Supporting women whose lives have been touched by breast cancer

Risk-reducing mastectomies done in 2 operations

by c

Why am I sitting here at home just having had bi-lateral mastectomies and reconstructed breasts instead of doing all my usual things in life? Probably because as I have been telling various people who matter, eg my breast oncologist, for the last 15 years I would be very annoyed if I died at 60 like my mum without trying to do something to avoid it!

Cancer was a word which terrified me as a child; I only found out 2 years ago is because my maternal grandmother died of breast cancer at 58 while my mother was expecting as a child, that bereavement impacted heavily on my family but I only understood this when as part of the Genetics assessments, I obtained her death certificate. I was also aware of the word 'mastectomy', not understanding it just fearing it. In 1976 I took the phone call from the hospital which said 'your mother has got to come in for a mastectomy'. Thank goodness we are past such insensitive behaviour these days.

My own journey to avoid that path has been easier although entirely engineered by me. From the first visit to my GP in about 1991 to ask for a referral for Family History screening, I have met with no resistance but only helpful and sympathetic care from health professionals; so I always had confidence that I would be able to get the procedures done at the right time for me. I recognise that I am lucky to have had that choice.

The journey started with annual checks on a Family History programme with mammograms every two years. I had no overt breast problems at this stage. I was offered a place on a Tamoxifen trial early on but I declined. Later on Genetics took an interest in my family and we obtained some evidence, creating on the computer a family tree showing my risk: it was not classified at that point but there was a tacit understanding that if I wanted surgery I could have it but no-one talked about immediate reconstruction which I felt I would want. I remember my mother, pathetic with her softie, all she was ever offered. Later on, a new genetics consultant spent several appointments going through all my options; we obtained further documentary evidence of familial breast cancer including a male cousin. At this point, my risk was classified as high and I was offered counselling which I declined but did continue to contact the Dept with queries from time to time while continuing to be checked annually. I have never been offered any test as we have no surviving relatives with the disease.

Approaching 50, I became more aware of the risk of a possible diagnosis. My grandmother had been diagnosed at 48, my mother at 54, another cousin in her 30s. I felt as though I could be running out of time. Around this time I also developed my first lump which after a needle aspiration turned out to be benign. My children were growing up and I was only too aware of the implications of becoming ill at this point with the knock-on effects for them. I began talking to the consultant in earnest about surgery but still at some point in the future. He always listened, each appointment moving me towards a definite decision. I was allocated a breast care nurse whom I met on several occasions. Reconstruction had become much more the norm and she started telling me about options which I then followed up with much research on the Internet.

A second lump although benign really galvanised me into putting all this preparation into action. My breasts were beginning to show marked changes so I was referred to a psycho-oncology nurse to talk through the issues. This session concentrated on my feelings around cancer to my surprise, not on the issues around losing my breasts. This was something I had never really thought about and was only shortly after I had discovered that my grandmother had been diagnosed at 48; I was already past that age and this was a low point for me: I felt vulnerable and in a way it was a revelation to me that I actually feared the disease far more than the mastectomies.

My very experienced breast surgeon and I at regular appointments discussed reconstruction. We were already long past the discussions re nipple removal etc. I had an open mind but not being hung up on having perfectly natural breasts favoured what I thought would be a straightforward implant operation. At this point he told me that implant reconstruction could be very difficult due to the nature of my physique, a small size 8 with very ptotic (droopy) breasts, thin skin. He referred me to his colleague plastic surgeon who offered latissimus dorsi back flaps which I considered seriously but because of shoulder problems decided were not for me. Abdominal flaps were out as I had had a mid-line hernia dealt with some 15 years previously and had no spare fat. I decided to investigate other less common perforator flap techniques and was by chance led to a plastic surgeon who gave us a way out of the dilemma.

