This section is for women who have discovered that they have a significantly increased risk of developing breast cancer compared to the general population due to a very strong family history of breast cancer and/or one of the gene changes (mutations in the BRCA1 or BRCA2 genes) associated with breast cancer. One of the ways to decrease the risk of developing breast cancer might be to have a risk-reducing or prophylactic mastectomy (removal of the breast tissue). This section aims to help you to understand what risk-reducing mastectomy is, what it involves, and what options might be open to you if you decide to have this type of surgery.

What is risk-reducing breast surgery?

Bilateral risk-reducing mastectomy (also called bilateral prophylactic mastectomy) is the surgical removal of both breasts to help reduce the risk of developing breast cancer. It is therefore different from a mastectomy that is carried out as part of cancer treatment. Bilateral prophylactic mastectomy is risk-reducing surgery carried out even though there is no evidence of cancer in the breasts.

Risk-reducing mastectomy can usually be followed by breast reconstruction (the formation of new breast shapes). This can be done either during the same operation or at a later date. This is optional – not everyone who wishes to have risk-reducing mastectomy will want to have breast reconstruction.

Women with a strong family history of breast cancer and who have cancer in one breast sometimes decide to have the other breast removed to reduce the chance of getting breast cancer again. This is called contralateral mastectomy

This section is primarily about bilateral risk-reducing mastectomy, although much of it will be relevant if you are considering having contralateral mastectomy.

Why consider having risk-reducing breast surgery?

Options for women with a strong family history of breast cancer

There are several options available for women with a strong family history of breast cancer or who have inherited a genetic change that makes them more likely to develop breast cancer. These include:

Regular breast screening This involves regular breast examinations, mammographyMRI scans (a scan that uses a magnetic field to build up a picture of the breasts). A recent study found that MRI screening was almost twice as effective as mammography in detecting breast cancer in women under the age of 50 with a very strong family history of breast cancer. However, MRI screening for this purpose is not yet widely available on the NHS although such research suggests that it may be in the future. (breast x-rays) and/or

Such examinations help to find breast cancer early but they do not prevent it. Breast cancers found at an early stage are often curable. To find out more about early detection and screening, you may find it helpful to see the section on breast screening.

Taking part in trials that are looking into whether drugs (eg tamoxifen, anastrozole or raloxifene) can reduce the risk of developing breast cancer. However, some of these trials may not be suitable for all women.
Details of current trials can be found in the trials section by searching for cancer type 'breast' with 'prevention' in the text. So far, a drug that will reliably prevent breast cancer without causing too many side effects has not been found. However, research is continuing and it is certainly worth discussing with your doctors the benefits and disadvantages of taking part in such research.

Risk-reducing mastectomy – the subject of this section.

Women who might consider risk-reducing breast surgery

National UK guidance on familial breast cancer says that surgery to reduce the risk of breast cancer is only appropriate for a small proportion of women who are from high-risk families. Such surgery should be managed by a team of health professionals.

Women who may wish to consider this type of surgery include those:

with a strong family history of breast cancer (especially if the breast cancer was diagnosed among several close blood relatives on the same side of the family eg mother, sisters and before the age of 50)
who have a positive test for the BRCA1 and BRCA2 gene mutations/changes
with a personal history of breast cancer and a high risk of recurrence (eg a woman may have already had breast cancer in one breast and there may be concern about risk of cancer in the other breast)
who are at increased risk of breast cancer and also have breast microcalcifications (tiny calcium deposits) or have very dense breast tissue, which makes it difficult to detect breast cancer with mammography.

It cannot be stressed enough that the choice to have a risk-reducing mastectomy is a very personal one – there is no right or wrong decision.

Risk-reducing mastectomy and breast cancer risk

It is important to remember that not all women who are at increased risk of developing breast cancer will actually develop it. Some women who choose to have risk-reducing mastectomy may never have developed breast cancer. However, there is no way of knowing whether an individual woman will develop breast cancer or not. For some women, having mastectomy relieves their anxiety and their fear of developing breast cancer.

It is impossible for surgeons to remove every single breast cell during mastectomy and this depends to some extent on the type of mastectomy done. Usually about 90-95% of the breast tissue is removed.

A research study recently showed that bilateral risk-reducing mastectomy leads to a 90% reduction in the risk of breast cancer in women who have mutations in the BRCA1 and BRCA2 genes. Other earlier studies have shown the same. So risk-reducing (prophylactic) mastectomy significantly reduces but does not completely get rid of the risk of breast cancer.

Some experts believe that the chance of developing breast cancer after total mastectomy or skin-sparing mastectomy is actually less than 10%. This means that after having a risk-reducing mastectomy, a woman’s chance of developing breast cancer may actually be less than that of a woman in the general population.

Risk-reducing mastectomy and age

Breast cancers in women who carry breast cancer gene changes/mutations usually occur at a younger age than usual. So, in general, the younger you are when you have risk-reducing surgery, the more likely it is to prevent a breast cancer.

However, this is a very individual decision and the potential benefit of risk-reducing surgery must be balanced with other issues such as:

Whether you’ve already had children or want to have children in the future and would like to breast feed (which can be protective and reduce breast cancer risk).
What you feel the impact of getting breast cancer would be on your family responsibilities and lifestyle.
Your age. If you are a teenager, then the chance of getting breast cancer in the next 10 years is very small. If you are 70 years old with a strong family history of breast cancer, the chances are you would have developed it by now if you were going to.
As you get older, other medical conditions (eg diabetes or heart disease) are more likely to affect you, while your risk of developing a breast cancer that’s related to a genetic mutation decreases. You may find it helpful to weigh up the risk of developing breast cancer versus the risk of developing other diseases to work out what is most important for your health.

It is also important to bear in mind that the fitter you are, the less likely it is that there will be complications following surgery. Also, some methods of reconstructive surgery would not be recommended if you have certain medical conditions (eg diabetes, high blood pressure), or if you are a smoker – so this may affect your options.

When to have surgery of this type is a very personal choice; discussing the above points with your breast surgeon and breast care nurse might help you to make the decision. Your genetic counsellor or breast surgeon may also be able to give you an estimate of your chance of developing breast cancer over the next 5–10 years versus your risk of developing it over your whole lifetime, which might help you reach a decision.

