By C

My story is only one account of how someone at high risk of developing breast cancer might come to the decision to have risk-reducing surgery; testing for the BRCA genes was not possible for me but advances are being made all the time, probably helping the decision-making. However this account describes a process which would have much in common with anyone in a similar position.

I grew up in a family where people develop and do not survive breast cancer so I have always considered myself as having the disease but in an inactive form. This family history has deprived me of at least 3 generations of close family of both sexes: a grandmother and a mother, aunts and cousins. So awareness and fear of the disease have always been present and I have tried to ensure that I have done everything possible to avoid the disease myself first through Family History screening clinics referred by my GP, with regular mammograms as I got older.

Recent medical advances particularly in the field of genetics allowed me to then opt for Risk-reducing surgery which has recently meant bi-lateral mastectomies: removal of as much breast tissue as possible together with the nipple/areolar area as this was where my mother and godfather first showed disease.

Although the question of reconstruction is a very individual one, I felt strongly that I would want immediate reconstruction and although my options were limited, being small and thin, I accepted initially permanent Becker expander implants due to the urgency of the operation: my breasts were both showing symptoms of possible disease.

When I was first offered an opportunity to discuss my family history with a Geneticist, it became quickly clear that with no survivors, testing for a possible gene mutation would not be possible. We obtained all the necessary documentary evidence to put together a family tree based on incidence of breast cancer and I was classified as High-risk with no known gene involvement. I was offered risk-reducing surgery, the start of a long process designed to ensure that patient expectation in terms of outcome is realistic: first the actual mastectomy is usually straightforward but it is impossible to remove all the breast tissue, 90 - 95% is the norm; so the risk is not entirely removed.

Also reconstruction is just that: whatever option is suitable it does not restore your own breasts but it can provide an acceptable replacement if you wish it; there can be complications but the protocols to be gone through before surgery ensure that women should be well-prepared psychologically. These include sessions over a period of time with a multi-disciplinary team which in my case included a breast oncologist who performed my surgery, breast care nurses, a plastic surgeon and a psycho-oncology nurse who discussed with me my feelings around cancer. I was surprised at the time that we did not talk about the loss of my breasts but as time went on, I realised that I had been far more afraid of cancer than the mastectomies but I certainly expected an immediate reconstruction to help my adjustment...waking up flat-chested was not something I could cope with as I had uncomfortable memories of my mother's experience.

This process takes some months at least because the decision-making is so individual: in my case it was about 2 years from Genetics clinic to surgery...and even so in the end we had to hurry things because my breasts had developed worrying symptoms. Prior to this I had been taking my time discussing the reconstruction with my surgeon who considered my ptotic (droopy) breasts and thin skin difficult for implant reconstruction and he sent me to see a colleague plastic surgeon who offered me Latissimus Dorsi flaps, using the large back muscle tunnelled under the arm to form a breast shape. I declined this as the procedure's complications include possible nerve pain and I already had shoulder problems. I felt I wanted implants but due to the surgeon's reservations, I decided to seek a second opinion from another plastic surgeon who specialised in autologous flaps, that is using the patient's own bodyfat and/or muscle.

The opinion I received was the one we chose as we were in a hurry: semi-skin-sparing mastectomy with nipple removal using a transverse central incision which allows good blood flow to the wound with Becker expanders placed behind the pectoral muscle. In the end this was achieved successfully and with no immediate complications. Implant reconstruction can have very good results for suitable patients and is certainly a fairly straightforward procedure but it has its own limitations: the implants have a life span of 10 -15 years and a percentage of women do have contracture where the usual capsule of scar tissue round the implant tightens and causes pain and hardness. In both these cases, replacement will be necessary.

I am pleased with my result but am aware of these shortcomings. My surgeon and I decided that I would return to the plastic surgeon to discuss a strategy in case of implant failure: my only option could be an IGAP flap, fat taken from the lower buttock crease. Tissue flap reconstruction is considered by plastic surgeons to be a permanent solution with a more natural result, getting away from the prosthetic nature of implants.

Currently I am waiting for an appointment to discuss IGAP and whether I go for it sooner or later. There is no doubt in my mind that a tissue reconstruction would be the ideal for me; although it would mean more major surgery, two operations done 3 months apart. Once the recovery is complete hopefully my breast surgery will be over for possibly the rest of my life.

It turned out that the symptoms which brought my operations forward were not cancer but extensive atypical lobular hyperplasia, a marker for bi-lateral breast cancer.This is one of those tricky conditions which does not get picked up on mammograms as the changes are contained within the cells; it is usually only found when invasive. I feel that everything I have done has been justified by this discovery and I feel very fortunate. The breast surgery team who has looked after me for the last few years has been supportive and pro-active in guiding me through the process and I can only praise their professionalism. My trust in them has been a huge motivating factor in my decision-making.

Things have moved on considerably on the Genetics side since I first had an early consultation 8 years ago so I am talking to them again about possible testing for the BRCA gene;although I have 2 sons there is still a risk for them especially as there is already a history of male breast cancer. If we did test positive this raises questions about other cancers such as ovarian so I am glad of the team's continued support.

Risk-reducing surgery is a big step to take and it is not a choice to be made lightly. Screening options are available and can be discussed with a Genetics team. Equally reconstruction is not for everyone but I am as convinced as ever that it has been the right choice for me. My close family has been very supportive and we are all happy and very relieved that it is done.