Over these few months of final decision-making over which type of reconstruction to opt for, we were under great pressure to carry out the mastectomies leaving the reconstruction until later. This was because I had developed further worrying symptoms of disease, namely a lump with bleeding from the nipple: just how my mother's symptoms had begun. There seemed no way to avoid just what I didn't want: to wake up flat-chested like my mother. However the plastic surgeon I consulted for a second opinion suggested a two-fold solution: an innovative way of carrying out an implant reconstruction which she felt might be successful with the option of an IGAP flap if it failed or if the implants turned out to be otherwise unsatisfactory. Armed with this, I went back to my breast oncologist at home who agreed to try this method of operating, confident that if it failed I could still have the IGAP flaps. On the morning of the operation I was brave enough to tell him that if the procedure was too difficult, he should simply do the mastectomies. In the event he succeeded in placing the implants in two separate operations.

. . . . . . .

The waiting is over and I feel calm and relieved...I arrive on the ward on a lovely sunny day at 7.30 am fortified by breakfast, knowing that I'll be last in Theatre. My surgeon says he aims to do both sides today. I tell him that if it is all too tricky, he should just do the mastectomies: after all, that's the main point of it all: to get rid of the tissue. I go down at 4pm, rather late and have a chat with the anaesthetist while we are waiting to go in....

....I wake up on the ward very late, about 9pm. The nurse tells me only one side has been done and asks do I feel disappointed? No feelings on that since there's nothing to be done about it. I sleep intermittently, helped by the morphine I was given in Theatre. In the morning I am doped up on codeine then diclofenac which both disagreed with me badly. I spent the rest of the day in a drugged stupor, unable to do eat much though I did make it to the bathroom with help. On day 2 I declined all drugs except paracetamol so that I could get back in control and did a lot better: had a shower, dressings off and a look in the mirror where I could see a black and blue bump bigger than I'd thought, with a transverse scar where the areola had been held together with 3 horizontal steri-strips. The expander has been filled to 100ml in order to make new skin and it feels very tight. The surgeon tells me that all went ok from his point of view though the reconstruction was very difficult and it took a long time to do just the one with the lump.

I got home on schedule on Day 3 and was lucky in that I could spend time on me, healing and thinking through everything I had gone through. There was a lot of grief in the aftermath which I put down to feelings around the loss of my mother. I had no complications but a long period of waiting for the expander to soften. At clinic I was told that the suspect tissue was clear, showing only signs of benign breast change. The healing continued well on the first side and in the meantime I had a 2 month wait for a date for the second operation...this timescale was about right. I felt everyday that I was making progress but it was slightly daunting to know that I would be back where I had started once the 2nd op was done in terms of recovery. The key to success for me was rest and sleep. Some days I slept for hours and felt better for it. Bit by bit I started walking to build up stamina for the second op. I found that if I did a lot one day then the next I would need to rest more. I also found a great need to be looked after and close friends and family were wonderful in this respect.

The day of the second operation came and I just felt a great sense of relief; it had been hard waiting all these weeks especially not being expanded any further because of the need to match the 2 breasts in their post-mastectomy state. I went to Theatre earlier which gave valuable extra recovery time. To my surprise I was much more on the ball post-op. I was only given a small amount of morphine this time and I had asked for my pain relief to be simply paracetamol with a low dose of codeine (8mg) if I really needed it. I managed with only 2 of these and everything went much more easily, so much so that I went home on Day 2, a day early. Now I am healing well; I mostly go about with nothing up top since the skin soreness ( nerve endings healing) is easier to cope with. Healing in the summer is good, lots of warmth and fresh air.

I am pretty happy so far with the way things have gone: dealing with all this has not been an easy time and I know that there will be more emotional baggage to sort through. I am proud that I have taken this step towards hopefully ensuring a healthier future for me. As for the breasts themselves...I am already fond of #1 and am pleased with the symmetry of them both together. As I explained, expanders may not be the end of the recon story for me given the problems posed by my skin/physique but the removal of the offending tissue more than compensates for any future uncertainty.

I attended post-surgery clinic today where the surgeon told me that the pathology report on the tissue was not worrying although there was evidence of atypical lobular hyperplasia. As this benign change is a marker for breast cancer in the longterm it feels a huge relief that the ops are over. Next plans on the medical front are expansion and another appointment in the autumn. My plans include spending time coming to terms with what should prove to be a changing outlook on life.

Next :
Preventative Oophorectomy
Nipple Reconstruction
Areola Tattooing