This is a compilation of what we’re learning to ask using resources from the book Positive Results, speaking to other women who have gone through prophylactic surgeries due to a BRCA mutation, speaking with doctors, and from reading blogs, articles, and websites. This is not a comprehensive list and we are not medical professionals. Please add additional questions in the comments so we can further build this list! If you are interested, we also started a What to Ask… Breast post.
Bilateral Salpingo-Oophorectomy (BSO) with or without Total Hysterectomy
This laparoscopic (or abdominal) procedure removes ovaries and fallopian tubes and can also remove uterus and cervix. Decisions to do either to reduce the risk for ovarian cancer are very personal. My gynecologist and oncologist both said that because I had no other complications–no cycts, fibroids, diabetes, non smoker–and because there is such a very small risk of cancer due to cells left behind from fallopian tubes to uterus or uterine cancer– there was no urgency to take the uterus. They both recommended I only do ovaries and fallopians. I can always have a hysterectomy later if there are any signs I should do that. I liked the idea of less risk to my organs in the surgery, less time recovering, and the option to always do it later. I was doing my PBM in December so I was also considering my recovery and prep for that. That said, one only has to be on estrogen (vs also progesterone) for Hormone Replacement Therapy (HRT) if you also remove the uterus. If you leave the uterus and cervix and a cancer develops, there is the risk of it progressing to other areas.
- How many of the specific procedure have they performed?
- What are the complications that other patients have experienced?
- What percentage of their patients has experienced complications?
- Ask for patients who would be willing to talk about their experience
- Ask if a resident, intern or fellow will be performing any part of the surgery or will be involved in your care. In my opinion, and many others, you only want the surgeon doing any and all of the procedure. Make sure they can tell you with confidence that only the surgeon you are interviewing will be performing the surgery (they may have assists, and that’s ok). I have talked to some women who changed doctors and hospitals as they did not want to be associated with a teaching hospital.
- Get diagnostic codes for the procedures so you can share with your insurance to get a guess at what your out of pocket expenses will be
- When does one stop birth control pills prior to surgery?
- How soon after surgery do we get results of pathology to ensure no cancer?
- Pre surgery prep? What is bowel prep?
- How long do they expect the surgery to be?
- What happens to nerves and blood vessels?
- What happens in the space left after removal?
- Pelvic floor issues with removing uterus (ie incontinence or vaginal prolapse) what is the risk and how prevent or fix?
- Risk to bladder and bowel when removing uterus and cervix?
- Can the doctor decide that bladder prolapse is an issue and not remove the uterus and cervix?
- I tend to get very nauseas from anesthesia and pain killers, is there anything they can do about this? Meds they can provide me into my recovery?
- What are the expectations when you wake up (ie your mobility, how soon will they get you up to walk around, pain, bleeding, cramping)?
- Will there be a catheter to drain urine?
- Do you recommend compression stockings to prevent blood clots?
- How long in hospital? (Some suggest to have at least a night for IV pain meds vs oral)
- Will I have a private room so my husband/partner/family can stay over night?
- I understand they pump air into the abdomen to see the organs best, how deal with gas after? Why is there associated shoulder pain?
- What about constipation from pain meds?
- What physical restrictions are part of the recovery and for how long? (ie restrictions on what you can lift, when can you exercise and what kind, when can you do more “normal” things, have sex?)
- Are they available for questions during recovery?
- What happens if there are complications?
- What will help with recovery?
- When do they expect you can return to work?
- How long might one expect to have menopausal symptoms?
- Who will talk to me about menopause? I understand that the physical and emotional symptoms of menopause may disrupt sleep, cause hot flashes, lower your energy and sex drive and for some women, can trigger anxiety or feelings of sadness and loss.
- Other sexual side effects and how to minimize?
- Why do hormone replacement therapy (HRT)?
- What would the HRT protocol look like? Animal vs synthetic estrogen?
- What if one doesn’t do HRT at all?
- Can I do HRT if I have had melanoma (other cancers)?
- Risks of taking hormones?
- What is vaginal estrogen and how do you take it?
- What medicines or remedies help with menopausal symptoms? (heard that cinnamon capsules can help hot flashes as well as Phyto B supplements?)
- When would you prescribe Vagifem? Is it safe? For how long can one use it safely? How does it help vaginal atrophy (thinning and shrinking of vaginal tissues and the decreased lubrication of the vaginal walls)? Would Replens (moisturizer) decrease need for Vagifem?
- Any natural alternatives to these products?
- Certain antidepressants have been used to help with menopause symptoms (such as hot flashes/night sweats, sleep issues, mood changes)… are these a good alternative to hormones?
- Having been on birth control pills to also help with acne, are there any issues with taking acne meds while on hormones ?
- Osteoporosis risks? Bone building/protecting medications, supplements or foods?
- What other issues could be triggered by BRCA2 if the opph/hyst are done?
- If no cervix, does this mean no pap smears? What about pelvic exams?
- What kind of continued surveillance do we do once I’m fully healed?