It seemed a small request; please would I phone a patient who had recently been diagnosed with breast cancer and had been thinking of breast reconstruction. I had made myself available for such advice because several months ago, I too had to have a mastectomy and breast reconstruction. This would be the first of many phone calls.
Speaking to such patients has made me realise how much they are all in a state of panic. I too was in a similar state of mind once I had discovered that my diagnosis was cancer. The strength of these emotions cannot be ignored.
For myself, the awful diagnosis of breast cancer was quickly followed by appointments with surgeons and nurses, to discuss the options. One is in no state of mind to take part in a reasoned discussion. Even taking family members along, isn’t always a help, as they are also shell-shocked and speechless. In my mind, I had immediately fast-tracked to my own death. There seemed no possibility that anything could be salvaged from such an awful situation.
This state of mind is recognised in breast clinics and the specialist breast nurse is often called upon, to pick up the pieces. Unfortunately, one nurse cannot offer emotional support to the whole population of women attending the clinic. There simply isn’t the time or resources in the NHS.
In a state of panic, I decided that I wanted a mastectomy. The loss of a breast seemed at that time to be a small price to pay for a few more months, or years of life. I was in my late forties. My over-riding emotion at that time, had been to get rid of the cancer as soon as possible and then to try and return to some semblance of a normal life. What was a breast anyway? It was only a sac of fat cells which got in the way whenever I tried to run or exercise. Looking back now, I realise that I was not in the right state of mind to make such a decision.
Young women in this state of mind are being offered standard (without reconstruction) mastectomies all over the UK. Panicked and shell-shocked, they are so scared, that they are taking anything which is offered to them. As a patient with cancer, one feels that one’s rights and entitlements have been taken completely away. One’s life is most definitely in the hands of the surgeon and we are grateful for this; yet we will not demand different treatment. Skin sparing mastectomies and reconstructions are not being offered at this stage and because women are so vulnerable at this time, very few actually complain or try and change the service for the better.
I have been a general practitioner for 20 years. I am conscientious with my own learning, to try and identify areas which I know I should know more about. But breast cancer had completely fallen under my radar. I felt well-informed about it, but when I was a patient, I realised that I knew very little. Modern surgical techniques had changed a lot in the last few years. When I thought that I would need a mastectomy and possibly a double mastectomy, as my tumour could be bilateral and multiple, all I could think of, was the horrible scar which I had seen on the chest of an old lady patient in the geriatric day hospital. I thought that I would need prosthesis. Even if I survived, how could I lead a normal life wearing such a thing?
I had heard of breast reconstruction, but knew nothing about it. So it came as a surprise and a relief to be referred to the tertiary centre, because I had private health insurance and could therefore afford to pay for a breast reconstruction. There I learned about skin-sparing mastectomy, where the breast tissue is removed, but the skin envelope retained to allow an implant to be inserted. I was also shown techniques using a flap of latissimus dorsi muscle and skin, to make a natural breast, without needing an implant. The surgeon spent an hour with me discussing the options. She was one of only three surgeons in the UK, who are able to undertake the mastectomy (oncological surgery) and perform the plastic surgical reconstruction. In other parts of the country, the procedure requires the dual input of a breast surgeon and a plastic surgeon. It is not surprising then, that so few immediate breast reconstructions happen on the NHS. Getting a plastic surgeon and breast surgeon together in the same place, more than once a month, is a physical impossibility. The plastic surgeons in my area are shared with a huge area of the Midlands and only visit the county twice a month. The wait to see them is well beyond 18 weeks. So, what often happens is that the women has a normal mastectomy to fulfil waiting list targets, and a reconstruction at a later date. However, this does not prevent the physical and mental scars from a standard mastectomy. The large scar which is left on the chest wall is not readily amenable to stretching when an implant is inserted. There are high rates of skin necrosis and implant failure with these delayed reconstructions.
So, when I awoke from my surgery and looked down, I still had a breast visible under the bed-sheet. It may have been quite numb and lacking in an areola and nipple (to be added later), but it looked like a breast and immediately I felt relieved, and still complete.
