Testimonials

I was diagnosed with breast cancer in February 2024 in the UK. It had a profound effect on me: I wondered, was this the beginning of the end of my life? And if I survived, how would the surgery and treatment affect me? It was a frightening and isolating time. The waiting is one of the worst things – waiting to speak to your consultant, waiting for the results of biopsies or pathology reports after surgery. When the first surgery, a lumpectomy, didn’t achieve the “clear margins” that were hoped for, I had a second operation. The surgery can make you feel quite vulnerable – it is a strange and nerve-wracking experience, I was worried about complications, and even the after-effects of the general anaesthetic can be alarming. Just the physical recuperation took a few weeks each time, and the sight and feel of the scarring is hard to get used to - my body doesn’t scar well.

Then I was told that the second surgery was not enough, and a mastectomy was recommended. Like many women who choose to have breast reconstruction after mastectomy, I was recommended to have a procedure that involves taking tissue from elsewhere on their body to form the replacement breast. This is a relatively new type of reconstruction that usually gives very good long-term outcomes in terms of the natural appearance and soft texture of the new breast.  However, it requires highly skilled, time-consuming and delicate surgery. It is very demanding for the surgeon but also a serious and taxing procedure for the patient, with impacts and potential complications for two parts of their body: the donor site where the tissue is taken from, as well as the breast area where it is painstakingly reattached with its new blood supply. It was a big decision to make.

None of the doctors and nurses treating me told me that most people experience complete loss of normal sensation in and around their breast after a mastectomy, and in many cases, it never returns. I found this out for myself online. The more I thought about it, it didn’t seem worth going through this major procedure, with the damage to healthy parts of my body, the many hours of surgery, potential complications and long recuperation period, all to have a reconstructed breast with no sensation. So I seriously considered the alternatives: breast reconstruction with an implant, or not to have reconstruction, or even to have no further surgery and hope that my cancer didn’t come back. At that time it was thought that all my cancer had been removed, and the mastectomy was to ensure that remaining pre-cancerous tissue was also removed.

When I raised the issue of loss of sensation during a consultation, one NHS surgeon said to me words to the effect of “but we don’t get complaints from people about numbness after mastectomy. It’s not like it’s your arm or leg”. I wonder if he would say that to a man who was going to have no sensation in his penis after surgery?

Another surgeon, specialist in reconstruction, joked to my partner that he might like me to end up with larger breasts, as if she thought the appearance and size of my breasts and what my partner thought about it, were all more important than how it felt for me - how my breast would feel, how I would feel about my breast. She never mentioned the sensation of the new breast at all.

Looking back, I am still shaking my head in disbelief at this attitude of otherwise excellent surgeons! The way your body feels is probably about as important to most people as how it looks, isn’t it? Why is breast sensation not discussed with patients facing mastectomy?

When I eventually realised that I was psychologically stuck and unable to make a decision about my next treatment steps, I started researching breast reconstruction that aims to restore breast sensation. It turned out to be a long road! My local NHS team were unable to help, and I tried the Royal Marsden in London without success. In fact I couldn’t find anyone to help me in the UK, but the United States seemed to have many institutions that were engaged in this specialist surgery; I contacted various of them, and I will always be grateful to Dr Andrea Moreira at UPMC, Pittsburgh, for her time, support, and helping me along my journey. She selflessly directed me towards a couple of surgeons closer to home, which was how I ended up speaking to Dr Stefania Tuinder at MUMC, Maastricht.

I can’t praise Dr Tuinder and her team at MUMC highly enough. They are so kind and sympathetic, efficient and among the most highly skilled specialists in the world in what they do.

The central fact is, that the hope of restoring sensation in my breast made the risks of the reconstructive surgery worthwhile for me. I wanted a breast that would feel like a breast - not just something that looks like one.

When I eventually had the mastectomy, performed by Dr Keymeulen at MUMC, it was discovered that I had several more small cancers in my breast, so it turned out that breaking through my indecision about having a mastectomy may have saved my life. Put another way, the chance of having a breast that both looked and felt like mine, made a very important, possibly life-saving difference for me.

I am doing well after my surgery, feeling strong and capable again, and my life is getting back to normal. I have encouraging signs of returning sensation in my new breast but I know it’s a slow process. I am more grateful to Dr Tuinder and her colleagues than I can put into words. I said from the outset that I wanted to do anything in my power to spread the word to other people – especially to other women who are faced with mastectomy, but also to medical professionals, researchers and policy-makers.

We need to talk about breast sensation after mastectomy. It matters – it affects quality of life and mental health. There needs to be better understanding and available information about nerve-conserving surgery and the surgeons who specialise in it, even if it cannot immediately be available for anyone who wants to have it. And I hope it becomes much more widely available soon!