What risk-reducing breast surgery involves

When considering this type of surgery, it is very important to know what is involved. To build up a complete understanding you should be able to discuss this with a breast surgeon and, if possible, with other women who have previously had risk-reducing breast surgery.

The breasts

The breasts are made up of fat; connective tissue; and glandular tissue, which contains lobes. A network of ducts connects the lobes to the nipple.

Two diagrams, one showing the lymph nodes close to the breast and the second showing the structure of the breast.

The operation

During a risk-reducing (prophylactic) mastectomy, the surgeon removes the entire breast with or without the skin and/or nipple. The lymph nodes (glands) and underlying muscles of the breast are left intact. However, it can sometimes be difficult to distinguish where the breast ends and the surrounding tissue begins. This is particularly so in the lower part of the breast and in the part of the breast that extends into the armpit (the axillary tail). This is why it cannot always be guaranteed that all the breast tissue has been removed (especially in younger thinner women where there isn’t much fat between the skin and breast tissue). So, the actual amount of breast tissue that is left behind after risk-reducing mastectomy can vary.

Bilateral risk-reducing mastectomy without reconstruction, takes about two hours. The operation takes longer if it includes breast reconstruction.

There are several different procedures used by surgeons when carrying out risk-reducing mastectomy – each woman’s case should be assessed individually and the appropriate surgical options recommended by the breast surgeon.

Types of surgery

Below are some of the different types of surgery currently used. It is important to discuss these in detail with your surgeon; the surgeon might use slightly different terms to those used here and new techniques might become available that are not mentioned.

Total mastectomy, also sometimes referred to as simple mastectomy. This involves removing as much of the breast tissue as possible. The nipple, the areola (the coloured skin around the nipple) and most of the skin covering the breast are removed. It cannot be guaranteed that all the breast tissue has been removed, but any breast tissue left after this operation should be minimal because the whole breast with its skin covering is removed.

Skin-sparing mastectomy involves removing as much of the breast tissue as possible including the nipple and the areola. The skin covering the breast is not removed, which helps maintain the shape of the breast when reconstruction is done.

Subcutaneous mastectomy involves removing as much of the breast tissue as possible usually through a cut (incision) in the fold under the breast, while leaving in place the skin, the nipple (which contains breast ducts) and the areola (the coloured skin around the nipple).

During your consultation with your surgeon, they will discuss with you the option of keeping the nipple (nipple preservation).

Nipple preservation may be an option when bilateral risk-reducing mastectomy is being considered. However, keeping the nipple and areola leaves a small amount of breast tissue behind. There is a very small risk of cancer developing in that tissue. The risks versus the benefits of keeping the nipple and areola in your situation should be discussed with your surgeon.

Questions to ask before risk-reducing breast surgery

Most breast surgeons who do this type of surgery will see you at least twice to answer your questions and discuss any anxieties. You may also have the opportunity to see photographs of patients who have already been operated on by your surgeon, or you might be able to speak to someone who has already had surgery.

You will also have the support of a clinical nurse specialist associated with the breast clinic; she will provide further information to complement that of the surgeon, to enable you to make an informed decision.

It might be useful to write down a list of questions to ask the breast surgeon before you decide what to do. Here are some suggestions:

Do you think that a particular type of surgery would be better for me? If so, why?
Where will the cuts be made and what will the scars look like?
What are the possible complications/risks of the surgery?
How long will it take for me to get over the operation?
Is there anyone who has had a risk-reducing mastectomy that I could talk to?
Can I talk to somebody about the possible emotional effects of having a risk-reducing mastectomy?
If I decide to have risk-reducing mastectomy, what is the best age to have it done?
If I decide to have surgery, how long would I have to wait to have it done?
If I decide not to have breast reconstruction, how can I best achieve my natural shape after surgery?
What type of support will be available to me after the operation? This is just as important as support offered before the operation.

If you are considering having breast reconstruction, you may want to ask further questions:

If I decide to have breast reconstruction, when would you advise me to have it done?
What type of breast reconstruction would you advise me to have?
Can you tell me about the options for nipple reconstruction?

After risk-reducing breast surgery

Recovery

Risk-reducing mastectomy is major surgery and involves a general anaesthetic. Usually a drip is put in during the operation and pain killers are initially given through the drip or by injection. When you are drinking enough to allow the drip to be removed, you will be given painkillers as tablets. The pain will gradually decrease over time.

The mastectomy wound(s) will be covered by dressings and there may be a drainage tube coming out of the wound(s) attached to a small container to collect any excess blood/body fluid. This will be removed once the drainage has slowed and the surgeon advises that this can be done. This is usually within a few days of the operation.

How long you stay in hospital, and your recovery time, depends on the type of surgery you have. The usual stay in hospital after mastectomy without reconstruction is quite short; usually 2–4 days. If you have reconstruction your stay will be longer and determined by the type of reconstruction you have.

Possible complications

All surgery has a risk of complications. Problems associated with any type of surgery include:

bleeding
problems associated with having a general anaesthetic (eg sickness)
pain and discomfort
wound infection
collection of fluid under the wound (seroma)
excessive scar tissue (hypertrophic or keloid scarring)
the formation of a blood clot in the leg (deep vein thrombosis or DVT).

You should discuss these possible complications with your surgeon and anaesthetist.

After a risk-reducing mastectomy with/without breast reconstruction, the wounds should heal completely within six weeks of surgery. However, getting back to normal can take a while; once again, it very much depends on the type of surgery you have had. Some women will have numbness or pins and needles across their chest for some time, but this is usually temporary.

Many women want to know when they can get back to doing everyday things like driving, carrying the shopping or doing the housework and gardening. This will vary, but you may need to be patient. You will need to avoid heavy physical activity until the wounds have healed and the soreness has disappeared. You are bound to feel tired, and unable to do as much as you used to, for a considerable time. It is a good idea to put alternative arrangements in place as far as you can and to be as flexible as possible.

In 2003, a study was carried out on women who had risk-reducing mastectomy. Some women in the study reported that if they had been better prepared and informed about what they would and would not be able to do after the operation, they would have organised better support at home and/or childcare.

