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1 year post-op, kept ovaries, now BRCA1 mutation?! 1 year post-op, kept ovaries, now BRCA1 mutation?!

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  #1  
Unread 04-17-2014, 12:33 AM
1 year post-op, kept ovaries, now BRCA1 mutation?!

So, I had a hysterectomy in November 2012 because of severe pain related to fibroids, adhesions, and a bunch of other craziness going on in there. I had debated long and hard about keeping my ovaries. My grandmother died of ovarian cancer but that was the only family history as far as I knew. Since I was only 34 I decided to keep my ovaries because I do have a strong family history of osteoporosis and heart disease, both of which are exacerbated by menopause. Then in July, my sister was diagnosed with ovarian cancer at 33. I have now found out I have a BRCA1 mutation and I feel like I'm having to start all over.

Has anyone had a BSO separately from a hysterectomy? It sounds like the recovery might be similar. My hysterectomy did not go as planned (abdominal instead of laparoscopic and more extensive because of unexpected craziness in there) and the recovery was pretty rough. The idea of going through that again makes me want to cry! But the thought of getting ovarian cancer - which is how it's presenting itself in my family - is equally stressful.

I have a medical team that I trust but the diagnosis is still new. My sister is now done with chemo and doing well - they caught the cancer very early during surgery for a painful cyst. But now she, my other sister, my mom, and I are all trying to figure out what to do with the news of the mutation.

Any thoughts? Thank you!!
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  #2  
Unread 04-17-2014, 12:36 AM
Re: 1 year post-op, kept ovaries, now BRCA1 mutation?!

My sister had hers removed at the same time as her mastectomy. It was lap and I think that part recovered in a few weeks.
  #3  
Unread 04-17-2014, 01:06 AM
Re: 1 year post-op, kept ovaries, now BRCA1 mutation?!

Thank you for the data point! I just can't seem to find as much information on the recover from BSO without a full hysterectomy!
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  #4  
Unread 04-29-2014, 01:51 AM
Re: 1 year post-op, kept ovaries, now BRCA1 mutation?!

If you read some of the threads in the "separate surgeries" forum, you may get a better idea. That forum is specifically for women who have to have an oophorectomy or trachylectomy after hysterectomy. So sorry about your news So happy you know so you can be proactive about it!
  #5  
Unread 04-29-2014, 09:45 AM
Re: 1 year post-op, kept ovaries, now BRCA1 mutation?!

Thank you! I hadn't seen that forum!
  #6  
Unread 05-19-2015, 08:46 PM
Re: 1 year post-op, kept ovaries, now BRCA1 mutation?!

  Quote:
Originally Posted by KDDSJC View Post
So, I had a hysterectomy in November 2012 because of severe pain related to fibroids, adhesions, and a bunch of other craziness going on in there. I had debated long and hard about keeping my ovaries. My grandmother died of ovarian cancer but that was the only family history as far as I knew. Since I was only 34 I decided to keep my ovaries because I do have a strong family history of osteoporosis and heart disease, both of which are exacerbated by menopause. Then in July, my sister was diagnosed with ovarian cancer at 33. I have now found out I have a BRCA1 mutation and I feel like I'm having to start all over.

Has anyone had a BSO separately from a hysterectomy? It sounds like the recovery might be similar. My hysterectomy did not go as planned (abdominal instead of laparoscopic and more extensive because of unexpected craziness in there) and the recovery was pretty rough. The idea of going through that again makes me want to cry! But the thought of getting ovarian cancer - which is how it's presenting itself in my family - is equally stressful.

I have a medical team that I trust but the diagnosis is still new. My sister is now done with chemo and doing well - they caught the cancer very early during surgery for a painful cyst. But now she, my other sister, my mom, and I are all trying to figure out what to do with the news of the mutation.

Any thoughts? Thank you!!
Hello, dear. I feel your pain. I am BRCA1+ too...it sucks.I would absolutely have your ovaries out. Your family history is a tell tale sign of things to come...and it is when, not if. Percentages of cancer are way too high for brca1 people. You definitely don't want to gamble with your life. BRCA runs in my family, my grandmother died of uterine cancer, 2 cousins from breast cancer, and it was thought i had ovarian cancer....i was supposed to have vaginal hyster until they got in there and went to pull everything out and a cyst the size of a grapefruit never seen on the vaginal ultrasound got hung up on my ureter coming out of my kidney. THey cut me end to end. It sucks, i wont lie. Hot flashes, weight gain, sleepless nights...all fun stuff. But when i think about the alternative and i look at my family, it makes it all worth it. I ish you nothing but the best for you. You WILL get through it. You are stronger than you think! ps...make sure all members of your family get tested.
  #7  
Unread 05-20-2015, 02:06 AM
Re: 1 year post-op, kept ovaries, now BRCA1 mutation?!

Some articles that may help:

BRCA Information

BRCA Testing Positive

BRCA+ and Prophylactic Salpingectomy

Genetic Counselor

Hereditary Cancer vs. Genetic Cancer

I wish you all the luck and in the world. We are here for you!
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