Three months down the line, I am back at work. It hasn’t been all plain sailing and I have still suffered from a disturbance of my body image which has been difficult to deal with. I can only imagine what it must be like after a standard mastectomy. So, what advice can I give to my patients when they present with newly diagnosed breast cancer?
Firstly, many of them need one-to-one counselling to help them get through this ordeal, but there are no resources out there to offer such intensive support. Many will have to hope that their GP is well informed and has time to listen; they will have to hope that the specialist breast nurse has time in her busy schedule. Breast clinics are hopelessly over-stretched. Hopefully I can offer her a sympathetic ear and tell my own patients that their first feelings of panic will subside and that there definitely is light at the end of the tunnel. Hopefully, some of them will be fortunate enough to be referred for immediate breast reconstruction. Although the procedure sounds alarming and enormous to contemplate, it is definitely the best option.
All women should be offered the option of immediate breast reconstruction at the time of mastectomy. This is one of the recommendations of the National Mastectomy and Breast Reconstruction Audit 2009(1). In many areas, it simply isn’t being offered or even discussed with patients.
In 2002, the National Institute for Health and Clinical Excellence (NICE) published guidance on improving breast cancer outcomes and recommended that “ reconstruction should be available (to all women with breast cancer) at the initial surgical operation.(2) Revised guidance in 2009 (3) re-emphasised the importance of reconstruction after mastectomy and stated that;
• (Clinicians should) discuss immediate breast reconstruction with all patients who are being advised to have a mastectomy, and offer it except where significant comorbidity or (the need for) adjuvant therapy may preclude this option.
• All appropriate breast reconstruction options should be offered and discussed with patients, irrespective of whether they are available locally
I was very lucky. I had private health insurance and was able to access care in a tertiary centre. What I am absolutely sure of now, is that breasts are not just sacs of fat, which get in the way when running. They are absolutely integral to the way in which a woman identifies herself and radical and disfiguring surgery not only destroys the physical image, but also that woman’s confidence and ability to function in society. The sense of loss and bereavement, even after reconstructive surgery, is enormous. Just speaking to patients in the surgery and on the telephone, brings all the feelings of anxiety and loss straight into my consciousness and makes me realise that getting over this experience will take a lot longer than I had realised.
Breast cancer is generally high in the nation’s consciousness, but rates of breast cancer are increasing, and many areas in the UK are not meeting the standards set by NICE, as evidenced by the audit (1). This has led to a corresponding increase in the demand for surgery. Between 1997 and 2006, the number of breast cancer operations performed by the English NHS rose from 24,684 to 33,814, an increase of 37 per cent. There was also an increase in the number of English NHS trusts performing reconstruction surgery but, over the same period, the proportion of women having immediate reconstruction only rose from 7 to 11 per cent. Immediate reconstruction rates varied significantly between cancer networks. This variation was not explained by patient characteristics or planned clinical treatment. Rates of reconstruction varied from 9% to 43% between cancer networks.
Only 21% of women undergoing mastectomy are having immediate reconstruction, in the UK at present. So, somehow in the current negative financial climate and in an area where disease prevalence is increasing, we need to find ways of improving the outcome for patients with breast cancer. The long-term benefits will be huge for the women concerned and their enhanced mental and physical recovery will surely be visible in their contribution to the work-place and economy of the UK. This needs to be taken into account when measuring outcomes and in auditing mastectomy and reconstruction rates in 2010 and subsequent years.
References.
1. National Mastectomy and Breast Reconstruction Audit 2009; The NHS Information Centre for Health and social care. http://www.ic.nhs.uk/mbr
2. NICE; guidance on cancer services. Improving outcomes in breast cancer-manual update. London .NICE 2002
3. NICE Early and locally advanced breast cancer; diagnosis and treatment. (CG80). London; NICE 2009.
Louise Warburton has been a GP for 20 years but now works mostly as a GP with a special interest in rheumatology and musculoskeletal medicine for NHS Telford and Wrekin. She has been the medical editor of “Hands On,” a GP publication from ArthritisresearchUK , for four years and writes for GP magazines. She will also be taking up the role of president of the Primary Care Rheumatology Society later this year.