The study concludes that more research is needed into the length of time women have discomfort after the operation. Research is also needed into how long women are unable to do such things as driving, housework, self-care etc, so that alternative arrangements can be put in place. So these are issues that you may need to think carefully about.

Driving

There are currently no specific guidelines laid down by the DVLA regarding driving after this type of surgery. So, advice about when to start driving again should be given by your surgeon. You should be able to comfortably wear a seat belt; safely do an emergency stop or move the steering wheel around suddenly if necessary; and being able to look over your shoulder and manoeuvre in and out of parking spaces. It may be helpful to sit in the car with the engine off but with the seat belt on and try to do all the manoeuvres that you would normally do when driving.

Also, you should not be taking any medication that may have a sedative effect.

Some women find that driving is possible within a few weeks of surgery (but it does depend on the type of surgery they have had) and others find that it takes longer. Some car insurance policies have specific criteria for when you can drive after surgery, so it is essential to check with your insurance company.

Breast reconstruction after risk-reducing breast surgery

What is breast reconstruction?

Breast reconstruction is an operation to replace the breast tissue that is removed during mastectomy. This can either be done by creating a breast 'form' with an implant that is placed beneath the skin and muscle that covers the chest, or by using skin and fat, with or without muscle, from another part of the body.

Sometimes a combination of these techniques is used – your breast surgeon will advise on the technique that is most suitable for you. This depends on factors such as your age, general health and body shape and, of course, your own wishes.

The goal of breast reconstruction is to try to create breasts that look and feel as natural as possible, with minimal discomfort. It is important to be aware that the sensation in the reconstructed breasts, and how they feel, will not be the same as it was originally.

To learn more about reconstructive surgery options and the risks associated with them, you can talk to your surgeon, and ask to see photographs. You can also ask for the chance to talk to someone who has had breast reconstruction after a risk-reducing mastectomy.

The more you know about breast reconstruction and the options involved, the better able you will be to make the decision that is right for you.

Advantages and disadvantages

Some possible advantages of breast reconstruction include:

improvement in body image and self esteem
no need for prostheses (false breasts) or special bra
you might choose not to wear a bra
more clothing options (eg low neckline).

Some possible disadvantages include:

the surgery takes longer and there may be more than one operation
more pain/discomfort
recovery takes longer
scars elsewhere on the body (depending on the type of reconstruction)
the risk of infection or other complications is greater.

It may be that you will not feel ready to make a decision about this just yet; don't forget, breast reconstruction can always be carried out some time later if you are not sure.

Deciding about reconstruction

It is very much your choice whether or not to have breast reconstruction and it can be done at the same time as the risk-reducing mastectomy or sometime later if you prefer.

Some women who decide to have risk-reducing surgery do not want to have breast reconstruction. They might prefer to wear breast forms or prostheses (false breasts) that are held in place by a special bra.

Finding a surgeon for breast reconstruction - after risk-reducing mastectomy

If you are considering risk-reducing mastectomy with reconstruction, you are most likely to be referred straight away to a breast surgeon with expertise in this type of surgery. There are not many surgeons who carry out breast reconstruction operations in the UK. In some hospitals you may have a breast surgeon to do the mastectomy and a plastic reconstructive surgeon who is skilled in a particular type of reconstruction. If you are considering risk-reducing mastectomy, they usually work as part of a team that can look after you from start to finish; helping you make decisions and supporting you along whatever path you decide to take.

You may have been referred to the surgeon directly by your GP or by a genetics unit. The team to support and take you through your options may consist of some or all of the following:

clinical geneticist/genetic counsellor
psychologist
surgeon(s)
clinical nurse specialist associated with the breast clinic.

The clinical nurse specialist works with the whole team to give you full support before, during and after the surgery if you decide to go ahead.

Questions to ask your surgeon

What types of reconstruction would be suitable for me and how are they done?
What are the different types of implants used?
Is there a particular approach that you would recommend for me and why?
What are the chances of my needing a blood transfusion? If this becomes necessary, can I give my own blood?
What are the risks/complications of the different types of surgery and what are the chances of them happening?
What are my options regarding nipple reconstruction?
Can I choose the reconstruction size?
Are there any before and after pictures that I can see?
What will the scars look like?
How long will the operation take?
How long will I be in hospital?
How long will it take before I can go back to normal ‘everyday’ activity?
How will the breast feel to touch?
Will the sensation in my breasts change after reconstruction?
Will I still need to have breast screening?
How long would I have to wait before I could have the surgery done?
Is this available on the NHS?

You may find the answers to some of these questions on the following pages, but it is still advisable to check them with your surgeon as there may be slight differences. There is a list of common questions and answers in this section that answer some of these questions.

Types of breast reconstruction - after risk-reducing mastectomy

Listed below are some of the types of surgery that can be used for breast reconstruction. These are explained more fully in the following pages:

* Breast reconstruction using an implant only. The implant is placed under the chest wall muscle.

* Using a flap of muscle, fat and skin from the back with or without an implant to supplement it. The muscle in the back that is used is called the latissimus dorsi. The flap (known as the LD flap) is tunnelled through the side of the chest to create the reconstructed breast but it stays connected to its original site at one end so that it keeps its blood supply. This is known as a pedicled LD flap.

* Using a flap of muscle, fat and skin from the abdomen. Usually an implant is not needed to supplement reconstruction using this type of flap. The muscle in the abdomen that is used is called the transverse rectus abdominis. The flap (known as the TRAM flap) is tunnelled upwards from the abdomen beneath the skin, staying connected at one end for the blood supply. This is known as a pedicled TRAM flap.

* Using a TRAM flap as above but as a free flap as opposed to a pedicled flap. This means that the blood supply is cut and a new blood supply is created at the area of the breast. This is known as a free TRAM flap.

* Using a TRAM flap where a flap of skin and fat only (no muscle) is taken from above the transverse rectus abdominis muscle with a branch of the main blood vessel for its blood supply. This is known as a free perforator TRAM flap or a free DIEP flap (because the blood vessels used are the Deep Inferior Epigastric vessels). Other types of perforator flaps (taken from other areas of the body) are mentioned later in the section on free perforator flaps.

