reason the condition is under-diagnosed.

Having a name for a condition that dramatically affects your risk of cancer can empower you. Many people live their lives without adequate medical care. Those who have Cowden Syndrome usually do have regular screening and when cancer is caught it is usually early. Because of my Cowden's Disease diagnosis, I elected for a mastectomy that allowed for a breast cancer diagnosis before it became invasive.

Do not look backward on family members who have lost their battles to cancer. Keep your appointments, keep informed of advances, and understand Cowden's Disease and cancer can only take so much until you allow it to take more. I spent many years needlessly worrying my dysgerminoma would come back. There has been no sign of it since 1992. Live your life-don't let the condition have your soul. Cowden Syndrome is a part of you-not the one identifying factor.

Everyday people will not understand what Cowden's Disease is. Forgive them if you receive a look similar to "are you from Mars?" when you try to explain. Cowden Syndrome is extremely rare (approximately 1 in 250,000 people are diagnosed with the condition).

If you are a parent who has a child with Cowden's Disease, above all else do everything possible for the child to live a normal life. It is good for your children to know you worry but don't let the worry stop them from endeavors. My son wanted to play sports and I initially panicked and said no because he also has the condition. Ultimately my husband and I allowed him to play while he is physically able because playing sports is a typical part of the life of a seven-year-old boy. Those who have Cowden Syndrome often have abnormalities other than cancer. When something unusual is found, don't panic and assume the worst. My daughter has a brain lesion we believe to be benign but are uncertain. A diagnosis of Cowden's Disease often means living in a gray area because of uncertainty over cancer. Rather than detesting the fact that we live in a gray area in regard to health, revel in knowing we can enjoy life more clearly because we are