Prophylactic hysterectomy?

I am not sure if this is the right forum, but I am sure someone here will direct me to the proper place. I have history of early-ish breast cancer with no history of bc in my family. In April of 2012 my sister was diagnosed with stage 4 clear cell uterine cancer. As I started looking for info on this, it seems that basically you don't get this unless you've been exposed in-utero to DES. Our mother was a very private woman and we never had an inkling that she might have miscarried prior to our births...until she got ill with Alzheimer's Disease. She started talking about the babies she had lost. At the time (neither my sister or I had been diagnosed with cancer) we kind of thought that maybe she was just confused, but when my sister got sick I discovered the possible connection. My sister passed away 10 months after diagnosis. I recently moved to a new state and saw a new oncologist who picked up the possible connection immediately and asked my why I still had my uterus! I had my ovaries removed with my breast cancer, but at the time, there was no reason to have a hysterectomy. I am seeing a gynecological oncologist in a few weeks, but just wanted to get some feedback from other who may have had a hysterectomy as a prophylactic procedure and what you felt about it. Thanks.

Des????

DES was a synthetic hormone given to women between 1940 and 1971 to help prevent miscarriage. It has been shown to have severe side effects for those who were exposed to it in utero. One of the most serious side effects is clear cell uterine cancer, which is almost non existent in women who were not exposed to the drug. Another side effect is breast cancer.

Thanks x x x

My doctor asked my mom about DES after my surgery as the point of origin for my tumor turned out to be my vagina instead of my uterus. Apparently my rare cancer is also associated with DES. My mom has never had a miscarriage or threat of miscarriage. but can't swear one way or the other what she may have been given by her doctor 50 years ago.

It turned out that had the real diagnosis been made originally then the treatment would have been just radiation, instead of the surgery, chemo, radiation combo I received. The pathology report showed that I had endometriosis and my gyn/onc said that it contributed to the cancer. The pathology report also showed a clear cyst on my right ovary and a "tortured" left Fallopian tube. A few weeks after we learned what the treatment would have been if diagnosed as vaginal instead of endometrial cancer my father asked me how I felt about it all. At first I had been angry because who wants surgery and chemo? Now I feel relieved that I don't have to worry about ovarian or uterine cancer. There is enough to worry about with potential reccurence.

Hi Sweetie,

I know others with possible similar experiences will come along if they see your post. I did a quick search and found this old (2005) thread entitled "DES daughters" you may find :useful https://www.hystersisters.com/vb2/sho...d.php?t=223527. You might also want to try searching on this forum using the term DES and prophylactic hysterectomy although with latter you may find many refs to women with brca 3 genes issue.

It is good you are seeing a gyn/onc and hope s/he will offer some solid insights to this issue. Pls keep us informed and good luck.

Sequana, my Mom was not able to tell us, so we will never know for sure. What I have found out was that DES was never put through the FDA process...maybe back then FDA was not in the picture? Apparently DES was even put in prenatal vitamins as a supplement, so many women were given the drug through that way!

Peggiesue thanks for the links...I will check it out!

We've moved this discussion to our new forum for GYN Genetics discussion - because with the available genetics testing available, we know we have more and more information to make our decisions - regarding our genetics.

Please come back and share with us what you have learned! Your experience will help other women.