Breast reconstruction using implants - after risk-reducing mastectomy

Under the muscle (submuscular)

In this type of breast reconstruction you have a skin-sparing mastectomy and at the same time an implant is positioned underneath the muscles covering the chest. This type of reconstruction is usually only possible if you are having relatively small breasts reconstructed. You can discuss with your surgeon whether the nipple can be preserved. Otherwise you may consider nipple reconstruction or using false (prosthetic) nipples.

The scar from this type of operation is usually side-to-side or at an angle following the line of the original mastectomy scar.

Reconstruction of both breasts using implants (with nipple reconstruction). (Photo supplied by Mr Mike Dixon).

Putting in the implants at the same time as the mastectomy, as in this method, gives breasts without the normal droop. You can even choose to go without a bra! The implant is under the muscle so it tends not to be obvious and is not easy to feel. Because of this, the breasts tend to be firmer and the implant can sometimes change shape slightly when you move, as the overlying muscle contracts. It is therefore not always possible to produce a natural breast shape using this method in older women or in women with large breasts. Your surgeon will advise you about this.

Current breast implants usually last about 10–15 years, although they are likely to last longer. It is important to report any change in shape which may be a sign of leakage or rupture.

Under the muscle, using tissue expansion

Breast reconstruction involving tissue expansion can give very good results, and avoids the need for the more extensive surgery used in tissue flaps. However, it takes longer to complete than other methods, and some women find this a limitation.

This method uses the ability of your skin and muscle to stretch. Skin is surprisingly elastic in most people and a natural breast shape can usually be achieved in this way.

How it is done

Tissue expanders (like hollow, empty balloons) are put behind the muscles of the chest behind the breast. They are gradually expanded over a few months with regular injections of sterile salt solution (saline). This is done through a valve put just under the skin at the edge of the new breast shape near the armpit. The injections are usually done in the outpatients department. You may feel a pressure sensation during this procedure, but most women find that it is not too uncomfortable.

Reconstruction using issue expansion can be one- or two-stage:

In one-stage surgery, tissue expanders that act as implants are used. The tissue expander is part saline (salt water) and part silicone; typically the expander/implant consists of one-third to one-quarter silicone and the rest saline. There is an inflatable inner chamber that can be filled with saline over a period of several weeks to allow for the implant to be adjusted for size. This can be done through a valve (port) that is attached to the implant that will self-seal once the desired breast shape and size is achieved. Such an implant then stays in place and the port and tubing connecting it are removed.

In two-stage surgery, the saline expanders are inflated until the size is slightly larger than desired. They are then left for several months to allow the skin and muscle stretching to settle. The tissue expanders are removed at a second operation and permanent implants, that are slightly smaller in size than the tissue expanders, are put in. The slight over-expansion allows the implant to lie on the chest wall with a more natural appearance.

Reconstruction of both breasts with expander implants and nipple reconstructions. (Photo supplied by Mr Mike Dixon).

With this type of breast reconstruction there will be a long scar (but this should not be any different from the original mastectomy scar). There is also the need for several procedures before it is complete; several visits are needed to have the tissue expanders inflated. Also, the breasts will be relatively small until the expander has been inflated a few times. The reconstructed breasts will always be firmer than natural breasts and have little or no droop.

After complete healing from the above stages, a further procedure can be done if necessary, to create a nipple. This involves creating a nipple from skin over the implant. An area can then be tattooed around this to make a more natural looking nipple and areola (the area of darker skin around the nipple).

Alternatively, you could consider using stick-on nipples made of silicone (known as prosthetic nipples). These can be attached to the reconstructed breast using a special glue. More about options for nipple reconstruction and tattooing later in this section.

Materials used in breast implants for reconstruction - after risk-reducing mastectomy

Breast implants are smooth or textured silicone bags that can be round (dome shaped) or breast shaped (biodimensional or anatomic). They can be filled with saline (salt water) and/or silicone gel. Implants are often referred to as prostheses. Silicone is used in many other medical implants, including pacemakers and joint replacements, as well as products such as antacids and preservatives. Research into the use of different materials to make implants is always ongoing.

Saline

All tissue expanders are filled with saline. The saline used to fill implants is like the fluid that makes up 70% of the human body. In the rare event that the implant should leak and the saline is released, the body can safely absorb it without causing any problems.

However, saline-filled implants may not have quite such a natural feel as silicone-filled implants and so they give a less realistic reconstructed breast. They are also more likely to leak and deflate. Saline-filled breast implants may be more likely to wrinkle or ripple, particularly in thinner women.

Silicone

Silicone implants are very commonly used in the UK. The silicone gel filling gives a more natural feel to the reconstructed breast.

Silicone gel can be semi-liquid or of a firmer type called cohesive gel. Most of the newer implants are made using the firm (cohesive) gel. The more solid, jelly-like gel remains contained if the shell ruptures. Soft implants are filled with the more fluid-like gel; this is the softest implant available and is less prone to wrinkling. It feels more natural than some other types of implants.

There have been some concerns about possible health risks if silicone leaks from the implant. If a silicone implant ruptures, this means that silicone will leak through its shell, but this usually stays in the area around the implant. However, most surgeons recommend that a ruptured implant is removed.

Implant rupture is different from implant bleeding. Implant bleeding is where there is a leakage of a small amount of silicone through the implant shell, which then can leak around the implant. Leakage of a small amount of silicone rarely causes problems and, unless the leakage is significant, needs no action. If the leakage is significant, your surgeon may recommend further surgery.

Are silicone implants safe?

Over the years there have been concerns that silicone implants can cause some illnesses/symptoms and even cancer. Women have reported symptoms such as muscle spasms and pain, swollen and painful joints, rashes, changed eye and saliva fluid and hair loss after having silicone implants.

However, the problems that have been reported tended to be associated with liquid silicone injections, where the silicone was injected directly into the breast, as opposed to silicone implants. In an implant, the silicone is contained within the fibrous capsule that the body develops around the implant.

In response to these concerns, the Department of Health set up the Independent Review Group (IRG) to review the safety of silicone gel filled breast implants and their report was published in 1998. Copies can be obtained from their website at www.silicone-review.gov.uk or by calling 020 7972 8077.

