Keep or remove the uterus?
This Monday my sister is having a double mastectomy and both ovaries and Fallopian tubes removed. Her surgeon also wanted to remove her uterus, but she said no.
I shared this with a friend who is very informed and knowledgeable, though not an expert, about medical issues. She said that she'd have the uterus removed as it is a hotbed of activity for cancer cells.
Is she right? Did my sister make the best decision? As I've mentioned elsewhere in this forum, my sister triple negative and has the BRCA1 gene mutation.
Comments
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What would be the downside of removing the uterus? Has she explained why she wants to keep it? If I were her I'd want it out.
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I just went through this and I had my uterus removed. This is what all doctors on my team suggested and to be honest, it wasn't even presented to me as a choice. If I ever change to Tamoxifen therapy, at least I don't have to worry about the endometrial cancer risk. I did worry that having the uterus removed would affect my bladder function, but so far I haven't noticed a big difference.
My MO pointed out that BRCA mutations can potentially cause problems that have not been discovered yet. If it were me I'd err on the side of caution. Still, it is her decision to make and if her mind is made up I wouldn't try to push her. I'm curious, what are her reasons for wanting to keep it?
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A friend from church had a situation where there were pre-cancerous cells so she had her’s removed. I took Tamoxifen for 5 years but I was more concerned with a blood clot since I had one many years ago. If it were me I would have it removed. I wouldn't tempt possible fate. My MO took me off Tamoxifen after 5 years because of the blood clot risk
Diane
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I emailed my sister last night and asked about her decision. She hasn't answered me She has her pre-OP appointment today. I will speak to her later today.
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I have a different gene mutation and decided to have my uterus removed as well. My GYN Onc surgeon had a patient, at the same time I had my surgery, with my same mutation who was only having ovaries and tubes and my surgeon said she would have preferred the patient to have chosen to take the uterus. My PCP also said to take everything. No upside at all to keep the uterus and cervix, but risk if you keep it.
The recovery is more than just ovaries and tubes, but your sister is having a mastectomy so she will be having a bigger recovery anyhow. Which leads me to ask if her medical team would do both the hysterectomy and mastectomy at the same time? Ovaries and tubes is like getting your tubes tied. Outpatient procedure and OTC pain meds. The hysterectomy is not....
So sorry you and your sister both are on the journey. Wishing you both the best. Keep us posted
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SimoneRC, thanks for your well wishes.
My sister still hasn't gotten back to me. I can only assume she doesn't want to discuss her decision. Perhaps when she has her pre-op visit today she will change her mind.
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I spoke with my sister and she said she was told removing the uterus would keep her from work 3-4 months. She can't afford to miss that much work. Her second surgeon wasn't as concerned however not happy that the other surgeon told her about all these surgeries in bits and pieces over a period of months when she's had test results for some time.
My sister is a smart woman so I don't think she made her decision very lightly. I pray it's the right one.
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Sending positive thoughts to you and your sister, viewfinder! In my experience and on the hystersisters website, most women with desk jobs go back to work at 6 - 8 weeks. I hope all goes well for your sister, and you!!
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That seems like a long recovery window to me. Then again, I don't know her particular situation and what kind of work she does, so I'm sure her surgeon knows best about that. We all have to make the choices that we are most comfortable with.
I wish her all the best, and you as well. I'm sorry that you are both going through this.
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Thank you all for you kind and thoughtful remarks.
I just had a talk with my sister and told her, despite the terrible and untimely communication by one of her surgeons, in my heart of hearts I believe she should have her uterus removed. But it will significantly interfere with the type of work she does, so we're hoping she can have that surgery in a year or two. She is 70 years old and has a few other medical problems so with a double mastectomy, ovaries and Fallopian tubes all removed in one swipe, I think it's reasonable to expect that recovery could take longer than 6-8 weeks if she had her uterus removed at the same time.
Her next event is early September and there's a huge amount of prep before, during and after the show. It's not a desk-top job so, unfortunately, she just can't walk into the office and ask for medical time off. This past March, she missed her first show in years because of her surgeries and chemo. She's trained good people but she doesn't want to miss two shows in a row for the organization she represents.
Thank you again! I'm having a rough time with this and venting does help!
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You are a very good sister to be so concerned. Recovery from any surgery can be tough (and can come with unforeseen complications). I think she will have enough on her plate for now. Once she has had some time to heal, then it will be time to think about the uterus. When I had a simple hysterectomy, with nothing else medical going on, it was 6 weeks of restricted activity and probably 2 months before I felt 100%, so it is something I wouldn't have wanted to do along with another major surgery.
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As far as I know, BRCA1 pathogenic mutations confer an increased risk for breast and ovarian cancer, but not for uterine cancer. And I believe that hysterectomy increases the risk of bladder prolapse, which can be a very difficult thing to live with or try to fix. Also the cervix (lowest part of the uterus) may be important for sexual function. So there are some points supporting your sister's conservative approach. We can't just start removing body parts out of fear when there is no real medical reason. Obviously her doctors ought to know the specifics of her case and give good reasons why she should or should not have a hysterectomy. Surgeons do like to recommend surgery.
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Thanks ruthbru and ShetlandPony. Your insights have been very helpful. I think my sister made the right decision to hold off on the surgery unless something new is discovered when they do the surgery on Monday.
Been doing more research and it seems the findings are mixed, and some of the research is old. But here are some things that I found interesting (snippets listed in no special order). I hope some of these help others who may find themselves in the same situation as my sister.
Is Risk of Uterine Cancer Increased in BRCA Mutation Carriers?
"Using tamoxifen has been shown to increase uterine cancer risk, and has been suggested to be responsible for at least some of the uterine cancer risk that has been reported in BRCA mutation carriers."
NOTE: My sister can't use medicines like tamoxifen because she is triple negative.
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Risk of uterine cancer for BRCA1 and BRCA2 mutation carriers (Oct 2017)
"Our findings are consistent with those from most other reports and do not support routine risk-reducing hysterectomy for BRCA1 and BRCA2 mutation carriers.
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Women with BRCA1 Gene Mutation at Higher Risk of Deadly Uterine Cancer (October 2016)
"Kauff cautioned that for women with BRCA1 mutations who have already undergone surgeries to remove their ovaries and fallopian tubes, the findings are less clear.
"We need additional studies to address whether a 25-year risk of serous uterine cancer of 2.6 percent to 4.7 percent justifies the costs and potential complications of a second surgery," Kauff said.
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I'm a BRCA-carrier — should I have a hysterectomy? March 2018
"Therefore unless there is a history of this rare type of cancer in a BRCA-carrier's family, we would not usually advice [sic] having a hysterectomy as part of risk-reducing surgery."
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