Sharing my mastectomy journey: Early diagnosis, the impact on mental wellbeing, and knowing how to check yourself
I am away from work at the moment, recovering from my second mastectomy. Writing those words feels surreal. How did I get here?
Roll back to February 2019, the University held an event in conjunction with Loughborough Students’ Union called ‘Lumps and Bumps.’ It was co-organised by my immediate colleagues in Marketing and Advancement and its primary aim was to educate staff and students on how to check for signs of breast and testicular cancer.
Through my own self-education, mainly from reading articles in magazines, I felt well-informed about the signs of breast cancer. My mindset was that I would go to the event to support my colleagues and perhaps get some affirmation of the things I already knew. On the actual day itself, I had a busy diary. My inbox was filled with emails. I was starting to have thoughts that I just didn’t have time to go. My line manager emailed me that morning asking if I was going and offered for us to go together. That made me decide I should make the time for this.
So, I went. I wasn’t being completely arrogant in that I did already know some of the information shared. I also learnt some new things I was unaware of. For me, the most valuable part of the session involved hands-on training using prosthetic breasts and testicles which contained lumps that simulate cancers.
I can’t lie… it felt completely weird doing this amongst work colleagues and students, some of whom I knew, some of whom I didn’t. The Chief Operating Officer and Chief Financial Officer were in the same group as me – it wasn’t your standard day at work, for sure! Whilst initially I felt a little uncomfortable, I realised I needed to grow up. If the prostheses were for any other parts of the body, I wouldn’t have been having those feelings.
Ten months later, I was at home lying in bed. It was a December morning and I was in that state of being half awake, half asleep. Unconsciously, I ran my hand over my chest. I turned over in bed and there it was. A tiny, but very hard lump on the side of my breast. Instantaneously it triggered the memory of feeling the lump in the prosthetic breast during the training session. It was a horrible moment. One I will never forget. Adrenaline flashed through my body. I ran to the bathroom and wretched. I just knew.
I went to my GP the very next morning. He confirmed there was a palpable lump but tried to reassure me. He told me that this was very common. When lumps are investigated, they are very often found to be benign cysts or fatty mass. He was absolutely correct in what he told me. I was referred to the Breast Care Centre at Glenfield Hospital in Leicester. Unfortunately, as well as the lump, the mammogram showed some signs of what are called calcifications. These manifest on the image as tiny white dots in clusters. They appeared in two different areas. I was told this could be a sign of early-stage cancerous cells. I had an ultrasound and they took a biopsy from the small lump. During the biopsy procedure, the doctor told me I had done very well to find the lump. It was just 2mm in size. It was cold comfort at the time but underlined once more the importance of the training I had received.
At the time, I was 37 years old. I was not aware of any family history of breast cancer, I had never smoked and whilst there is always room for improvement, I led a reasonably healthy lifestyle. I had never been someone who didn’t believe that anything like this would ever happen to me, but I was pragmatic about things. I was still relatively young and had no reason to think I would experience this.
After that first appointment, I was referred for more tests. I had two MRI scans and another type of biopsy procedure. From my first visit with my GP it took six weeks to get a full diagnosis. It was a really difficult time. I had been told by more than one doctor that it looked to be very early stage and it was completely treatable.
In spite of their reassurances, my mind went to really dark places. I have three young children. My twins were just two years old and my older daughter was seven. I worried that I wouldn’t be there for them. That I would miss seeing them grow up. How would my husband cope? What if the doctors were wrong and it turned out to be worse than they thought?
The series of appointments and waiting what felt so, so long were incredibly hard. I remember channel flicking one evening and ‘I’m a Celebrity, Get Me Out of Here’ was on television. A celebrity was having buckets of scorpions, snakes and spiders thrown all over him. I genuinely thought, ‘I think I’d be alright with that… I’d rather go through that than this mental torture of not knowing what’s going to happen to me.’ It may sound extreme, but I couldn’t suppress those dark thoughts. It made me so angry with myself. As the University’s Market Insight Manager I bang the drum for evidence-based thinking on a daily basis – but I really struggled to think rationally.
When I took my daughter to school in the mornings, I looked around at the other mums – all in their thirties too. They were laughing and chatting, seemingly without a care in the world. Why was this happening to me? I felt like I had let my children down in the most fundamental way. My body had failed me. Of course, if anyone else in the same position were to say that to me, I would tell them that was complete and utter nonsense. How could you be to blame? Nevertheless, I had those feelings.
When I got my diagnosis, it was confirmed to be what they had said. A condition called DCIS which is the very first stage of cancer development. It is where the cells are still confined to the milk ducts and before it becomes what is termed as ‘invasive.’ It was an enormous relief to hear this and I realised how lucky I was to have found it so early. For treatment, no chemotherapy or radiotherapy was required but they told me in my case, I needed to have a mastectomy. Sometimes breast cancer surgery involves a lumpectomy where only the affected tissue needs to be removed but as there was DCIS in more than one area, a mastectomy was needed.