The Independent Review Group’s (IRG’s) report states ‘the IRG found no scientific relationship between silicone gel implants and immune reactions. No relationship was shown between silicone gel implants and long-term systemic illness (affecting the whole body), nor with specific connective tissue disease or non-specific systemic illness.’

It is now also required that all women having 'cosmetic' surgery should be able to get free, full information about the benefits and risks. The Department of Health has produced a patient information leaflet called Breast Implants: Information for Women Considering Breast Implants, which is based on the recommendations of the Independent Review Group. Although this is not written specifically for women considering risk-reducing surgery (it is written more from the cosmetic surgery point of view), the principles discussed in the leaflet are helpful.

There is also now a UK Breast Implant Registry that records all breast implant operations and any side effects are reported. If any problems occur with one type of implant, all the women who have these specific implants can be contacted and prompt action taken.

It is important to talk through any concerns you have with your surgeon, breast care nurse, or cancer support organisation before you have an implant. If you think you would prefer to have an implant containing saline, then you can talk to your surgeon about this.

Breast reconstruction using tissue flaps - after risk-reducing mastectomy

This type of breast reconstruction uses flaps of skin, fat and sometimes muscle. These are generally taken from the back or abdomen because these areas of the body can provide enough skin, fat and muscle with a good blood supply to create the shape of a breast on the chest wall.

Flaps are either:

tunnelled to the breast area under the skin, allowing them to remain attached to their original site and retain their blood supply (known as pedicled flaps), or

surgically removed, disconnected from their blood supply and moved to the breast area (known as free flaps). With a free flap, microsurgery is needed to re-attach blood vessels to create a blood supply for the newly formed breast. If the free flap consists of skin and fat only, without any muscle, it is known as a free perforator flap. A branch of the main blood vessel, after it has left the muscle situated below the skin and fat, is used to create the blood supply for the newly formed breast.

Any type of breast reconstruction using muscle, fat and skin flaps is a major operation taking at least 6–8 hours to perform and needing a hospital stay of around a week or more.

Breast reconstruction using pedicled flaps - after risk-reducing mastectomy

A large muscle from the back called the latissimus dorsi muscle, or a muscle from the abdomen, the rectus abdominis muscle, are the most commonly used muscles for pedicled flap reconstruction.

Using the muscle and skin from the back

This type of operation involves moving a flap of fat and overlying skin from the back of your body. The skin and underlying fat stays connected to the muscle in your back, and together with its own blood supply, the flap is tunnelled under the skin just below the armpit. The blood vessels of the flap stay attached to the body at the end nearest the armpit. The flap is positioned to create a new breast shape. If there is not enough tissue to create the whole breast form with the flap alone, an implant can be put behind it to give the desired size and shape. As the latissimus dorsi muscle is used, the operation is often referred to as the latissimus dorsi flap (LD flap).

This operation may leave some residual shoulder weakness as part of the muscle in the upper back is removed. Physiotherapy will help to build up the surrounding muscles but the shoulder may always remain slightly weak. This is obviously an important consideration if you are a keen player of any sport that involves the shoulder muscles.

This type of operation leaves scars where the skin and muscle flap is taken from the back, and also on the reconstructed breast. The scar around the reconstructed breast is oval-shaped. If a subcutaneous mastectomy has been done, the mastectomy scar may be under the breast fold. The nipple may or may not be preserved. If it is not preserved, the surgery may be planned so that the new reconstructed nipple, and tattooing afterwards, can mask the scar.

Front and back view two months after skin-sparing prophylactic mastectomies using a latissimus dorsi flap (without nipple reconstruction). (Photos supplied by Mr Gerald Gui)

The scar on the back is usually horizontal, so a bra strap will generally cover it. Sometimes this scar is more diagonal. This can make it more difficult to cover with a bra, but can be covered by a swimsuit. You can discuss with your surgeon which type of scar you will have; a diagonal scar gives more skin for reconstruction.

This type of reconstruction generally has few problems and can recreate a small or moderate breast size very well.

Skin-sparing bilateral prophylactic mastectomies using a latissimus dorsi flap and nipple reconstruction (with tattooing). (Photo supplied by Mr Gerald Gui)

Using the muscle and skin from the abdomen

In this operation a flap of fat and some muscle, with its overlying skin, is taken from the abdomen. It is then rotated (with its blood supply from the abdominal muscle), tunnelled upwards from the abdomen and placed on the chest wall to create the shape of a breast. This technique usually gives enough tissue to create a good-sized breast, so an implant is rarely needed to supplement it. It is, however, major surgery involving a long operation with a hospital stay of around one week, and with perhaps more pain and discomfort initially.

This type of operation is sometimes referred to as a TRAM flap because the Transverse Rectus Abdominis Muscle is used.

The scar on the abdomen is usually horizontal and just below the bikini line. During the operation the tummy button (umbilicus) is repositioned. The scar around the breast will be oval.

TRAM reconstruction of the left breast with nipple reconstruction. Over time the abdominal scar fades to a pale white line. (Photo supplied by Mr Mike Dixon).

Benefits and disadvantages

Breast reconstruction using muscle, fat and skin flap rotation, from the back or abdomen, is major surgery and needs a hospital stay of at least one week.

Using a flap from the back generally gives less risk of complications than using a flap from the abdomen, but an implant is often needed.

Pedicled TRAM flap surgery is complex and complications can occur. It can only be used for women who are slim and who do not smoke. TRAM flaps can have blood supply problems, leading to the tissue at the edge of the flap, or sometimes all of the flap tissue, to die. Also, after the muscle of the abdominal wall has been removed as part of the operation, it is necessary to use a mesh to strengthen the muscles to prevent hernias or bulges.

Breast reconstruction using free-flaps - after risk-reducing mastectomy

In free-flap reconstruction techniques, areas of fat and skin, with or without muscle, from one part of the body are moved to another. The blood vessels supplying the flap are cut and then reconnected to the blood vessels in the armpit or under the breast bone so a new blood supply is created. These techniques involve using microsurgery (joining arteries and veins that are only 2–3mm in diameter, using an operating microscope).

