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Anita’s husband has been living with a life-limiting illness for a long time, which meant it was especially devastating for her to learn she had secondary breast cancer. She tells us about how she took the news, as well as how she explains things to her children.
My name is Anita, I’m 47, and I’m married with two children called Sarah and James.
I was first diagnosed with breast cancer in December 2016, just four days before Christmas. I had six cycles of chemotherapy, a lumpectomy with node excision (which caused me to develop lymphoedema), and finally 20 rounds of radiotherapy.
In August 2017, I started on tamoxifen, which I was originally supposed to take for 10 years.
In January 2021, I woke up one morning to find a lump had suddenly appeared around my clavicle. For a few years, I’d had enlarged lymph nodes under my jaw, and CT scans and ultrasounds hadn’t shown anything suspicious, so we thought they were just sensitive.
This time, I ended up going to A&E because we thought it could be due to cellulitis or infection, and from there I was given some antibiotics and advised to contact my breast clinic.
I had an ultrasound, but the radiologist couldn’t say for sure whether it was a haematoma or a problem with a lymph node. So, I was referred for an urgent CT, which confirmed it was the latter.
Because it was quite close to a major vein, it was too dangerous to biopsy. Instead, I had a scan and then a biopsy of some of the lymph nodes in my neck that I’d previously noted were swollen. When the results came back, they showed that, unfortunately, there was breast cancer in the nodes.
As it was most likely also in my clavicle, I was told it was most likely an aggressive locoregional recurrence.
I was scheduled in to have the affected lymph nodes removed but, a week before surgery, I noticed some nodes on the opposite side of my jaw had also come up. Because of how many nodes had been affected, the surgeon decided it would be inappropriate to do so much surgery.
As it had gone from the right to the left side of my body, it was confirmed as stage 4 breast cancer – meaning it was incurable.
I’m a glass half empty girl and, as much as I wanted to feel good when I got my primary treatment results saying there is no evidence of disease, I think my experience of other things we’ve been through – such as my husband’s ill health – meant I was sort of always waiting for something bad to happen.
However, while I wasn’t exactly surprised to learn the cancer had come back and spread, the news was still devastating – mainly because of the children.
My husband, Simon, has kidney disease, and it was bad enough when it was only his treatment we were waiting on. Before his transplant, we knew it was unlikely he’d survive to see the kids into adulthood or, if he did, maybe not being around for big moments such as walking them down the aisle.
We’ve gradually come to terms with it, though. He’s had a successful second transplant, but transplants aren’t any kind of cure for organ failure, and he’s already three years into the predicted eight to 10 of it lasting.
Our son, James, is only nine, so there’s a high chance he could be orphaned before he’s 18.
Sarah, being a bit older, has been able to adapt slightly easier. From a young age, she lapped up medical information, and we’ve always been as honest as we can in an age-appropriate way. It actually seemed to help her cope to understand why Daddy couldn’t decide some things, or why Mummy couldn’t do certain things.
As upsetting as the news might be, she always wants to know. James, on the other hand, doesn’t. He’s recently been diagnosed with autism, so the way he processes information is slightly different. Sometimes he wants it in little pieces, and other times he can’t really handle it at all.
Sarah has been an amazing big sister in helping James with these things. When I had to tell them about my secondary diagnosis, James ran away and didn’t want to listen, but Sarah was able to explain what was happening. She told him it wasn’t the same as last time when the doctors could give me medicine, and that I wasn’t going to get better.
He accepted the information from her, then he came back to have a cry and a cuddle with me.
For most of their friends, the idea of a parent dying is almost fictional. If they think about death at all, it tends to be to do with a pet or a grandparent – but people don’t tend to talk to their children about their own death.
It is heart-breaking having to sit your children down and tell them that you’re going to die, and there’s really no sugar-coating it. But I do think honesty is the best policy, as their imagination will always be worse than what is really going on.
Since I was first diagnosed with primary breast cancer, there have been new life-extending treatments made available to people with secondaries, and so my hope is that those discoveries will continue.
Of course, those treatments and that research is only made possible with fundraising, so it’s really important to do what you can to help. If anyone reading this is considering doing their own fundraising for Breast Cancer Now – especially for secondary breast cancer research – I'd say absolutely go for it.
If you want to help women like Anita, pledge to raise £1k and change the future of incurable secondary breast cancer, and take on the £1k Challenge. We need more research. More campaigning. And we need to make sure no one faces it alone.