What many people don’t realise is that a mastectomy isn’t one thing. There are different ways of going about it and performing breast reconstructions. In my case, it was possible to have a reconstruction using an implant at the same time as the mastectomy operation. The consultant spoke at length about the aesthetic outcomes of the surgery. I was dismissive of this at first. As far as I was concerned, there were cancerous cells in my body, and I wanted them out as soon as possible and at any cost. The consultant told me firmly that the aesthetics were incredibly important – and she was totally right. I needed to be able to accept my body for the rest of my life. I would see it every time I showered or dressed, and it was crucial that I was as happy as I could be with it.
Whilst I was shown pictures of surgery outcomes, I noticed women of all different ages, shapes and sizes in them. It was difficult to envisage what I would end up with. One of the reasons I wanted to write this piece is to highlight how good the surgery outcomes can be. When I attended a follow-up appointment after my surgery, there was a junior doctor in the room. When the consultant told her I’d had a mastectomy her jaw dropped to the floor. She couldn’t believe it. On very close inspection, you can of course see signs that surgery has happened but I am very happy with the outcome. Many women who go through this find the prospect of a mastectomy very traumatic and de-feminising. Those are totally valid feelings that I completely understand. However, I personally don’t feel that way. Like the scar I have from when I had a C-section, I just see it as a sign of something my body went through – and I survived it.
In March 2020 the country went into lockdown. Like many people during this time, I began to experience some mental health issues. Although I had now been signed off by my consultant, I began to process what had happened to me. I was suffering from anxiety about my health. It usually kicked in on a Friday night when the children were in bed, work was done for the week and I had time to think. At other points in my life, I had previously felt worried or stressed about things but experiencing real anxiety was a totally different thing. I would panic that I was going to get ill again, that it would come back. My thoughts would escalate rapidly to the point that I would feel nauseous, my heart would pound in my chest and sometimes, I went into a cold sweat. It was horrible. I also felt a strange sense of disconnection from my own body. I was afraid of it, of what it might do. For a long time, I was too scared to bathe alone in case I saw or felt something that would take me back to that awful place again. My husband supported me through this amazingly. He would sit with me whilst I had a bath in the evening. We would talk about mundane things and it gave me the distraction I needed.
I realised that I needed some external help. I have always been quite a solution-focused person and when there are problems, I want to fix them straightaway. The trouble with a mental health issue is that there is rarely an easy or quick fix. I decided to seek some counselling. As we were in midst of the pandemic, I didn’t fancy my chances with the NHS waiting lists so I turned to the University’s EAP (Employee Assistance Programme). I would urge anyone who feels they need any kind of support to use it as I found it an incredibly efficient service. Within 12 hours of completing the online form, I was assessed over the phone. I was then allocated a counsellor and had my first appointment the following week. I received six weeks of completely free and confidential counselling over the phone. This was mainly talking therapy. I told her how I felt, about the anxiety and I cried a lot. She gave me some techniques to help control the panic. I’ll be honest, not all of them worked for me but some were pretty effective and I still use them when I need to.
One of my biggest struggles was that I felt I should be handling things better. Thousands of other women go through this and with much more serious cancers than mine. Why wasn’t I moving on in the way I felt I should be? Over time I have tried to reframe this and not be so hard on myself. The way I see it, worrying about what might or could happen is an inescapable part of human nature. It’s the ‘fight or flight’ instinct kicking in and anticipating possible danger so we can protect ourselves. What I try to do now, is accept that those thoughts might come but then ask myself, ‘is that a fact or is it a thought?’.
In December 2021 I got some bad news. My mum, whom I am very close to was diagnosed with breast cancer. She was 69 at the time. It was so distressing because of the love I have for her and because it reopened the box of my own troubles. Fortunately, Mum’s cancer was detected at a relatively early stage but she endured six months of gruelling chemotherapy and lost all of her beautiful, thick hair very quickly. It is so hard to see someone you care about go through that. Because of the advances in treatment and early detection, she got the all-clear just over a month ago. It couldn’t have been a better outcome and we are so, so grateful to the NHS staff who supported and cured her.
After my first mastectomy, having my other breast removed had always been on my mind and I had discussed it with my consultant a few times. She was very clear with me from the start that this was not medically necessary and she wanted me to give myself more time before making that decision. When the situation with my mum arose I talked to the consultant again and she understood my psychological need to feel I had done everything I could to protect my family and myself from future problems.
I had several appointments with a health psychologist to assess my reasons for wanting the surgery and to ensure I had fully considered all the implications and arguments for and against it. It’s important that this happened. It’s not right for every woman and all of the health professionals wanted to be certain I would not regret my decision at a later date.
So, now here I am. I am naturally sore and uncomfortable, but my second operation seems to have gone well so far. I feel sure this was the right decision for me. I’m not advocating mastectomy as the only route to dealing with breast cancer risk by any means. It’s a fairly drastic action but I wanted to highlight that it’s not as frightening as it may sound in case that helps others.
Of course, as October is Breast Cancer Awareness Month, I also wanted to reiterate the importance of knowing the signs of cancer and of how to check yourself. High-profile celebrity cases like Sarah Harding or Julia Bradbury do this much more effectively than me – but even if you think you know it all, take five minutes now to remind yourself. This applies to men as well. Whilst it’s rarer, men can also get breast cancer.
I am proud to say that the NHS saved my life – but I am also proud to say, so did my colleagues at Loughborough University.
Market Insight Manager, Marketing and Advancement
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