This is specialised surgery and is carried out by surgeons who are experienced in these procedures. Even surgeons who carry out microsurgery may specialise in only one or two microsurgery techniques.

Free TRAM flap

This uses the same skin and fat from the lower abdomen as the pedicled TRAM flap, but less muscle is taken. Once the blood vessels are joined up, the blood supply tends to be better than the pedicled TRAM flap. It is possible to reconstruct a larger breast using this technique and the appearance is usually very good. However, some muscle is still taken from the abdominal wall and it is still necessary to repair it with mesh to prevent hernias and bulges.

Both breasts have been reconstructed using free TRAM flap and nipple reconstruction. (Photo supplied by Mr Mark Dixon).

This is a bigger operation with a greater risk of complications and a longer recovery time. The operation usually takes at least 6–8 hours and because a part of the rectus abdominis muscle is used, there is a risk of abdominal hernia in up to 11 out of every 100 women who have this type of reconstruction).

The main complication of this operation is that the flap of tissue will not get enough blood supply and all or some of it will die; this occurs in up to 5–10 out of every 100 women who have this type of surgery. When flaps fail (totally or partially), there will be a need for long-term dressings until it heals completely. Your surgeon will then advise you about your options.

As with the pedicled flap, it may not be a suitable operation for women who are diabetic, heavy smokers or very overweight. It may also not be suitable for women who have had certain types of abdominal surgery previously.

Free perforator flaps

Free perforator flaps are flaps of skin and fat with an attached artery and vein for blood supply. No muscle is taken so, if the flap is taken from the abdomen, there is much less chance of weakness or hernia, and a mesh (as described previously) does not need to be used. Free perforator flaps take 6–8 hours or more to do and need a hospital stay of about a week or longer. It may not be a suitable operation for women who are diabetic, heavy smokers, very overweight or who have had previous abdominal surgery.

As described above (in relation to the free TRAM flap), there is a chance that the tissue in the area may die if the blood supply to the new breast is not good enough. This occurs in 5–10 out of every 100 women who have this procedure. Even when performed by experienced surgeons some of the flap or the whole flap may die. Long-term dressings may be needed until the area has completely healed. Your surgeon will then advise you about your options.

There are several types of perforator flaps and they are named after the blood vessels used. The most common flaps that are taken from the abdomen are the free DIEP flap (Deep Inferior Epigastric Perforator Flap) and the free SIEA flap (Superficial Inferior Epigastric Artery Flap) as described below.

Free DIEP flap and free SIEA flap

In these procedures skin and fat is taken from the lower abdomen but without any muscle. The muscle through which the blood vessels come is left in the abdomen. The tiny blood vessels that keep the skin and fat alive are very carefully cut out as far as the larger artery and vein in the groin (the deep or the superficial inferior epigastric perforators). The flap of skin and fat is then moved to the chest and the blood vessels joined to blood vessels of the same size in the armpit or chest wall.

The appearance of the new breast is usually very good and feels very natural. The risk of hernias or bulges in the abdomen is almost completely removed because no muscle is taken, so a mesh does not need to be used.

The main advantage of this type of flap is that no muscle is removed and so recovery is quicker than with the TRAM flap and there should be no abdominal weakness. However, it is a more complicated operation and needs to be done by an experienced surgeon. There is also a greater risk that all or part of the flap will die than with a simple free TRAM flap.

Other free perforator flaps

There are several other free perforator flaps that can be considered. These include the free SGAP flap (Superior Gluteal Artery Perforator flap) and the free IGAP flap (Inferior Gluteal Artery Perforator flap) as described below.

At the time of writing, in the UK these types of reconstruction are less commonly carried out than the other types described earlier in this section. Your surgeon will help you to decide what type of operation would suit you best.

Free SGAP flap and free IGAP flap Here fat and skin is taken from the upper or lower buttock to create a new breast. The breast produced from the IGAP flap is softer than the one from the SGAP flap. Also with the IGAP flap, larger breast sizes may be created, and the scar is in the buttock crease and so it is easily hidden by underwear. For these reasons, the IGAP flap may become the most common flap from the buttock area in the future. It is generally used when tissue from the abdomen cannot be used due to scarring from previous surgical procedures, or because the patient is too slim.

In rare cases, it may be possible to take free perforator flaps from other places, where there is enough fat and a suitable blood supply.

Reconstructing the nipple after breast reconstruction - after risk-reducing mastectomy

Preserving the nipple

If you are having removal of the breast with immediate reconstruction for risk-reduction purposes, it may be possible to preserve the nipple. There are two options for keeping your own nipple.

The nipple can be left attached to the skin of the breast with just the tissues underneath the skin being removed.
The nipple and its surrounding skin is removed with the rest of the breast tissue and then attached (grafted) onto the reconstructed breast.

It will not be possible to preserve the nipple if there is any possibility that it may contain cancer cells; you can discuss this with your surgeon who can advise you what your options are.

Reconstructing the nipple

If it has been decided to remove the nipple during the mastectomy procedure and it is not possible to graft the nipple onto the breast during immediate reconstruction, it is usually possible to have a nipple made later. This is usually done some time (perhaps a few months) after the breast reconstruction has healed and settled into its final shape and position.

An important point to note is that reconstructed nipples have no sensation.

Techniques used

Various techniques may be used for nipple reconstruction:

Local skin flap Surgery using a local skin flap creates a nipple shape on the breast. Six to eight weeks later, the nipple and areola (the coloured area of skin around the nipple) are tattooed to give the right colour. More details about tattooing are on the opposite page.

Skin graft More rarely, the nipple and areola are reconstructed from grafted skin tissue taken from other suitable areas of your body, such as the skin at the top of the inner thigh or behind the earlobe, where the skin tends to be a darker colour.

While the reconstructed nipple can improve the appearance of your breast, it is important to note that it will not behave in the same way (eg in response to temperature changes) or have the same sensation as a natural nipple.

Alternatives to nipple reconstruction

Silicone stick-on nipples (nipple prostheses)

You may decide that you do not want to have another operation to create a nipple. In this case you could consider nipple prostheses or silicone stick-on nipples, which can be attached to the reconstructed breasts using a special glue. These can be bought ready-made or can be custom made or can be an exact mould of the original nipple and areola. They are usually made in the moulding room at the hospital.

