Table 2 Disease and treatment-related signs, symptoms, and impacts reported at time of diagnosis or following diagnosis

Signs/symptoms/impacts described at diagnosis

Fatigue or lack of energy

I was just feeling always tired and, well, run down. [Participant 1]

… I was starting to, like, really experience were hard breath, I had trouble with my digestive tract, I had some lung issues, I couldn’t breath as well as I generally would like to. And just, I felt overall fatigue. I’m an… I’m a very active person. I am a dance instructor, so I just used to get tired very quickly, frequent urination, things like that. And just overall I didn’t feel as healthy as I usually felt. [Participant 12]

Joint pain (hips, back)

So, I had done a 10-mile charity bike ride with one of my children, and afterwards my back hurt really bad. I wasn’t sure why. [Participant 2]

I had been having left hip pain probably for at least a month or so prior to…the hip actually fractured. That was kind of what led to the diagnosis. But no other symptoms otherwise. [Participant 13]

Cough

And a few months prior to that I started coughing a lot, and I initially thought it was bronchitis and went to urgent care and was treated for bronchitis [but] didn’t get any better [Participant 4]

Headache

I started getting headaches and this started in the summer of 2017, and I was getting the headaches periodically, not every day. And by winter, by December, actually, it had gone to full-blown headaches. I would wake up in the morning and I would have this headache and it would last literally until I would go to bed. [Participant 5]

No symptoms

I felt good, I felt normal. I was still working my full-time job. So, it was a complete shock to me because I didn’t feel any different. [Participant 3]

I didn’t really have any symptoms. I was diagnosed with metastatic in August of 2019. I was first diagnosed with stage two triple-negative breast cancer July of 2018, and I had just had a baby in March of 2018. I’d had her and was breastfeeding and found the lump. [Participant 6]

Continuation or worsening of signs/symptoms/impacts described at diagnosis

Chronic fatigue or lack of energy

I feel like my lungs are on fire, like they’re burning is when I do stairs, when I have to do quite a few stairs. [Participant 5]

I’m still really fatigued. I have a lot of… the cancer, actually. It was spread to my bones when they found it. So, I do have a lot of bone pain, but I am on painkillers. I get multiple joint pains. [Participant 8]

Joint pain (hips, back)

I’ve had pain in my bones. I have pain in my hip; I had to get a hip replacement last year. I have pain in sites where my cancer is. [Participant 3]

Signs/symptoms/impacts characteristic of disease progression

Other

Had an incomplete fracture of my left hip where they…when they discovered that I had a lesion of that in the femur there. So, I have got to have a lovely hip replacement, which had gone well. The biggest thing that I had is to treat, when they did the original diagnosis, I had a, was it a four or a seven? I can't remember the exact size right off hand. I had a four, let's say a four-centimeter mass in the center of my chest that was collapsing my lung and enlarged lymph nodes, so I had…actually I turned out massive amounts of radiation to kill that, and what happened is the bleed off scarred my right lung… so I just have a constant cough and I don't have full function of that lung. [Participant 4]

Treatment-related signs/symptoms/impacts

Surgical side effects (breast pain, lymphoedema)

I wound up having, got a mastectomy, just the one. They didn't do a double. They didn't see anything on the other side, so it's good there. And I had reconstruction done. Was painful… with the chemo and still on medication. [Participant 1]

Gastrointestinal symptoms (nausea, vomiting, diarrhea)

I have a lot of diarrhea symptoms, which are side effects of my medications. And sometimes I get nausea and little bit of vomiting, but it's not consistent. [Participant 2]

Other

So, it's been hard to get used to all of the drugs, and I think I've also become a little paranoid because every time I feel like something's wrong, I just assume that it's disease progression. [Participant 9]