I'm a BRCA-carrier — should I have a hysterectomy?

Adam Rosenthal collage

A topic that comes up regularly amongst BRCA mutation carriers is whether it is necessary to have a full hysterectomy at the same time as having their ovaries and fallopian tubes removed. To get an expert view, we asked Mr Adam Rosenthal, Consultant Gynaecologist, UCLH to clear up the confusion.

“Should BRCA-carriers have a hysterectomy when having their ovaries and fallopian tubes removed to prevent ovarian/tubal cancer?”

This is a question that women with BRCA mutations contemplating risk-reducing surgery to prevent ovarian cancer may ask themselves and their doctors. 

The short answer is that currently, experts working in this area don’t feel that there is enough evidence to routinely justify this operation for most BRCA-carriers. 

Hysterectomy is a bigger operation than just having the tubes and ovaries removed. It takes longer to recover from a hysterectomy and there is a greater risk of complications, including infections, blood clots and damage to other organs, such as the bladder or bowel. Whilst in most cases these risks are not high, it is not good practice to expose patients to the side-effects of bigger operations unless the benefits outweighs the risks.

The key question is do BRCA-carriers have a significantly higher risk of womb (‘endometrial’) cancer compared to the general public?

There are two reasons why they might have a higher risk:

  • BRCA1 and BRCA2 mutations might increase the risk of womb cancer.

  • Such women might be taking tamoxifen, either as treatment for breast cancer, or to prevent breast cancer if they have never had it. Tamoxifen is known to increase the risk of womb cancer in the general population, so it may do the same in BRCA-carriers.

Current evidence indicates that having a BRCA1 or BRCA2 gene mutation does not increase the risk of ‘endometrioid endometrial’ cancer – the commonest type of womb cancer. This suggests that even if a BRCA-carrier has taken/is taking tamoxifen, the risk of womb cancer is not sufficiently high to justify a hysterectomy as part of risk-reducing surgery.

There is evidence to suggest that BRCA1 (but not BRCA2) mutation carriers have a higher risk of a rare type of womb cancer known as ‘serous endometrial’ cancer. However, because this is a rare cancer, even though the risk is increased in BRCA1-carriers, the chance of being diagnosed with this type of cancer by age 70 years is estimated to be only around 1 in 40. So that means that 40 women would need to have a hysterectomy to prevent one case of this cancer. Therefore unless there is a history of this rare type of cancer in a BRCA-carrier’s family, we would not usually advice having a hysterectomy as part of risk-reducing surgery.

However, it’s important to remember that every case is different, and some women will have other gynaecological problems or be particularly concerned about their risk of womb cancer. In such cases, a careful discussion with an expert gynaecologist will help to decide if a hysterectomy is justifiable or not.

Finally, it’s worth remembering that the commonest symptom of womb cancer is abnormal vaginal bleeding. So any BRCA-carrier who experiences unscheduled vaginal bleeding (bleeding after sex, between periods, or after the menopause) should discuss this with their gynaecologist, who should have a low threshold for investigating this further. If she is taking a type of HRT which causes regular monthly bleeds, then such bleeds are normal as long as they don’t bleed at other times.

For more information about BRCA, visit our BRCA Hub.