I ignored one symptom, then a routine test changed everything

Darlaine Honey

Published January 24, 2025 4:00pm Updated January 27, 2025 12:04pm

Darliane Honey - Swimming helped me after my double mastectomy — I was diagnosed with breast cancer in October 2016 (Picture: Darlaine Honey)

‘What if my scar bursts open, and my implant comes out?’, I thought wildly, as I gingerly climbed down the swimming pool steps and into the water.

Of course, that can’t happen, but it all felt so new. It was my first time swimming since I’d had a double mastectomy and reconstruction.

I was nervous at first, but I needn’t have worried. Swimming was wonderful. Breaststroke in particular really helped loosen the muscles around my scars.

I’d finally found a form of exercise that worked for me.

I was diagnosed with breast cancer in October 2016, after a routine mammogram led to some more extensive screening.

After further tests, it became apparent that I had breast cancer. ‘It’s lobular’, they explained.

I only ever had one symptom; but I never thought it was breast cancer. It was the tiniest, most subtle thing.

I used to do burlesque, and whenever I had a corset on, I’d notice a pinprick-size dimple on one breast. It vanished when I took the corset off again, so I never thought anything of it.

I had that small dimple for around four years before the mammogram picked up the cancer.

I never thought, ‘Why me?’. Because – why not me? One in seven women in the UK will develop breast cancer at some point in their lifetime, after all.

I just wanted to get on with treating it.

I had several lumpectomies: Approximately one per month for four months.

My surgeon operated on the area where my dimple was, taking a piece of breast tissue each time. They’d check this tissue and the surrounding area – trying to ensure there were no cancer cells left in the vicinity.

They do this to get a clear margin of the affected area to help them decide if they’ve got all the cancerous cells. As they thought my area was small, that’s where they operated.

What is lobular breast cancer?

Invasive lobular breast cancer is the second most common type – but very few people have heard of it. So often, breast cancer is associated with a lump; but with lobular, that’s not always the case. It certainly wasn’t for me; I never felt anything.

Instead, the cancer grows through the breast like a spider’s web – and consequently, lobular breast cancer is incredibly hard to feel, or find at all.

But as I had been doing a lot more peer reviewed research about how this specific type of breast cancer operates, and realised that these repeated lumpectomies weren’t the way I wanted to go, I requested a bilateral mastectomy – having both my breasts removed.

I had learned that lobular breast cancer is a little more likely to be found in both breasts, and that because of the way it grows, it’s a very difficult cancer to find.

I knew a double mastectomy was the right thing for me.

For one thing, I didn’t want to have just one breast removed. My bra size was 38EE; I wanted to be symmetrical. 

But mostly, it was about the psychological torture that would have plagued me without a double mastectomy. I would have wondered every day whether that same cancer was spreading its tendrils through my remaining breast and not being caught. 

Since my other breast  was seen as healthy, I had to argue my case – but in the end, with my great surgeon supporting me, I had a double mastectomy in May 2017. 

On removal of my first breast, surgeons found that cancerous cells were in all areas of the breast.

Also during the surgery, it became apparent that I had cells which could potentially turn into cancer in my other breast, too, but they were still contained in the lobules. This is known as lobular carcinoma in situ, or LCIS. There is no guarantee these cells will turn into cancer; but no guarantee they won’t, either.

I had my implants put in a year later, in 2018. 

The hardest part of the whole mastectomy process, in the end, was the expanders they gave me, which go under the chest muscles and steadily expand the tissue ahead of having implants fitted. It felt like wearing a metal bra that was three sizes too small, 24/7.

I was also struggling physically, which wasn’t helped by all the Instagram content I saw by other people with breast cancer. They all seemed to be getting better so rapidly; running marathons, for example. 

That wasn’t my reality at all. If I went running, I’d have to spend the next four days recovering because my joints hurt so much as a result of my hormone medication (which I have to take long term, as it deprives breast cancer cells of oestrogen, which helps cells grow).

The more I scrolled through Instagram, the more I saw content by people who were running long distances, perfecting their weight training, or spending hours in the gym. It made me feel as though I’d never exercise again. 

But then, I found We Are Undefeatable– an online campaign that supports people living with health conditions to be active in whichever way works for them. 

Scrolling through their website, I saw so many people who were just like me or worse – but they were managing to exercise, even while sitting in a chair. 

I decided to see how I got on with swimming (Picture: We Are Undefeatable/Hanna Maule Finch)

I realised I didn’t have to be like the people I saw on Instagram, running marathons. I could do what worked for me. 

So I decided to see how I got on with swimming. 

Swimming was brilliant for me, but I was wary of doing too much, too soon. After looking at more We Are Undefeatable videos, seeing the many ways that people with different conditions adapt exercise to suit their needs, I suddenly had the idea to try doing some Tai Chi and yoga in the water, instead of powering up and down the pool. 

I started swimming a couple of lengths, then I’d adopt a warrior pose from yoga and just walk through the water holding the pose. It was fantastic – the water helped me feel so supported throughout the exercises. 

Now, some days I can do more than others. I might go for a walk in the park today; tomorrow, it might just be a walk down the road. I’ve found that small steps are best – you can only do what you can do. 

Signs and symptoms of lobular breast cancer:

Unlike most breast cancer, lobular rarely forms a lump. If you have any of these symptoms, go and see your GP and find out.

A tugging sensation in your breast
A change in the skin of your breast such as dimpling, puckering or a dent
Stabbing pains or pain that is there all of the time
A thickening area in your breast
A change in fullness or swelling
An itch on the skin or inside your breast
Changes to your nipple such as inverting or ticking in a different direction
Discharge or oozing from the nipple

I have issues with my hands now, because of my medication; I drop a lot of things, so weight-lifting wouldn’t work for me.  

But I no longer see pictures of people doing resistance training and think, ‘Why can’t I do that?!’. Now, I know that just lifting my shopping from my car can still be hugely beneficial. 

And that’s why I love swimming so much; it gives me such a sense of achievement. My body’s supported in the water, so it doesn’t hurt as much; and there’s nobody nagging me or pushing me to do something I’m not ready for. I just get on with what I can do that day. 

That would be my advice for anyone recovering from surgery who wants to dip their toe back into exercise: go at your pace. If you don’t feel like doing it, don’t do it; or work around it. One day, you might just lift your cup and that might be enough, because it might really hurt.

Instinctively, I knew what was best for me and my body when I pushed for my double mastectomy.

I didn’t want to be left with one boob, then have to have it operated on later. I’d had enough operations. And I didn’t want to live my life worrying about whether the cancer had managed to get to my remaining breast and risk more surgeries. 

I did what was right for me then; I’d make the same choice now. And I don’t plan to stop prioritising my body’s needs any time soon. With exercise, or anything else. 

This article was originally published December 8, 2024

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