Importance Of Reading

            I had been a rather healthy kid till my first menstruation, because they hardly ever stopped and when they stopped, nobody knew why, since medicines did not work or worked just the opposite way….Luckily I had very good mother who, despite constantly busy, taught me to look for information and it was not difficult since Soviet Union was full of good natural sciences books and magazines. So I was able to decide that something was wrong (fibrous disease of both breasts, uterine polyps, ovary cysts, angiolipoma of lover arm, nodulous goiter, brain angiomas as well as retinal dystrophy and stomach polyps found already after diagnosing Cowden’s) and I needed to see geneticist. With some efforts, since in our country they are supposed to deal with women willing to have kids, I managed to discuss situation with such expert. And she told that it looked like a clear case of Cowden's. So I took the opinion and went straight to the University hospital and told gynecologist, that despite what their colleague believed about possibility of serious disease before 50, I insist on examination. Reluctantly they did biopsy and found out that I had endometrial adenocarcinoma. At the age of 33, but grade I - it took me more that year after hysterectomy to find a doctor who agreed to prescribe estrogens.....

            Reproductive organs was followed by both breasts,- it was prophylactic mastectomy, but about maybe several months before bilateral cancer. And again-mess with reconstruction was much worse that the very operation. We here do not have private health insurance, so medical services are covered either by state (less and less services) or by citizen herself. But taking into account that a normal monthly wage is not enough for an appendectomy…. Anyway the state was supposed to cover breast reconstruction, but only for cancer patients. And after all attempts to explain clerks reasons for prophylactic mastectomy, I was ready to deal without reconstruction, luckily surgeon was very enthusiastic….He also found ways to do genetic testing which confirmed Cowden’s.

            So except the neurological problems – brain is inoperable and I have to control epilepsy, depression and panic attacks with medicine, the worst thing is messing with clerks- I have to squeeze out practically everything and it is not good, since it is very difficult to convince my parents and sisters that they should take care about their health.- dad had very recently done tests and promised that he will go to the doctor to check lump in his breast, but my mother and youngest sister believe they have yeast, the same thing that in my case turned out to be cancer….

            Well, at least I joined rare disease society- maybe I shall be of some use to them at least as translator.


Ieva (the same as Eve in English)

IevaZ IevaZ
36-40, F
1 Response Mar 1, 2010

My son has been diagnosed with Cowden's as well. I am being tested for this as well. He is only 42 and has an esphagus covered in precancerous polyps, as well as multitudes in other areas of the digestive tract. He has a form of autism. I am told that persons with the syndrome are also more likely to have larger heads.

I am waiting on results for the test. I am 60. I have had polyps and a goiter and my thyroid removed (by 34) ; a hysterectomy (uterous only) by 32; and innumerous fibrous cysts in the breasts with both breasts involved with precancerous cysts--one still encased and requiring radiation treatment (56). I also have a large head. My esphogus looks like my son's, however is not cancerous. I have had innumerous polyps removed from the digestive tract. I am wondering how unusual this is.