Secondary Breast Cancer Symptoms: Why My Persistent Arm Pain Was Misdiagnosed For 12 Months

You know your body better than anyone – but what happens when no one listens? Welcome to Ms Diagnosed: a HuffPost UK series uncovering the reality of medical gaslighting. With new stats showing that 8 in 10 of women have felt unheard by medical professionals, we’re sharing the stories of seven whose lives were nearly lost to the gap between their symptoms and a system that refused to listen. As the UK introduces Jess’s Rule – a new mandate for GPs to ‘rethink’ after a third visit – we’re exploring why the medical system is still failing women and how we can start to fix it.

The pain was absolutely unbearable.

By January 2024, the pain that had started in my forearm had spread to my neck; and it was agony.

On the way to pick my daughter up from school, I’d be in tears because it was so excruciating. As I approached the school gates, I’d think, ‘Just power through!’.

I’d been contacting my GP surgery for a year; but, while tendonitis and a nerve conduction test were floated, the real cause of my symptoms wasn’t picked up. And it really should have been; because I had a history of cancer.

Eventually, in February 2024, I was diagnosed with incurable secondary breast cancer, which had spread to my lungs, liver, lymph nodes and bones; among other areas.

And I can’t help wondering whether the cancer would have spread so much if it had been picked up earlier.

I was diagnosed with primary breast cancer in 2016; and it’s worth saying that my treatment, from my first appointment with my GP onwards, was fantastic. I had a lumpectomy, followed by three weeks of radiotherapy. Subsequent test results showed my chance of recurrence was low, so my oncologist said I didn’t have to have chemotherapy.

Fast forward to January 2022, and I started getting a deep, dull ache in my left forearm.

It was strange. I did go to the gym, but I hadn’t injured myself. At this point, I didn’t want to go to the doctor; it felt too embarrassing to go and say, ‘I’ve got armache’.

Now, of course, I’d advise anyone with these symptoms to go to the GP; no matter how trivial or embarrassing it may feel. But back then, I just didn’t know.

I remember saying to a friend, ‘What if it’s the cancer again?’ but they said, ‘No, it won’t be,’ – because, of course, no one knows ongoing, unexplained pain can be a symptom of secondary cancer. So I dismissed the thought.

But it got to the point where, if the pain came on when I was having a conversation, I couldn’t concentrate on what was being said; so I decided to go to my GP in January 2023. I specifically remember her saying to me, “It’s so weird that you haven’t done anything to cause it!” – but she just gave me some exercises for tendonitis.

I’m frustrated by the fact that she thought it was strange and yet didn’t look into it more; but I’m far more disappointed in the GP I saw next.

I tried the exercises, and I tried taking painkillers, too – but, obviously, none of that did anything.

Around a month or so later, the pain started spreading to my neck and shoulders. It got to a point where I couldn’t lift my left arm past my shoulder. I tried to hang from the bar in the gym in the hope it would stretch it out – I knew I was strong enough; but I physically couldn’t do it.

Now, I know there were so many tumours that they were causing an obstruction.

I was always in pain. My husband booked me a massage, and I thought, “Good, I’ll have that, and then I’ll feel all loose and relaxed”. But, of course, I didn’t; because the pain had nothing to do with the muscles.

I went back to the GP surgery in September 2023, and saw a different GP. I told him all about the unexplained neck and arm ache, and said the area above my collarbone was really tender.

He examined me – but throughout the appointment, his manner made me feel as though my symptoms weren’t worthy of his time.

He then suggested I should have a nerve conduction test, which he referred me for.

He’d warned me there’d be a wait for that test, so I started Googling, hoping to find ways to manage the pain in the meantime – and I read about how there are lymph nodes just above the collarbone, which was where I was getting the pain.

As soon as I saw that, alarm bells started ringing and I felt really scared. The pain was on the same side as my breast cancer; and I knew breast cancer and lymph nodes are often connected.

I used the NHS messaging service to contact that same GP, saying I’d realised the area I’d mentioned as being tender was where my lymph nodes were; and I mentioned having had breast cancer before. I was worried, and I wanted to let him know what I’d learned.

He replied saying he hadn’t found any lymphadenopathy (swelling of lymph nodes).

But roughly three weeks later, I noticed a pea-sized lump in the lymph node area. I wasn’t as worried as I should have been, because I’d been reassured by the GP that he hadn’t noticed anything of concern.

The pain was also getting increasingly unbearable, though, so I contacted the GP again – through the messaging service, because I didn’t want to waste their time with more appointments – and said the pain was constant. He replied saying I could make an appointment to explore pain relief options.

“He’s still thinking it’s not anything to worry about,” I thought, feeling reassured.

By January 2024, I couldn’t live with the pain any longer; so, even though I finally had a date for the nerve conduction test, I went back to the GP. This time, he found lumps in my lymph nodes; and he acted surprised, saying, “How long have you had these?!”.

“That’s the area I told you was really tender,” I said.

He referred me to the hospital; and from that point on, my care was wonderful. I had an ultrasound and a biopsy, and I felt fine during the tests, but whilst I waited with my husband to see the consultant and I was alone with my thoughts, I started to realise: “It’s the cancer, isn’t it?” I broke down in tears.

When I saw the consultant, she confirmed my fears. “I’m really sorry,” she said. “It does look like the cancer’s come back.”

The appointment where I received my official diagnosis was six days later, on my husband’s 40th birthday. ‘It is cancer, and the care is going to be palliative,’ said the consultant – and I couldn’t stop crying.

“I don’t mind what you do,” I insisted. “Cut off my arm; do whatever you have to do; but I can’t die. I can’t leave my husband or daughter.”

“I’m sorry,” she replied. “If it turns out there is any option for surgery we’ll do it, but because of where the cancer is, I don’t think it will be a possibility.”

At that time, I thought I’d only have months to live. My husband and I were both distraught and utterly overwhelmed.

Now I know that, thanks to incredible advances in cancer treatment, my prognosis is much more favourable.

But I can’t help wondering what could have been. I know you can’t cure secondary cancer; but if it had been picked up sooner, would it be so widespread now?

I’m constantly aching and have been unable to return to work. Without a pension or life insurance, this has had a huge impact on my family.

The hardest thing is, I’ll never know what effect being diagnosed so late has had on my prognosis.

I know GPs have an incredibly difficult job, but the symptoms I went in with are common symptoms of metastatic breast cancer. I want every GP to know the symptoms of secondary cancer; and I want primary breast cancer patients to be told, “Hopefully, it never comes back; but here are the symptoms to look out for”.

Because I just didn’t know.

Charli has been greatly helped and supported by Breast Cancer Now; in particular, by their ‘Younger Women Together’ events, which are opportunities for women aged 18-45 who are struggling with cancer to come together, share their experiences and support each other. Find out more here.