Before my breast cancer diagnosis and positive BRCA gene mutation test, my knowledge of hysterectomy was limited. I knew two things: first, that the term "hysterectomy" originated from a time when, ahem, ignorant men labeled women as hysterical, believing that removing the uterus could "cure" them; and second, that hysterectomy involved the surgical removal of a woman’s reproductive organs. While the first point is so messed up that it doesn’t warrant a response, the second requires more attention. 

There are several different types of hysterectomy procedures, each with unique benefits related to cancer risk reduction and other factors. Some of these procedures may involve the removal of ovaries (oophorectomy), which is often an important consideration for women with breast cancer, survivors, or those carrying BRCA gene mutations. Understanding the types of procedures, the reasons for undergoing them, and their implications for cancer risk and hormonal health is essential for making informed decisions.

There is an exorbitant amount of information here; each point could easily be at least its own 5,000 word plus article, so I’m going to provide the Cliff’s Notes version of what I found most helpful when I was deciding which surgery to pursue. Once armed with this foundation of information, I encourage you to do your own research and discuss with your healthcare team or genetic counselor. 

Before delving in, here are some important BRCA statistics to remember:

• Women with the BRCA1 mutation have a 55-80% lifetime risk of developing breast cancer by age 70, while those with the BRCA2 mutation have a 40-60% risk.

• BRCA carriers who have had breast cancer face an increased risk of developing cancer in the opposite breast and a higher likelihood of recurrence locally or metastasis. 

• BRCA gene mutations significantly raise the risk of ovarian cancer, with BRCA1 carriers facing a 35-45% chance and BRCA2 carriers facing a 12-20% chance, along with potential risks for other cancers.

(For more: read our articles about BRCA,  breast cancer and BRCA, and BRCA preventative options)

Hysterectomy

Definition: A hysterectomy is a surgical procedure that involves the removal of the uterus (also called the womb) - and contrary to what many people think, not the ovaries (unless combined with an oophorectomy, but more on that later). A hysterectomy can take various forms based on individual circumstances and medical recommendations:

1. Total Hysterectomy:

• Removal of the entire uterus along with the cervix
  

• Commonly performed for conditions such as uterine cancer, prolapsed uterus, or fibroids

2. Partial (Subtotal or Supracervical) Hysterectomy:

• Removal of the upper part of the uterus, leaving the cervix intact
  

• If the ovaries are still present, this option preserves some hormonal function, as the ovaries continue to produce hormones like estrogen and progesterone. This surgery is also considered for those suffering from fibroids, uterine prolapse, endometriosis, or unrelieved pelvic pain.
  

3. Radical Hysterectomy:

• Removal of the uterus, cervix, surrounding tissues, and sometimes part of the vagina
  

• Typically performed in cases of cervical or uterine cancer

Why would someone with breast cancer, a breast cancer survivor, or a BRCA carrier choose a hysterectomy?

• Cancer Prevention: Women with BRCA mutations face a significantly increased risk of developing breast and ovarian cancers (see stats above). A hysterectomy, when combined with oophorectomy (removal of ovaries - TBD), can be a proactive measure to reduce the risk of both these cancers; specifically, for breast cancer, the combination of hysterectomy and oophorectomy stops the primary source of estrogen production (ovaries), lowering the risk of hormone-sensitive breast cancers.
  

• Treatment of Existing Cancer: If a woman has been diagnosed with cancer of the uterus or cervix, a hysterectomy may be necessary as part of her treatment plan.
  

• May Lower Risk of Breast Cancer Recurrence:  For women with hormone receptor-positive breast cancer, a total hysterectomy may be considered as a strategy to reduce estrogen and potentially lower the risk of recurrence; in fact, research suggests that women who undergo a hysterectomy have improved overall survival rates specific to breast cancer.
  

• Uterine and Cervical Cancer Risk Reduction: A total hysterectomy virtually eliminates the risk of developing uterine and cervical cancers.
  

Resulting Side Effects:

• Fertility: A total hysterectomy leads to permanent infertility, while a partial hysterectomy may allow for the possibility of pregnancy if the ovaries are still intact. However, even in cases of partial hysterectomy, carrying the embryo is not feasible; a surrogate would be required.
  

• Menstrual Cycle: After a total hysterectomy, a woman will no longer get her period (for a quick recap from sex ed - our period involves the shedding of the uterine lining that builds up each month in preparation for a potential pregnancy. If pregnancy doesn't occur, this lining is expelled, resulting in menstrual bleeding).
  

• Hormone Replacement Therapy (HRT):  After a total hysterectomy without oophorectomy (where ovaries are preserved), HRT needs depend on many things, like age, cancer risk-factors, and hormonal balance. If experiencing menopausal symptoms, estrogen therapy may be beneficial, while progesterone is less of a concern without the uterus. Women who have both the uterus and ovaries removed typically receive estrogen replacement therapy (ERT) alone. 

