How can I reduce my inherited cancer risk

Once you know your risk, the next step is understanding how you can reduce and manage your risk. There is no one way or choice to reduce your risk. Talk to your doctor about which options and actions are best for you.

If you have been identified as having a significant risk of cancer, there are a number of different options for you to consider. The below focuses on how to reduce your risk of breast and ovarian cancer.

What is breast cancer risk-reducing medication?

Risk-reducing medication may be considered for use by people who have been assessed as being at increased risk of breast cancer (such as those who carry a gene mutation). These medications include Selective Estrogen Receptor Modulators (SERMs) such as Tamoxifen (which can work in women before and after menopause) and Raloxifene which has only been tested in postmenopausal women. The decision to take risk-reducing medication should only be made after a discussion with your medical team about all relevant risk management options, including screening, and risk-reducing surgery (if appropriate).

What is a risk-reducing mastectomy?

A mastectomy is the medical term for the surgical removal of one breast and is usually done to treat breast cancer.

‘Risk-reducing mastectomy’ is the term for the removal of both breasts to minimise the risk of cancer developing in healthy breast tissue that does not have cancer. This can also be called a bilateral prophylactic mastectomy.

When deciding whether risk-reducing mastectomy are right for you, it is important to know what is involved. Talking to a breast surgeon and (if required) a reconstructive surgeon about your situation is the best way of finding out what the surgery may involve and what it means for you. There are several different types of mastectomies.

What are the different types of mastectomies?

Total mastectomy – A total mastectomy involves removing as much of the breast tissue as possible. The nipple, the areola and most of the skin covering the breast is also removed.

Skin-sparing mastectomy – This approach involves removing as much of the breast tissue as possible, as well as the nipple and areola. The skin that was covering the breast is preserved, making it easier to maintain the contour of the breast when reconstruction is done.

Nipple-sparing mastectomy – In this procedure, as much of the breast tissue as possible is removed while leaving in place all the skin, the nipple (which contains breast ducts) and the areola. This can leave slightly more tissue behind than with total or skin-sparing mastectomies.

Sometimes, a procedure called ‘nipple delay’ is done 1-3 weeks before the mastectomies. In this procedure, the blood supply to the nipple from the underlying breast tissue is cut so that the nipple gets used to being supplied by blood vessels from the surrounding skin instead. This can help reduce the risk of tissue death in the nipple when the mastectomies are done. A biopsy of the tissue under the nipple can be done at the same time as the nipple delay surgery to check that there are no cancer cells in the nipple.

How much cancer risk is left after breast mastectomies?

In theory, if all the breast tissue is removed, your risk of developing breast cancer should be eliminated. In practice, all the breast tissue that can be seen by the surgeon is removed. Unfortunately, it is not possible to remove every single breast cell, so there is still a small risk (2-5%) of developing breast cancer after risk-reducing mastectomies. As with any surgery, everyone responds differently to mastectomies.

What is involved with breast reconstruction?

Breast reconstruction is a procedure where the breast is rebuilt either using implants, tissue from another part of the body or a combination of both techniques. It is performed by a breast and/or plastic surgeon with expertise in breast reconstruction. Reconstruction after mastectomies to reduce cancer risk is not the same as having surgery to enlarge the breasts for cosmetic reasons. There are different types of reconstruction procedures available, and your preference may depend on the amount of time you have to allow for being in hospital and recovery time. Although your preference is important, the type of surgery and method used will depend on many additional factors, some of which include your weight, body shape (and whether you’re a smoker, as this affects tissue healing). Other health issues such as diabetes or auto-immune conditions can also affect tissue healing. In addition to talking to your surgeon about reconstructive options, you may also find it useful to talk to other women who have had surgery to have a realistic expectation about the procedure. Reach out to the Inherited Cancers Australia community. 

What are the different types of breast reconstruction after a mastectomy?

Aesthetic Flat Closure - also known as post-mastectomy chest wall reconstruction, can be performed right after a mastectomy (immediate) or a few months later (delayed). In this procedure, the surgeon removes any extra skin, fat, or tissue, then tightens and smooths the area to create a flat chest wall contour.

Breast implants – Involves rebuilding a breast shape by inserting a breast implant under the skin and muscle on the chest. There are two main types of implant surgery: tissue expanders and direct to implant.

• Tissue expanders – Before inserting the implant, a special bag called a ‘tissue expander,’ is inserted underneath the muscles on the chest wall at the mastectomy surgery. Over the next few weeks or months, fluid is injected into the bag about once a week to stretch the muscle and skin. When the expander bag has reached the right size, a second operation is performed to remove the bag, and the permanent implant is inserted.
• Direct to implant – This procedure involves inserting an implant at the time of the mastectomy surgery. This involves shorter hospital stays and recovery periods and scarring only in and around the breast area. However, reconstructed breasts may not be as natural looking (when unclothed) as with other types of breast reconstruction. There are possible risks and complications with breast implants and they may have to be replaced or removed if there is an infection. Breast implants are not lifetime devices.

DIEP Flap – This technique is generally preferred for tissue reconstruction. A Deep Inferior Epigastric Perforator (DIEP) flap breast reconstruction rebuilds a breast shape by moving skin and fatty tissue from the abdomen to the chest. The term ‘DIEP’ is the name of the blood vessels that provide blood supply to the tissue that is moved. You must have enough abdominal fat but also not too much. This produces the most natural looking breast. The reconstructed breast will change in size if you gain or lose weight. There is less risk of abdominal wall weakness and hernia compared to the TRAM procedure as the abdominal muscle is not used for reconstruction. A quicker recovery than the TRAM procedure is expected as the abdominal muscle remains intact.

