Claire Hall was diagnosed with Paget’s disease of the breast, a rare form of breast cancer in 2015. We had a quick chat with her at Breastfest Manchester about the importance of being your own health ambassador and how early diagnosis helped to strengthen her resolve.

Let’s start by talking about your story. How did you first notice that something was wrong?

I would say that the story really starts in January of 2015; that was when I noticed two black specks on the tip of my nipple. I scrubbed them off and they didn’t stop bleeding for six months. I also started to notice a slight inversion in my right nipple around the areola.

I knew that this was a physical change that could potentially be cancerous. So, I went to my GP and they prescribed me with eczema ointment. If it didn’t get better, however, the GP said they would refer me to a clinic.

When the cream didn’t resolve the problem, my GP referred me to the breast clinic. I had an ultrasound, which came back clear, and then a succession of about three or four different appointments where I was told, “There is nothing to worry about, but let’s keep an eye on it.”

By the very last appointment, I wasn’t going to go because I felt I was going to be told the same thing and that I was wasting their time. Luckily, there was a voice in my head that told me, “No, you need to go.”. So, I went to the doctor, and they ran a biopsy on me. Two weeks later, I found out that it was cancer.

It sounds like it took a lot of persistence on your part to get a clear diagnosis. I suppose this idea of ‘not wanting to waste the NHS’s time’ is something which many people can relate to.

It is. And this is exactly why I am eager for more women to step away from protocols so that they can become their own health ambassador. After all, nobody knows your body like you. So, if you do spot a change, go straight to your GP and get it checked out. If you continue to notice symptoms and you are still not happy, then persist, persist, persist.

As someone who was diagnosed with Paget’s disease, how useful do you think it is that people learn about rare forms of breast cancer alongside the more conventional types?

It is critical. Before I was diagnosed, I had never heard of Paget’s disease and I imagine many women have never heard of it, either. This makes identifying the symptoms that much harder as it may not be a notable change and it often graduates over time, which only makes it more difficult to spot.

But to your point, we do need to talk about the rare forms of breast cancer more. There are still many different types that people haven’t heard of, so it is important that people learn about the range of symptoms and what they could possibly mean for them.

It seems to me that a lot of women don’t pay much attention to their breasts, so they won’t necessarily notice any changes to them.

Yes, most people I speak to say, “I don’t really check my breasts because I don’t know what I’m looking for.”

To me, this is why campaigns like Breastfest are so important as they get the message of breast awareness out to as many women as possible without depressing or scaring people. It is about making people feel empowered to be breast aware so that they become their own health advocate.

That is a key message for women, and a very positive one, too. Along with being breast aware, however, there are also regular screenings for women aged 50+. How important are these screenings?

It is essential that women take those screening appointments because changes can occur very quickly in certain cancers.

Those checks might seem like an inconvenience at the time, but they can be a lifeline for some women. If you are tempted to forego your visit or postpone it because you might be frightened of the result, don’t. The sensible approach is to go to your screening and move on with your life. There is no greater reward than peace of mind.