However, the decision to use HRT is complex, especially for women with a history of certain types of cancer, as it may come with risks and requires a much more in-depth discussion with your oncologist. While vaginal estradiol, available in cream and suppository pill forms, has been deemed safe for patients with hormone-driven breast cancers and is a game changer for those experiencing painful vaginal atrophy (the thinning and drying of vaginal walls due to low estrogen levels, often causing discomfort and dryness), it may still be contraindicated for individuals with certain cancers, such as triple-positive.

Oophorectomy

Definition: An oophorectomy is a surgical procedure that involves the removal of one or both ovaries. In the context of breast and ovarian cancer, particularly for those with BRCA gene mutations, oophorectomy may play a crucial role in managing overall cancer risk. While this article is focusing on BRCA, there are many other hereditary cancer gene mutations identified in patients with ovarian cancer, such as BRIP1, RAD51C, RAD51D, PALB2, BARD1, NBN, and CHEK2, in which oophorectomy can help lower risk. 

Different Kinds of Oophorectomy:

1. Unilateral Oophorectomy:

• Removal of one ovary, typically done for localized issues like cysts or tumors
  

2. Bilateral Oophorectomy:

• Removal of both ovaries, often recommended for women with BRCA mutations or those at high risk for ovarian cancer
  

3. Salpingo-Oophorectomy:

• Removal of one or both ovaries along with the associated fallopian tubes, typically as a preventive measure against ovarian cancer

Why would someone with breast cancer, a breast cancer survivor, or a BRCA carrier choose an oophorectomy?

• Breast cancer risk reduction:
  

• The ovaries produce estrogen, which can fuel certain breast cancers. Removing the ovaries may therefore help lower risk for breast cancer recurrence.
  

• For BRCA mutation carriers and women at high risk, the removal of the ovaries and fallopian tubes offers an approximately 50-56% reduction in breast cancer risk.

• Having an oophorectomy can decrease the risk of breast cancer by approximately 50-70% in women diagnosed with hormone receptor-positive breast cancer. 

• Ovarian cancer risk reduction:

• A bilateral oophorectomy significantly reduces the risk of developing ovarian cancer for BRCA carriers by 80-90%; studies show that women with BRCA mutations who undergo a bilateral salpingo-oophorectomy can lower their risk of ovarian cancer by this same percentage.
  

• For women without BRCA gene mutations, a bilateral oophorectomy can reduce the risk of ovarian cancer by approximately 50-70%.

Resulting Side Effects:

• Surgical Menopause: If a woman who undergoes this surgery is not already in menopause, then when both ovaries are removed, an oophorectomy will instantly put her into surgical menopause, which may include side effects such as hot flashes, lower libido, vagina dryness, and more  - due to the removal of the primary source of estrogen and progesterone production.
  

• Infertility: A bilateral oophorectomy results in permanent infertility, while retaining one ovary allows for the possibility of pregnancy.
  

• Menstrual Cycle: If both ovaries are removed, menstruation will cease immediately. If one ovary and the uterus remains, menstrual cycles may continue but could be irregular.
  

• Hormone Replacement Therapy (HRT): Women who have had both ovaries removed may experience significant menopausal symptoms and may benefit from HRT. The decision to use HRT, particularly in those with a history of hormone receptor-positive breast cancer, should involve a personalized discussion with a healthcare provider. 

Women who have both their uterus and ovaries removed typically receive estrogen replacement therapy (ERT) alone. In contrast, women who have only their ovaries removed need both estrogen and progesterone, as estrogen alone can increase the risk of uterine and endometrial cancers - adding progesterone mitigates this risk. Progesterone is also needed to balance the effects of estrogen therapy. Some women opt against this and choose to have both the uterus removed along with the ovaries as side effects of taking progesterone can include mood changes, breast tenderness, headaches, bloating, weight gain, fatigue, dizziness, nausea, decreased libido, and an increased risk of blood clots.

The Route I Chose: Total Hysterectomy with Salpingo-Bilateral Oophorectomy

After much weighing of all the overwhelming life and body changes that would come with the different surgeries, the pros and cons, doing research, and having multiple discussions with healthcare professionals, genetic counselors, and other women who had gone through the surgeries, I chose to undergo a total hysterectomy alongside a salpingo-bilateral oophorectomy. For those like myself with a personal history of breast cancer, family history of ovarian cancer, and BRCA1 mutation, having both surgeries can be a huge proactive step to mitigate the risk of future cancers, offering peace of mind. 

Ultimately, this decision requires a collaborative approach with your healthcare team, carefully considering your unique health circumstances along with the potential risks and benefits involved. 

To learn more about the specifics of each of these surgeries, what to expect, and how to prepare, read our article, Hysterectomy and Oophorectomy: Laparoscopic, Open, or Vaginal Surgery.