This procedure will result in a scar across the stomach, and there is a small risk the tissue moved to the chest will not ‘take’, meaning the tissue will die and if this happens another operation will be needed. The hospital stay and recovery time will be longer than with implant-only reconstruction and you won’t be able to drive or lift heavy objects for several weeks after surgery.

TRAM Flap – Transverse Rectus Abdominis Myocutaneous (TRAM) flap breast reconstruction involves rebuilding a breast shape by moving skin, fatty tissue and part of the rectus abdominis muscles from the abdomen to the chest. The rectus abdominis muscles run from the waist to the pubic bone (and are sometimes called ‘6 pack’ muscles). This will result in natural looking breasts that will change in size if you gain or lose weight.

You can expect a scar across the stomach, possible loss of strength in stomach muscles and risk of developing a hernia. There is also a small risk the tissue moved to the chest will not ‘take’ which will require further surgery.

Latissimus Dorsi Flap – This involves rebuilding a breast shape by moving skin, fatty tissue and muscle from the back (where the LD muscles are below the shoulder blades) to the chest. Tissue expanders (which are later replaced with permanent implants) are sometimes also used to create sufficient breast size. This results in a more natural looking breast than implant-only reconstructions and will change in size if you gain or lose weight.

You will have scar on your back and possible loss of strength in your arm. There is a small risk the tissue moved to the chest will not ‘take’ which will require further surgery.

Nipple and areola reconstruction – This can be done using skin from the breast or tissue from another part of the body. The area around the nipple can be coloured to match the other breast using a tattoo. The reconstructed nipple usually does not have any feeling. Some prefer to use a nipple prosthesis, which can be attached to the reconstructed breast using a special glue.

Fat grafting – In this approach, also called ‘autologous fat transfer’, fat tissue is removed from other body parts, usually thighs, belly and buttocks, by liposuction and injected into the breast area. This procedure is relatively new, so no large studies have been done on this technique and it is not widely offered.

Reach out to the Inherited Cancers Australia community to learn about other people’s experiences in living with or without breast reconstruction.

To help with decision-making about breast reconstruction, BRECONDA is an online breast reconstruction decision aid that has been developed to help you through the decision-making process.

What is risk-reducing surgery for ovarian cancer?

For women who have a gene mutation that increases their risk of ovarian cancer, the most effective way to reduce risk is to have surgery which may involve the following:

• Oophorectomy is a surgery to remove one or both of your ovaries.
• Unilateral oophorectomy is surgery to remove one ovary.
• Bilateral oophorectomy is surgery to remove both ovaries.
• Salpingo-oophorectomy is when the surgery is extended to remove the fallopian tubes as well as the ovaries.

This kind of surgery can be used to treat several problems related to a woman's reproductive organs, including ovarian cysts, abscesses, endometriosis, ovarian cancer and prevention of ovarian and fallopian tube cancer.

Sometimes, removal of the uterus (hysterectomy) may be done at the same time. This might be considered in specific situations, for example, if you have uterine problems that are causing symptoms.

Your surgeon will be able to talk you through the different options for surgery and the potential risks and complications.

There is also an option to remove the fallopian tubes, followed by the removal of ovaries at a later time, this is called a Risk Reducing Early Salpingectomy with Delayed Oophorectomy (RRESDO)

RRESDO requires a woman to undergo two operations, which of course means meeting the potential costs of two operations, and it is important to also consider the risk of complications during both surgeries. Although the surgeries are both uncomplicated, the risk of a complication is not zero and your surgeon will discuss this with you in detail during your consultation.

Removal of the Fallopian tubes alone (salpingectomies) is not an adequate long-term cancer risk reduction treatment. If you have had your Fallopian tubes removed and have a high ovarian cancer risk (because of a family history of ovarian cancer or a mutation), you may still be advised to have your ovaries removed.

How much cancer risk is left after risk-reducing surgery?

Risk reducing bilateral salpingo-oophorectomy is the most effective way to reduce cancer risk in the ovaries and fallopian tubes to levels of less than 5%. There is no effective way to screen for ovarian or fallopian tube cancer. Risk-reducing surgery is usually recommended at around age 35 - 40 years, as risk before then is considered low.

What are the side effects from risk-reducing surgery?

Once the ovaries are removed, there is only a small amount of oestrogen still produced outside the ovaries, in other tissues. This means that you will be in menopause, but it is not possible to predict who will have symptoms and who will not. It is important to know that there are options to manage symptoms, including hormone replacement therapy (HRT).

Advice on HRT may vary with your level of breast cancer risk and history, whether you have had hormone-positive breast cancer, breast risk-reducing surgery, the type of HRT and the number of years it is used. HRT can help manage symptoms of menopause, in particular, hot flushes. Other major benefits of HRT use include protection against osteoporosis, cardiovascular disease and cognitive function. Other medications can assist with symptoms and there are specialist menopause clinics and other resources that can be accessed to support you. Talk to your GP or specialist and ask for a referral to a menopause clinic or endocrinologist for more support.

You can still have a healthy, vigorous life after risk-reducing gynaecological surgery, but it is important to know how you can deal with any side effects if they happen.

It is important to discuss this with your specialist before surgery and understand the options available to you and their impact on surgical menopause.

Please see our Resources Centre for more information on menopause.