A selection of nipple prostheses. (Photo supplied by Mr John Buckle).

Nipple tattooing

If a local skin flap has been used to create a nipple, tattooing may be used to give the right colour. If the shape of the nipple has not been created with surgery, a tattooing technique can be used to get the effect of a nipple and areola on the breast; this technique will not give the three-dimensional shape of a nipple but it can give a very good appearance. Silicone stick-on nipples can also be used for times when the shape of a nipple is required (eg when wearing a swimming costume).

Nipple tattooing is usually done under local anaesthetic, either using a local anaesthetic cream or an injection. The procedure usually takes 30–40 minutes. A semi-permanent pigment is injected under sterile conditions. The exact colour will depend on your skin colour and the amount injected will vary slightly from person to person to give the best appearance. Usually the tattooing procedure needs to be repeated to give the best result.

The tattooing itself is not usually painful but the area may feel sore (like a graze) for a few days afterwards. You will probably be advised to wear a dressing over the area afterwards for about a week. This may need to be changed in case the dye leaks through the dressing.

Recovery after breast reconstruction - after risk-reducing mastectomy

Immediately after

Immediately after the operation you will have dressings on your reconstructed breast(s) and on the areas from where the flap has been taken (if you have had surgery that involves this). You will also have small drainage tubes leading out of the wounds and attached to small containers to collect any excess blood/fluid. Wearing a nightdress/pyjamas that fasten at the front is a good idea until the drainage tubes/drip have been removed. The drainage tubes will be removed once the drainage has slowed and the surgeon advises that this can be done (2–5 days). Removal of the tubes can be a little uncomfortable, but you will feel a lot more comfortable once they are taken out.

You will need to wear surgical stockings (thick, white elastic stockings) before and after the surgery, until you are able to move around normally again. This is to prevent blood clots forming in your legs. You may find it more comfortable to wear a nightdress, rather than pyjamas, with the stockings.

An antibiotic is often prescribed to lower the chance of infection while the drainage tubes are in place.

You will probably feel quite sore after breast reconstruction; this is mainly because muscles have been moved. You will be given painkillers; it is important to tell the staff if you are in pain – pain can usually be well controlled and it will decrease as time passes.

Advice about baths and showers after breast reconstruction varies depending on your surgeon so it is better to discuss this after surgery with your surgeon and breast care nurse. General advice is:

to have showers rather than soak in a bath
to wash with lukewarm water and unperfumed soap, rinsing the wound line well
not to use anti-perspirants, perfumes or any product that contains alcohol in the area
to pat the wound dry with a towel – not to rub it.

Your recovery time will depend on the type of surgery you have had and your general well-being, and so will your length of hospital stay, which could be as long as 7–10 days.

Massaging the skin

Once the scars have healed, surgeons generally advise that women should massage the skin over the reconstructed breast daily with body oil or cream. Your breast care nurse will advise you about what sort of oil or cream to use. This keeps the skin supple and in good condition. The massaging action may also reduce the risk of capsular contraction (formation of a tough, fibrous coat) around an implant.

Wearing a bra

Some surgeons advise women to wear a support garment, usually a firm, supportive bra, for several weeks after certain types of reconstructive surgery. They may recommend wearing this at night as well as during the day. Other surgeons consider this is unnecessary and suggest wearing a normal bra, or no bra at all. It is important to discuss this with your surgeon.

Arm movement

Immediately after surgery, a physiotherapist will show you how to do suitable arm exercises. You will probably be given different exercises to do before and after having the drainage tubes removed. It is very important to do these to get your arm moving as well as possible. It may take several weeks or longer after reconstruction before you can fully move your arms without discomfort. The recommended exercises will be increased as you recover. Again, these will depend on the type of surgery you have had. Washing, especially your hair, won't be very easy at first, so you may need to have help from a relative or friend.

Possible complications after breast reconstruction - after risk-reducing mastectomy

Reconstructive surgery is now more common than it used to be, so techniques and implants are improving all the time, and the risks of complications are reducing. However, there are still some risks connected with any type of surgery and a few connected particularly with breast reconstruction. Being prepared for these possible problems will help you cope with them if they occur.

Pain and discomfort

This will often be discussed in detail by your anaesthetist. After any type of operation you are likely to feel some pain and discomfort. Women vary greatly in how much pain they have after breast reconstruction. Many women will need to take painkillers for a few weeks or so after surgery. Make sure you ask for pain-relieving drugs if you need them. There is no need to suffer in silence – in fact, research suggests that patients with good pain relief recover more quickly after surgery. Other methods such as acupuncture or massage may help to reduce pain. You can ask your breast care nurse about this.

You may find it uncomfortable to move your arm initially after surgery, particularly if you have had reconstruction at the same time. It is important to continue to take painkillers so that you can use your arm and carry out the exercises suggested by the physiotherapist.

Wound infection

This can be a complication of any type of surgery. You may be given a course of antibiotics after your operation. If not, and infection occurs, antibiotics can usually quickly get rid of infection. In a very few cases, infection continues despite antibiotics. If an implant has been used it may have to be removed in order to treat the infection successfully. In this situation, doctors generally advise waiting for a few months before having another implant inserted, or having a different type of reconstruction.

It is important to check your scars (incision lines) regularly once you are back home after surgery. Tell your breast care nurse or doctor immediately if you have any of the following:

increased redness or a change in colour over the breast, around the scar area, or both
discharge (fluid being released) from the wound
a fever, with your temperature going above 38°C.

Collection of fluid under the wound

After breast reconstructive surgery, you will have drainage tubes inserted into the wound to drain away any fluid that may collect. These are long thin plastic tubes attached to vacuum drainage bottles. They are usually removed several days after your operation. However, after removal of the drains, a collection of fluid (a seroma), or blood (a haematoma), can sometimes develop under the wound. The body may absorb these if they are small, but if they are large, they will need to be removed by a surgeon or nurse, using a small needle and syringe (aspiration). This fluid may continue to build up over a few weeks under the back wound, if you have had an LD flap, and may need regular aspiration.

