BRCA1 positive and triple negative...a... - Breast Cancer Haven

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BRCA1 positive and triple negative...anybody did prophylactic hysterectomy with oophrectomy ? Any side effects?

Arumana
Arumana

Hi,

I am 43 years old BRCA1 positive and triple negative breast cancer carrier. I am scheduled for prophylactic hysterectomy and oophrectomy. I am confused about whether I should remove cervix too for future concern! Anybody did that and any side effects?

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Hidden
Hidden

Hi Arumana. I had total abdominal (open, old-fashioned) hysterectomy and bilateral salpingo-oophorectomy a little over two years ago, about three months after my breast cancer diagnosis.

My menopause had been some fifteen years before that surgery, so there were no effects of sudden estrogen deprivation, as likely would happen with pre-menopausal women. Because my breast cancer is hormone receptor positive, I have been taking an anti-hormonal medicine to minimize the estrogen in my system anyway.

My incision was just above my pubic area. I understand the upper (innermost) end of my vagina was sewn together to close it since there was no longer the uterus and its cervix there to block/close that end of it.

I had to stay in the hospital overnight and until about the middle of the next day, when the Doctors had seen me and approved me going home.

A little spot of blood came out of my vagina during my first day back home. For the next several days, my urine stream (rate of flow) was not as even/steady as before. I was directed not to make any bearing pressure on my abdomen area, as one might do with certain routine motions (like squatting; standing from squatting; or sitting up after reclining, for which I had to use my arms instead of any abdominal strength) or with excretory functions.

It was a long recovery with much pain to start, and with strict lifting restrictions for months. For a time in the beginning, I had to support my incision by holding a pillow against that area when sneezing, when turning over in bed, anything like that.

About your cervix question -- Ask your Doctors to discuss with you the risk of bladder prolapse (and any other reasons the cervix might be left in place), and how that risk might be managed or reduced. Be mindful that yours is not a typical hysterectomy case with typical considerations -- your surgery is to head off the most serious disease. I am not a Doctor, but I expect that your Doctors will recommend removal of the entire uterus, including the cervix, because of the cancer risk. I think it may give you better peace of mind, knowing you are doing all you can to head off cancer. Do ask your Doctors.

I understand the recovery is easier when the surgery is done laparoscopically. Still, there would be strict lifting restrictions. You would need a lot of assistance while you are healing.

Whatever you decide, I hope it all goes very well for you.

Wishes for your Peace, Comfort, and Healing.

nytimes.com/2013/05/14/opin...

Arumana
Arumana in reply to Hidden

Thanks for your reply and suggestions. I am going to meet my Gyno tomorrow , hope I would get some answers. I will go for open surgery too. My Dr said , she wants to see inside for peace of mind. I know it wil take months to heal completely, I had c section experience. As a premenopausal woman , I have too many concerns about this surgery.

How long are you out of cancer?

Take care.

RuthJ
RuthJ in reply to Arumana

Hi Arumana I am also pre menopausal I have had my ovaries and tubes only removed. I had the op to put me on the menopause as I didn’t get on with tamoxifen so now on anastrazole which is much for bearable for me. I had keyhole and was ok after 3 days but you are having a much bigger op. Good luck x

Arumana
Arumana in reply to RuthJ

Thank you ruthj for your reply. I couldn't do the surgery yet. I had to reschedule it for some unexpected reasons. I am anxiously waiting to face the after effect. Why did you do that? Dr s suggestion or yours?

RuthJ
RuthJ in reply to Arumana

I was having terrible side effects on tamoxifen so had to have them removed to be able to take a different hormone tablet now on anastrazole which for me is better I still get slight joint pain but tamoxifen for me was making me feel like I had pmt all the time my head was all over the place. For me it was the best thing ever xx

Arumana
Arumana in reply to RuthJ

Thanks for your reply.Take care.

Hidden
Hidden in reply to Arumana

Two and a half years since my last cancer surgery, and on anti-hormonal medicine since. I do not expect I will ever feel that it is all behind me. I have just recently been coming around to living, spending, and planning as if I may have some appreciable future.

Arumana
Arumana in reply to Hidden

Hi kewpie,

I am always fighting with my thoughts. I have been trying to come back to normal life. Actually I am forcing myself to do normal thing. Just 2 months back I couldn't even buy anything for me. I used to feel everything useless. My husband is my pillar of strength, he always says encouraging words. Now I think , nobody knows who is going to survive how long, I don't know either. Whatever life I have, I don't want to waste anymore. I want to spend quality time with my family, I want to have whatever I want.

All my preventative treatment not done yet. Still this things cant let me go back to normal life , but my fight go on :-)

Take care.

Hidden
Hidden

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