Debi’s secondary breast cancer was finally diagnosed long after she first told her doctor about her symptoms. Now, she reflects on what could have been done differently, as well as how her diagnosis impacts her life.

Debi, standing outside wearing gym clothing, flanked by two friends

I received no information when I was first diagnosed

When I was diagnosed with primary breast cancer, I was given all these packs and leaflets full of information. Too much information, almost. When I was told I had secondary, I received nothing at all.

I had so many questions. What treatment did I need? Was I going to die? How long did I have? Those really awful thoughts popped into my head immediately.

It was scary, being left like that. I had to go out and do my own research, and we all know that Doctor Google is never the best place to turn.

Thankfully, my oncologist is brilliant, and I know now that I can go to him for help. But after running into so many issues with getting a diagnosis in the first place and then being left with very little information after getting the news, I have lost faith in the doctors a little bit.

There is so much more we could do for people who have just finished primary treatment

The symptom that made the doctors check for secondary was a lump at the site of my mastectomy, but there may well have been other things going on that I didn’t notice.

Once I finished treatment for primary, I did go a bit mad with things. I started a degree, my family and I went on more holidays, I became a lot more active.

It sounds cheesy, but having a diagnosis of breast cancer does make you do that. You get this new perspective on life, and you just want to whizz around and do everything.

I lost weight during this time, and was also experiencing a bit of tiredness – but I put that down to the longer-lasting side effects of treatment and being much busier than I used to be. Now, I realise that my secondaries might have had something to do with it.

What scares me is that, if the lump had come up somewhere I couldn’t feel, it could have been much longer before I realised something was wrong.

With that in mind, I do think more could be done for people who have finished treatment for primary. Not just follow-up mammograms, but other scans, too.

More information and advice would also be a huge help. I know that nobody wants to hear about the possibility of secondary breast cancer when you’ve just dealt with primary, but had I been more aware, I would have made more of a stink about the lump I found.

I’m now focusing on ticking off my bucket list

For the first year, it was only in my sternum. Unfortunately, the treatment that was keeping me stable stopped working, and it crept into my lungs, liver, and spine.

I had to fight for seven months to get myself on Trodelvy, as it’s my last hope for more time.

Up until it spread to my spine, however, I had still been able to live normally. I only stopped working when the pandemic hit because I was vulnerable.

I still drive, still cook and clean, and still go on days out. I think I drive my household mad sometimes; I’m always trying to do things to tick off my bucket list. We can’t travel abroad anymore because of my treatment, but I’m doing as much UK travelling as possible.

Not long ago, I got done up by two of my friends - a makeup artist and hairdresser - and had a night at the opera. I did a Pretty Woman night with my husband. I also made it to the Riverdance, which was always a big bucket list for me.

Whether it’s a cup of tea with a friend or a fun day out, I always make sure I have something in my diary.

We do as much as we can, but sometimes the pain slows me down. It’s hard to accept, because I want to maintain a normal life, but I know the metastases are spreading faster.

It’s difficult, but I have support

I think the hardest bit is not being able to make future plans. Whenever my kids say things like, ‘On my wedding day...’, my heart sinks. I want to keep them grounded in what’s going to happen, but I also don’t want to take those hopes away from them.

Fortunately, I have found support in some online secondary breast cancer groups. If I need advice, I turn to them. You can just put out your feelings and someone will call you, and you can have a rant and a cry to someone who actually understands.

I enjoy helping them out, too, because we all have our bad days. Sometimes, we meet up in person. Honestly, I’ve found this much more helpful than getting advice from the hospital. It means a lot more when you’ve got that friendship there.

It’s not the best club to be in, but it is a very supportive one.

 

You can follow Debi's story on Instagram @iamwonderwoman_29

 

Signs and symptoms to be aware of after primary breast cancer

Signs and symptoms