My mother died, now what do I do to decrease my risk?

My mother died almost 5 years ago of stage 1A clear cell ovarian cancer that they found on a hysterectomy. She went through all of the chemo/radiation and had a great prognosis...but it came back twice.
Now I am done having children at 38 and don't know what to do to decrease my risk. I don't think I have a huge risk of ovarian cancer, but I do not want to do nothing. I'm thinking of having my tubes removed (instead of just tied), or possibly having a complete hysterectomy in 10 years - but I'm not sure if that is just too much. We have no other family history of gyn cancer so my doctor says not to worry about it and just be aware of any symptoms or changes. What have others done to decrease their risk?
I still miss my mother terribly and try to keep her spirit of living and love alive for my young children who just barely got to know her.

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I am sorry to hear about the loss of your mother. I am too a Clear Cell and was a stage 1A, but at 4 1/2 years it did come back. No one knows what their future is, but being vigilant in check ups and seeing a gyn/oncologist (which should not be a problem with your family history now). Maybe having your ovaries removed at some point may not be a bad idea, but that would be something to discuss with your physicians. Get check ups, along with mammos.
Always keep your moms spirit alive!! Take Care.

jane

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I would set up a consultation with a gyn/oncologist and try to find one at a university hospital where they might have a high risk program. It may take only one visit but I think will give you the best information on how to proceed. One thing they do say is to use birth control pills to eliminate some risk. If your mom didn't have genetic testing then there is no way to know whether you have the BRCA gene which would predispose to both ovarian and breast cancer. You're smart to be proactive in your approach but I don't think many regular gynecologists appreciate the risk and what is at stake. See the specialist.

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First of all, I recommend getting tested for the BRCA mutation. If it is present I would recommend strongly considering hysterectomy with removal of both ovaries. If it is not present, then you need to discuss with your gyn/onc or/and a geneticist what your overall risk is. Early menopause might be unpleasant, but we all go through it anyway and obviously as you know, the ov. ca is much worse.

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My Onc/gyn/surgeon suggested my daughter get her ovaries removed when she is 10 years younger than the last person in our family to have come down with the disease. So that would be around 50 for her. My sister was 73 and I was 63.

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Stay on top of it. If you can get the ovaries out, do so in my opinion. There was only 1 case of Ovarian cancer in my family, a first cousin. How I wish I had tried to get the Dr. to take mine out, anything but go through this awful disease.

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So sorry about the loss of your Mom. I was told 23 years ago, after extensive pelvic radiation, that I would never have to worry about ovarian cancer....WRONG!! I have regretted not having a hysterectomy....but one was never suggested by any gyn. So given that.....my opinion....complete hysterectomy as soon as you are done having children. After my diagnosis my sister (a genetic match) had it done laparoscopically....one day procedure. I have suggested that to my daugthers also.

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I agree. I had a partial hysterectomy (uterus removed) only at 38 due to extensive bleeding. In hindsight I should have had my ovaries removed, then. When I developed breast cancer in 2004, they weren't recommending brac testing. If they had, I would have found out that I am Brac2 positive and had my ovaries removed then. Women can still get ovarian cancer even without ovaries, but the chances are much reduced. My gynecologist told me for five years before I was diagnosed with oc that my ovaries were so shriveled up that she couldn't find them anymore (normal for post-menopausal women), so I didn't even think about getting ovarian cancer. Wrong. I would get those ovaries out ASAP if you are done having children. Even if you don't carry the gene mutations, you can still get ovarian cancer.

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I would not wait until you are 48. I was 45 at diagnosis of stage 1A clear cell oc, and I've met others who are younger with the same dx. I would say have a laparoscopic total hysterectomy at least by the age of 40. In the meantime, take birth control pills if you don't want to have it done sooner. I had a subtotal hysterectomy at the age of 39 for uterine fibroids, leaving my ovaries alone so I wouldn't have to deal with surgical menopause at such a "young age". Boy do I wish I could have a do-over. In hindsight, I should have had everything removed.

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I'm so sorry you lost your mother, but she must have been proud to know she raised such a smart daughter.

I agree with what everyone has said. I'll also add what we learned at a survivor's course from "the experts" in the context OF BRCA+ patients. It is thought that OvCa starts in the fallopian tubes and migrates to the ovaries, and they recommend the ovaries AND tubes be removed prophylactically. They didn't seem to be so concerned about the uterus or cervix, but if you're done having children, why leave those behind? These are not easy decisions to make, but your loved ones will be happy if you stick around.

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My gyn/onc told me my daughter should have a hysterectomy when she is sure she does not want any more children. Other than that currently she has a CA125 and vaginal ultrasound with her checkups which is another option. Our gyn/onc practice has mahy younger females coming in with OC i.e. as young as 15 with Stage IV and then 20's and 30's. Do not wait 10 years to monitor this

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I am 45 and was dx with stage 4 last year, my grand-mother died at 52 with ovarian cancer. My doctor told both of my girl, when they are done having children remove everything. Remove the risk. My sister was going to have a partial hysterectomy laparoscopically this year, however they had to end up cutting her open. She was full of tumors. They were caught early enough. She was tested last year when I was dx and all was "said" to be normal at that time. But they were wrong, she went to a different doctor this year that took a more powerful approach to our family history. Her doctor told her she was very lucky (I call it blessed) they caught it when they did. She told my sister looked gnarly inside. I said all this to say, Please take care of yourself. Just because you get checked every year, does not remove the danger. My ONC-GYN says when you are done having children your uterus because a black hole for things to grow.

I am so sorry to hear about your Mom, I know it never gets easier. Through my journey I am learning make as many memories at you can. Because in the end, that is all your family will really hold on to and it will make them smile when I am gone. Take care!!!

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My sister died on April 20th. She had carcinoscarcoma of the ovary (very, very agressive). I had surgery June 17th and had both of my ovaries removed. I had already had a hysterectomy years ago. If I don't have those ovaries, I will not get ovarian cancer.

After my sister and reading all your posts, I am sure I will not miss those ovaries at all.

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Thank you all for your kind words and advice. I really appreciate hearing what others have done or wish they had done in the past. I will be seeing a gyn/onc to discuss my options. I was really hesitant to remove my ovaries now, but I am thinking about it more seriously now after all of your posts.

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I am sorry for your loss. My mother also died of ovarian cancer 11 years ago. When I was done having kids, I too wondered what I could do. I talked with my ob/gyn who knew my family history and I also met with a genetic counselor. I decided to have a full hysterectomy. It was done laparoscopically, recovery was quick and pretty easy. I took hormones for about a year. I feel great and have huge peace of mind. It was the right decision for me and my family. Good luck with your decisions. Let me know if you would like more info or details.

Carrie

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Removing your ovaries is certainly not a bad idea, but it is NOT a guarantee that you will not develop OC. They call it Primary Peritonial Cancer, but it is basically identical to ovarian. Hysterectomy almost always leaves tiny bits of tissue behind and all cancer starts out as a single mutant cell. Don't let your guard down just because you have your ovaries removed.

Carlene

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I agree with Hissy Fitz. My ovaries were completely normal but I had Primary Peritoneal Stage IIIB cancer (which is the ovarian cell and considered the same as ovarian cancer) throughout my omentum, on my colon, appendix, spleen and bladder. Be vigilant even after your ovaries are gone. DEMAND a CA-125!

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