Breast Cancer Now supported me when coronavirus affected my treatment

'I was shocked'

Earlier this year, Rhianwen found a lump in her breast while getting changed at the gym. She called up her GP and was referred for some tests. After a biopsy, an examination from a consultant, and two mammograms, she was told she almost certainly had cancer.

‘I was shocked. I’d gone to the appointment alone thinking I’d just have some checks and it wouldn’t be anything’ she said. She never expected to get the news so soon. Rhianwen was given a Breast Cancer Now booklet on primary breast cancer to explain more about her condition.

It wasn’t until 5 March that she received confirmation of her biopsy results: invasive breast cancer grade 2, ER+, HER2-. She was booked in for a lumpectomy on 16 March.

'Coronavirus changed everything so quickly'

The weekend before her surgery, she and her family took the caravan up the coast for a weekend away together. When they checked into the park, they were given a leaflet about coronavirus and there was a lot of hand sanitiser and handwashing - but everything else was normal.

Rhianwen was expecting to have surgery, radiotherapy and hormone therapy. As the virus was starting to become more apparent, she called to confirm if her surgery was still going ahead, and was told that it was. Her husband could be with her sometimes, but far less than would usually be allowed. And since then he has not been allowed to accompany her to any of her other appointments.

On the day of her surgery, the first coronavirus cases were diagnosed in the hospital.

Rhianwen had a lumpectomy and sentinel lymph node biopsy. Ten days later she went in for the results, again alone, that revealed her cancer was actually grade 3 - but the lymph nodes looked to be clear.

In different times she would have been offered the Oncotype DX test and possibly gone on to have chemotherapy, but the risk of contracting coronvirus was too high.

'It was a difficult thing to take in'

‘While the consultant was lovely, it was tough to sit and be told that the cancer was larger and higher grade and chemotherapy would have usually been recommended, but now it wouldn’t be,’ she said.

The next steps were to start taking hormone therapy straight after surgery and wait for someone to be in touch about radiotherapy.

For the next few days Rhianwen really struggled, playing everything back and thinking about what her treatment would have been without the outbreak. She called Breast Cancer Now’s Helpline to talk through her situation.

'Speaking to a nurse on the Helpline really helped me'

‘I wanted to run through what had been told and check what the normal treatment would be to know how affected I was. I wanted to know the facts and be informed and the call was really helpful,’ she explained.

‘They went through all my questions so that I could be really prepared for speaking to my breast cancer nurse. They also followed up with me once they’d found some further information on the test and guidelines that I’d asked about, which was great as I then had it all to hand.

‘Until my biopsy and reading the booklet, I didn’t know there were different types of breast cancer. So when it came to asking questions about treatment, it’s been a learning curve for me. Speaking to a nurse on the Helpline helped me understand whether the questions I had could be answered. I didn’t want to be seen as making a fuss and it was reassuring to know that I could question things and ask for more information, and I then felt more confident to talk to the nurse and consultant.’

'I’m so isolated from my support network'

After that, she called hospital back with a page full of questions for them. Her breast care nurse put her in touch with the consultant. Rhianwen raised her concerns about not having the Oncotype DX test, and the consultant agreed to it.

When it was carried out, the results came back much higher than expected. As a result, Rhianwen is now going to have chemotherapy.

‘It feels like continuing treatment, for those who can do so safely, is becoming more routine,’ she said.

‘One of the hardest parts of the whole experience has been not seeing anybody. I haven’t been anywhere since my surgery on 16 March, aside from the hospital and the GP. I’m just at home in a bubble with my children.

‘All the things that I’d normally do to cope with stress I can’t do anymore – like seeing friends, meeting for a coffee. I’m so isolated from the support network I’d usually rely on.

‘My family too have found it hard not to be able to be there for me. One of my sisters lives three hours away and after I told her I’d be shaving my head before chemo, she said she’d drive to my house and shave her head too, at a safe distance!'

'I want to treat my cancer as much as possible'

Rhianwen says she would have liked to have been more included in the discussion about her treatment.

‘Things have improved as I’ve brought things up myself, challenged, and asked questions. I want to treat my cancer as much as possible in the same way it would have treated it before the outbreak.’

For her, the decision to have chemotherapy was quite straightforward.

‘The virus is a "what if", but I know I have cancer, I know the risks of it coming back in the future. I’d find it hard to not have done everything I can and would have spent time wondering what if.

‘I want other women to know it’s OK to ask questions.’