Tissue failure

If reconstruction is done using flaps of fat, skin and possibly muscle, there is a small chance that the blood supply to part of the flap or all of it, will not survive. Without an adequate blood supply, the flap or part of it will die. You may need another operation in this situation, either to remove the affected area or to try to improve the blood supply. You may also need long-term dressings until the area has healed. Your surgeon would then talk to you about other options for reconstruction.

This complication is more common with TRAM flaps or free perforator flaps and is rare after an LD flap.

Itching

This is a sensation that often accompanies wound healing, so you may feel this where incisions have been made. This may be very uncomfortable, but it is important not to scratch the healing skin. The itching will decrease as the wound heals.

Possible longer-term problems after breast reconstruction - after risk-reducing mastectomy

Capsular contracture

When any foreign body, such as an implant, is put into your body, your immune system responds by forming fibrous tissue around it. Over a few months this fibrous tissue will contract as part of the natural healing process. This is known as capsular contracture. If this contraction is severe, you may have tightening, hardening and changes in the shape of the reconstructed breasts, which may be uncomfortable. About 10–20 out of every 100 women will develop this problem, although recent improvements in implant design have reduced the risk. Some capsular contractions form in the early years, but others may form many years after the surgery.

In a few cases the implant and the capsule may need to be surgically removed; a replacement implant is then inserted at the same time.

Other complications

Abdominal hernia is a complication that can occur after a pedicled or free TRAM flap. This is due to removal of the abdominal muscle, which weakens the abdominal wall. Even if your surgeon has inserted a protective mesh to replace the muscle and try to prevent this happening, a hernia can sometimes develop.

Using a flap from your back (latissimus dorsi) may reduce your shoulder movement, because of loss of muscle. This can sometimes make it difficult to do everyday activities like getting in and out of the bath, or can affect your ability to do some sporting activities, such as tennis, skiing, climbing etc.

Common questions on breast reconstruction - after risk-reducing mastectomy

What does a reconstructed breast look like?

A reconstructed breast will not look exactly the same as a natural breast, but differences should not be noticeable when you are wearing clothes. The new breasts may look flatter or more youthful than your natural breasts.

Does a reconstructed breast with implants feel different?

Breast implants are designed to feel like a natural breast, being soft and pliable. They are similar in weight and density to breast tissue. Implants may move slightly, so the breasts may have some 'bounce'. They can also feel cold in the winter.

The skin over your reconstructed breasts will feel normal when you touch it because it is your own skin. However, sensation in the breast is usually very different from before and the breasts may feel numb or overly sensitive

What if I am not happy with the results?

Your satisfaction with breast reconstruction will depend mainly on what you expect before the surgery. Make sure you discuss your expectations with your surgeon before you decide to go ahead. It is important to wait for several months for the skin and muscle to stretch, and for the reconstructed breasts to settle into their final shape, before deciding how happy you are with the result. If you then have concerns, you can discuss them with your surgeon or breast care nurse.

Could a breast implant hide a cancer?

A breast implant used in a risk-reducing mastectomy will not hide a cancer and neither will a flap. You should check your new breast from time to time and report any lumps or changes to your breast surgeon.

Do implants cause cancer?

Long-term medical research shows there is no evidence that they cause cancer.

Will I get swelling in the arms after bilateral risk-reducing mastectomy?

When a woman has a mastectomy because cancer is present, the lymph glands under the arm (in the armpit/axilla) are removed in case the cancer has spread there. As a result of the removal of these, swelling in the arm and hand may happen. However, risk-reducing or prophylactic mastectomy involves the removal of healthy tissue only, so there is no need to remove the lymph glands. Therefore swelling of the arm or hand is very unlikely.

Making your decision about risk-reducing breast surgery

As you can see, the decision whether or not to have risk-reducing breast surgery is not an easy one. You will need lots of time and discussions to help you make up your mind. You may need to call upon the expertise of many health care professionals. The breast unit at the hospital that you attend should have a written procedure (protocol) for the care and support of women considering this type of surgery. If a protocol is not obviously available in your hospital, don’t be afraid to ask to see it to help you make a fully informed decision.

Women have different attitudes to this type of operation, and you may find this if you talk about it to your family and friends. Some women feel that risk-reducing mastectomy is a very extreme course of action and they know that they would never have it done. Others feel drawn to the idea immediately, particularly if they are very anxious about getting breast cancer. It may take a long time to weigh up the pros and cons to work out how you personally feel.

You may find it particularly helpful to hear about the experiences of other women who are, or have been, in the same situation as you. Your hospital team may well be able to put you in touch with someone willing to share their experiences. However, it is important to remember that everyone’s 'journey' through this will be different as it depends on a whole host of factors, many of which we have tried to explore in this section.

There is no right or wrong way - it is very important to do what feels right for you and to take as much time as you need to make your decision

References

The information in the risk-reducing breast surgery section is based on the Cancerbackup booklet, Understanding risk-reducing breast surgery. This booklet has been produced in accordance with the following sources and guidelines:

Screening with magnetic resonance imaging and mammography of a UK population at high familial risk of breast cancer: a prospective multi-centre cohort study (MARIBS). The Lancet 2005; 365:1769-78. May 21, 2005
Understanding NICE guidance – information for women at risk of familial breast cancer, their families and the public. May 2004. www.nice.org.uk
Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE Study Group. Rebbeck T et al. Journal of Clinical Oncology 2004; 22: 1055-62
Efficacy of Bilateral Prophylactic Mastectomy in Women with a Family History of Breast Cancer. Lynn C. Hartman Mayo Clinic, Rochester, Minnesota. New England Journal of Medicine 1999; 340:77-84
Abdominal wall complications: prevention and treatment. Reece GP, Kroll SS. Clinical Plastic Surgery 1998; 25:235-49
Late results of breast reconstruction with free TRAM flaps: a prospective multicentric study. Banic A et al. Plastic Reconstructive Surgery 1995; 95:1195-204
A qualitative study looking at the psychosocial implications of bilateral prophylactic mastectomy. Bebbington Hatcher M, Fallowfield LJ. The Breast 2003; 12:1-9

Risk-reducing breast surgery - prophylactic mastectomy