I noticed the lump at the top of my right breast whilst relaxing in bed watching ‘Have I Got News for You’. I was wearing silky pyjamas, so was running my hands over my pyjama top as it felt smooth and silky. I kept returning to the same spot at the top of my breast, then began comparing it with the other side – no corresponding lump. The lump was no bigger than a centimetre, so I wasn’t certain of its significance, but by the end of the programme I had decided it was significant enough to ask my husband Ian to take a look. He felt around, but couldn’t feel what I had, but said sensibly that if I thought there was a problem I should make a GP appointment.
I saw the GP the next morning, not quite believing what I was going to ask her to look at. Things felt even more unreal when after she examined me, she agreed that there was a lump on the one side, and that she should make an urgent referral to the breast clinic.
The next couple of days were spent trying to put things into perspective. It was probably nothing, it was only small so even if it was something it was good that it was small and caught early. My mind did sometimes take me forward though prophesising that if it was cancer then what would the kids do without me there, what would Ian do? I felt angry that if it was then it really wasn’t fair – I was supposed to be around to help my boys through life, school, careers, relationships. I was supposed to grow old and see their children, and to see my boys become parents, and to do all the things that Ian and I had planned to do with the rest of our lives.
I managed to see a consultant within 2 days, as I am fortunate to be part of a Private Health Scheme. Mr Sharif was pleasant and friendly, confirmed that he could feel a small lump, he suggested that it might only be a cyst. I held onto this possibility with hope and a degree of pleasure that there was indeed the probability of an easy explanation that could be easily dealt with without any negative consequences. Once in the scanning room under the care of Consultant Radiographer Dr Metha, it was a matter of a few seconds after I had suggested Mr Sharif’s assertion that it might be a cyst, that I could tell by his face that it wasn’t. He confirmed that there was a lesion in one of the milk ducts – something he referred to as ductal carcinoma in situ [DCIS]. He wrote up his report there and then which I had to then take down to Mr Sharif. Before returning to Mr Sharif I called Ian – we had both been hanging onto the possibility – to us then probability that it would be nothing to be concerned about, so Ian hadn’t come with me, and I had to tell him the news over the phone. Mr Sharif said he would organise initial surgery as soon as possible, probably within 2 weeks.
The lump was removed after 8 days, Mr Sharif confirming that in his opinion it was confined to the milk duct and he had not noticed any signs of spread, although a sentinel node biopsy had been taken as a routine precaution. If this came back positive, a mastectomy and axillary node clearance would be necessary. If negative, I could have a blast of radiotherapy and that would be it. We learned that relying and believing in the first bits of information you get didn’t always help – whilst it was great to think on the positive side, and I am usually a cup half full person, we were faced numerous times with additional information that we hadn’t been expecting, and which tended to be more serious than we had initially anticipated.
So, the news to follow was that firstly, a second operation was necessary as the margins of the tissue removed had pre-cancerous cells present. Then came the histology results – firstly confirmation of DCIS, then hormone receptive – meaning a more aggressive cancer, and finally that it was HER2+, also meaning very aggressive. The sentinel node biopsy was negative so no need for more radical surgery other than the wider excision already proposed. However, I had been focusing on the information we had been given regarding further and on-going treatment and had been secretly congratulating myself that at least I didn’t have to have chemotherapy. Wrong! Because of the HER2+ result, the treatment was Herceptin, but this could only be successfully administered with other chemotherapy drugs. I was devastated, and decided that from that moment it really suited me best to read as much as I could about the condition and treatment, expect and plan for the worst and hope for the best. This allowed me to feel more in control, although some people saw this as being morose and morbid – I looked at it as being practical and realistic – as one reality could indeed be that the treatment would not work and that I would be facing a terminal illness.
The following surgery was straightforward, and I waited with nervous anticipation for the chemotherapy – not that I was looking forward to it, but rather wanted some medicine in me that would get rid of any remaining cancer cells sooner rather than later, and wanted to get the treatment started so that I could start the countdown for it to finish. One of the things I was dreading was losing my hair. I had met with a lady who had lost her hair during treatment and I had been out to get a wig which I had been parading round the house in [on top of my own hair]. I had read about all the possible side effects of the drugs to be taken – the list was horrific, but I tried to rationalise that they have to state everything that might happen, and that I might be lucky and not suffer most of them. In any case, the medics were so good at symptom management, that any common side effects would probably be averted anyway. I had told the kids that some days I might be so tired that I may not get out of bed, but actually I functioned fairly normally. I felt a bit spaced out on occasions and got to know what was my best time after chemo, which was usually the middle week, so aimed to do anything requiring concentration or exertion during that week and resting up in between.
The hair started to go after the second treatment, and when it started coming out in handfuls, I called a friend who is a hairdresser and she cut it all off for me – so I had to wear the wig. I got used to it after a while, but hated looking at my image in the mirror. Just reminded me of ‘Voldamort’ in Harry Potter, so actually my wig became something I really wanted to wear because looking at the alternative caused a lot of negative feelings and a very poor body image.
It had been suggested that I should have a course of radiotherapy following the chemo, but during a consultation towards the end of the chemo, Mr Sharif asked if I would rather consider a mastectomy. I was a bit shocked and on asking why it seems he remained concerned about any further pre-cancerous cells that so far had remained undetected. I felt that since he was the expert, I should follow his guidance, so 6 weeks following the end of the chemo, I had a mastectomy. Unfortunately, due to the recent chemotherapy, it was not possible to have the breast re-constructed at the same time, so I spent 8 months with only one breast – which created further body image problems. In March 2015, I underwent a Dieppe procedure to re-construct my breast using tissue taken from my lower abdomen. The surgery was extensive, but I recovered well, and a year later had a nipple formed on my new breast, and had the other breast up-lifted to mirror the size of the new one and later, a tattoo. Now in a steamy bathroom mirror without my glasses on I look better than ever, and more importantly – for me ‘normal’. Just need to try and keep the new flatter tummy …….. ! BUT despite all the great friends I’ve made because of cancer, I – wouldn’t wish this on anyone – so this campaign and awareness raising is crucial – let’s go for it!