Family hx ovarian cancer, surgery vs monitoring

I'm 47 & have a grandmother with breast CA, mother & sister with ovarian CA. I had elevated CA125 (100) initially, normal transvaginal u/s, negative BRAC 1 & 2 & repeat CA125 is normal (26.1). I'm having difficulty in deceiding if I should have the total hyster via vaginal approach or continue with close screening. Any suggestions?

s

Wow! What a dilemma you are in. I have stage IIIC ovca, with a sister and maternal aunt with breast ca. I also tested negative for BRCA 1 and 2.

Have you gotten a 2nd or 3rd opinion? I would suggest if you are not already being seen by one, that you consult with a gyn/onc about your family history.

Let us know.........

Hi Repetr1093:

That is a hard decision to have to make. I don't want to scare you, but please keep in mind that Ovarian Cancer is a very silent, sneaky disease, and does not always present itself in a way that can be easily detected.

Talk to your gynocologist , and see what he recommends,but depending on your age or situation don't rule out surgery. It is not as bad as you may be thinking, and it may give you peace of mind.

Get lots of medical opinions, and go with your instincts. You know your body and thoughts better than anyone else.

My thoughts are with you.

If you came up negative for the BRCA1 & BRCA2 your chances of getting ovarian cancer are about the same as the rest of the population, which is very small.

You should consult a genetic counselor to decide what is the highest risk for you. Hysterectomy and specifically oophorectomy has long-term effects. I'm guessing that you'd go no-HRT with your breast cancer family history, so that would bring a host of other possible conditions to the forefront.

Definitely seek other opinions from doctors well versed in these diseases. Don't forget what your father's side may carry as well. Cardiovascular disease like heart attacks and strokes are the biggest killer of women, so don't ignore the larger threats looming. A whole body approach might serve you best.

It must be terribly stressful living with this and I can understand you wanting to do something about it one way or another. Whatever decision you make, you should have all the information possible.

Take care.

That is not necessarily so that without being brca+ your chances are the same as the rest of the population. I have seen lately many cases that there are 2 or more cases of ovca in a family and that family tests negative for the gene mutation. They say it could be a gene that they have not identified or something else causing the family history. It makes it very difficult then to make choices when you just don't know.

lcac, you're right, it's unknown if the chances are exactly the same because it is not a sure thing that the BRCA1 & 2 are the only genetic markers for ovarian cancer.

However, seeing families with higher incidences of ovarian cancer without the marker can also indicate environmental causes. The so called "cancer clusters." For one, there is a much higher incidence among women exposed to talc.

One article I read said that BRCA1 and/or BRCA2 positive ovarian cancers accounted for as many as 40% of all cases. Being negative is certainly no guarantee, but the chances are definitely lower than if you take a sample of the general population which includes BRCA1 and/or 2 positives.

Oophorectomy raises the risk of other cancers (thyroid, and a recent confirmed link to higher rates of parkinsons) and cardiovascular disease so removing them has a whole body effect that should be carefully considered with the proper medical advice.

Take care.

Hi Juniper, That is very interesting what you said about talc. My mother and I were just talking about that today. My grandmother was dx with ovca at age 74 and now my mom at age 60. My mom was just telling me back then they use to use those round powders with the big round puff and she use to put it in the bikini area all the time and she is pretty sure her mom did the same thing. Also my mom grew up in Long Island until the age of 6 which is also known as the cancer belt so I guess environmental could be logical. But with that said I will find out the results of my moms brca test next week. I'm so nervous because if she does test negative I won't know what to do. I really want to have my ovaries removed even if she's negative because it scares me that both my mom and grandmother got ovca. My mom's doctor thinks it's odd that if it is a genetic thing that we have not seen breast cancer in our family too. The only cancer is the two cases of ovca.

Rpeter1093, I have been where you are, as you will be able to tell from my profile at the end of this post. Having a hyst was one of the hardest decisions I've ever had to make. One of the major deciding factors was that before she died, my mother begged me to have the hyst done. After my mother was diagnosed with ovarian cancer, my gyn expressed grave concern for my health. A year later, when we learned that the so-called cyst on my sister's ovary was actually a pre-cancerous tumor, his concern increased to the point that he said I should seriously consider having LAVH/BSO, particularly since I was also having heavy bleeding, cramping, and clotting each month. After seeing what my mother went through before she died, my husband practically begged me to have the surgery. I waited another year before I finally committed to having the hyst.

Yes, sometimes I worry I might have done the wrong thing, but on other days I remember how quiet and deadly my mother's cancer turned out to be. Her cancer had spread throughout the abdominal cavity, yet it didn't show on any CT scans. Her doctor said it was more like a fungus rather than well-defined tumors and that it was one of the most aggressive cancers he had ever seen.

My mother didn't use talc. We didn't live in a "cancer belt." Her mother, my grandmother, will be 95 next month, and she did not have OvCa, although she DID have her uterus removed around age 60. My mother never had the BRCA testing (and neither have I), so we don't know whether she carried the gene. I very much believe that there are other gene mutations that are unknown to the medical and scientific community at this time.

As far as all these studies about the risk of developing one disease or another if you have a hyst and/or oopherectomy, take them with a grain of salt. Many times these studies are flawed and, as my doctor says, often a flawed study yields a flawed result which ends up being sensationalized by the media. "NEW STUDY SHOWS WOMEN WITH HYSTERECTOMIES HAVE INCREASED RISK OF ________!!!" scream the headlines. It's very hard to educate yourself properly when no medical study is ever truly unbiased, even in the control group that's chosen.

Whew. Sorry; I sometimes get carried away because there is no easy, logical answer. There are risks no matter what you do. You just have to weigh the risks of each choice and decide which path is right for you.