Scared for salpingo oophorectomy, complete hysterectomy

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Nikki1986
Nikki1986 Member Posts: 21
edited November 2015 in Surgery - Before, During, and After

Hi all!

I am 29 and on Monday I am scheduled for prophylactic bilat salpingo oophorectomy & complete hysterectomy due to being BRCA 1+ . This seems scarier to me than my 16 rounds of chemo and mastectomy. I am frightened of the side effects I may experience. And of course its very depressing knowing that I wont be able to have any more children. I feel like not showing up to surgery. Anyone had this done at such a young age? Words of encouragement? Anything please!

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  • jenjenl
    jenjenl Member Posts: 948
    edited November 2015

    I was 33 when i had all that done. It was an easy surgery for me, compared to mx. Its been fine, so far no big side effects - hot flashes suck and weight gain (but i could be countering that but im slack). I had a dexa scan and no osteoporosis. Im interested to see what its like in 10 yrs.


    Edit to add. I am so happy i did it and its one less thing to worry about.

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  • Nikki1986
    Nikki1986 Member Posts: 21
    edited November 2015

    Thanks for the input. I am definitely worried about weight gain :( Since i gained 30lbs on chemo I cannot afford to gain anymore!

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  • inks
    inks Member Posts: 746
    edited November 2015

    Why are you letting the uterus go? BRCA does not mess with the uterus.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited November 2015

    I agree, why not just do the BSO and keep your uterus?

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  • Nikki1986
    Nikki1986 Member Posts: 21
    edited November 2015

    It was the recommendation of 2 of my Drs to just get it all out. All the negative symptoms come from the absence of ovaries right?

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  • inks
    inks Member Posts: 746
    edited November 2015

    Nothing negative will happen to your uterus after removing the ovaries. But if your uterus is gone you may get prolapse or incontinence. And since you are triple negative and want to have children at some point have you asked why you can't just do Lupron or zoladex injections. They normally do not recommend oophorectomy until age 35 with BRCA1. Did someone in your family get ovarian cancer at your current age? Did you at least freeze some eggs? Where are these doctors that are giving you such unusual advice? Are you talking to a gynecologic oncologist?

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  • inks
    inks Member Posts: 746
    edited November 2015

    My oncologic gynecologist went to Yale and I only got laparoscopic oophorectomy. Why would they want to butcher you at such a young age?

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  • slv58
    slv58 Member Posts: 1,216
    edited November 2015

    Inks, I understand everyone is allowed to have their own opinion, but I take offence to your use of such strong statement. I don't think the word 'butcher' is necessary, especially since the treatment suggested was from Nikki's Doctor- maybe there are reasons we don't know about. I agree that it would be good for her to question and feel comfortable with her decision- but it is her decision. 

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  • inks
    inks Member Posts: 746
    edited November 2015

    slv58 - I understand that you may not like the strong wording I used but it seems the OP was not made aware of all the risks with such surgery. She herself is unaware of the benefits this hysterectomy will give her. The doctors obvoisly have not explained to her in detail what the side effects are if a major concern is weight gain. Did she even get counseling about her reproductive options. I thought nowadays everyone has to get counseling about their reproductive options before undertaking irreversible procedures?

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited November 2015

    Hi Nikki

    I had this all done at age 48, so a much different story. I am brca2 positive and at the time had stage 2b breast cancer. My treatment team recomended an above the cervix hysterectomy and oophorectomy to reduce production of estrogen and so I would not have to worry about uterian cancer risk with tomoxiphan(I was premenapausal at dx).

    The surgery was relatively easy and recovery nearly pain free. I did struggle with weight gain but once my body adjusted, about one year after dx, I was able to lose the 25 pounds I gained during treatment. I was beating mysef up about the weight gain. I wish I would have been kinder to myself, because once mt body was ready the weight loss was fairly easy. And that. had never been true for me. I was on a low carb diet for three months and now, I maintain the loss with no food restrictions.

    I do wish you well. I really liked and trusted my treatment team and that helped me to. move forward. I was done having children so I did not have to face that difficult question. Sending you healing thoughts.

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  • Nikki1986
    Nikki1986 Member Posts: 21
    edited November 2015

    The recommendations were from my oncologist and my gynecology oncologist. I didnt freeze my eggs because its not something my insurance covers and its not something I can afford. I do have 2 beautiful children but its still upsetting to just be done having kids at this age.

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  • Nikki1986
    Nikki1986 Member Posts: 21
    edited November 2015

    Also it was recommended to do the surgery now because I was pretty young at BC dx (28) & since I already have children to be proactive and do the surgery sooner rather than later. My Drs are aware of my concerns and arent pressuring me if im not mentally ready.

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited November 2015

    New studies were out in March which found more aggressive uterine cancers in BRCA1 women. Since Tamoxifen is known to increase uterine issues as well, many BRCA1+ patients are considering removing the uterus now also. I am guessing that is why your docs are recommending it.

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited November 2015

    Can't do links from my tablet, but for those who are interested, do a google search for "BRCA 1 Linked To Higher Risk For Aggressive Uterine Cancer" - medscape. FORCE website also has some info on this as well.

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  • KellyAnne13
    KellyAnne13 Member Posts: 63
    edited November 2015

    Hi Nikki,

    Although I am much older than you (47), our cancers sound similar. I am not BRCA+ but have a very strong family history and have had full genetic testing and counselling that determined there was very likely a genetic factor. Because of this I opted for a bilateral salpingo-oophorectomy, which I had Oct 15. Last year I also had some abnormal cells on my cervix and had a LEEP procedure to have them removed. Just before surgery I found out that a recent endo-pap that suggested abnormal cells. Despite this, my gyne onc surgeon absolutely did not want to do a hysterectomy because of potential side effects (prolapse, etc). Instead, we did another LEEP. She mentioned that we could always remove it later... but we could not put it back.

    As well, I see your cancer was triple negative, as was mine. Because it isn't fueled by hormones you can do hormone replacement therapy! I just started a few days ago. I have worked with physicians in the past who prescribe bio identical hormones so I did have some knowledge going in. I went to a clinic that specializes in this and does proper testing and monitoring. Not cheap, but well worth it.

    If you are questioning anything please don't just jump in. Do the research and find out your options first. Get another opinion. If you are considering another child, find out if it's practical to wait a few years.

    Good luck, these are all such hard decisions

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