PUBLISHED ON: 18 June 2020

39-year-old Rachel lives with her partner and two of her three children. Due to COVID-19, her access to neratnib was cancelled for several months. 

Rachel and her partner standing together inside an old church

I thought it could just be a cyst 

Rachel was diagnosed at the age of 37 in 2018. She initially went to the doctor in January of that year after feeling pain in both breasts, but after a referral and a mammogram was told nothing was wrong. Months later, in May 2018, she woke up one morning and found a lump on one side. 

‘I thought it could be a cyst,’ she said.

Rachel mentioned that she’d had breast implants years earlier, and wondered whether those were causing her discomfort. 

I worried about how it would affect my son 

‘I went back to the doctor for another scan, but the results weren’t clear. It wasn’t possible to have a biopsy, so I had to have a lumpectomy. I was in the middle of moving house at the time, it was all very stressful. 

‘I can’t really remember the exact moment I was told I had breast cancer. My son was with me. He’s a very sensitive soul, I worried about how it would affect him. I didn’t want him to hear about any of it, I just wanted to go home.’ 

The next day, she phoned Breast Cancer Now. 

‘Because I was told on a Friday, I would have had to wait the weekend to talk to someone about what was happening. So I called Breast Cancer Now’s Helpline, and I found them to be very reassuring. They definitely helped.’ 

I wish I’d had a double mastectomy 

Rachel was eventually diagnosed with stage 2 invasive ductal carcinoma with widespread DCIS. Two of her lymph nodes were affected, so she had a mastectomy with lymph node clearance. As well as this, she had chemotherapy, radiotherapy, then goserelin, trastuzumab and tamoxifen

'I was worried about having chemo, as I didn't want to look poorly in front of my children.'

Though she says she took to the treatment quite well, noting that she didn’t lose her hair, she was not happy about the outcome of her surgery. 

‘I would have preferred a double mastectomy, if I’m honest. I’ve tried things like Knitted Knockers and joined Flat Friends on Facebook to ask for advice, but nothing really feels right.’ 

She later found out she had inherited the altered CHEK2 gene, which puts people at an increased risk of developing breast cancer too. She felt that having a mastectomy on the other side should have been an option for her. However, she has been unable to have one. On top of that, she's worried that her 19-year-old daughter might have the same gene, and could be at risk in the future.

Rachel has no idea when she will be able to have a breast reconstruction, especially now that this particular type of surgery has been delayed in many areas due to COVID-19. 

COVID made me feel anxious 

‘I was watching it all happen in Italy and Spain early on. I made the decision to stop going out myself in early March, and I kept my sons in, too.  

‘I received a letter saying I was in the vulnerable category, which worried me. Especially now I’ve been told that my younger son should be going back to school soon. I asked my GP, "What would you do, if you were in my position?’’ 

As Rachel is not in active treatment, the GP believes the letter was sent to her in error. She was reassured that it would be safe to send her younger son to school, and she has felt more secure about letting her older son socialise with his friends (from a safe distance) as well. 

The NHS have been incredible 

Though she was trying not to leave the house as much as possible, Rachel did have to go to the doctors on one occasion. 

‘I felt some swelling in my chest, so I phoned my GP. They called back very quickly and told me I could come in. They were brilliant about the whole thing. I was worried I would have to go to hospital, but they saw me at the local surgery - and everyone was wearing PPE. They reassured me it was just a problem with the muscle. I was offered a scan to be sure, but I turned it down.’ 

Rachel was also able to have her six-monthly check-up with her oncologist over the phone. 

I have been left feeling trapped 

Rachel hopes she will be able to start neratinib soon, which she was prescribed in November last year - but was recommended she could not have, due to the risks associated with coronavirus. 

Even though things are now looking up for her, Rachel has felt the impact of the COVID-19 crisis. 

‘Throughout this whole thing, I’ve felt very lonely. I think everyone has, regardless of whether they’ve gone through cancer. You just feel stuck. Even if you’ve got family around you, you feel trapped.’ 

Rachel wishes she’d had more emotional support during this time. 

‘Even on Facebook groups, you don’t want to talk too much about your own experience because you don’t want to worry people who have only just been diagnosed. And when you get a letter telling you that you’re at risk, you just want someone to talk to about it.’ 

 

If you are feeling isolated during this time and would like to speak to others in a similar position, our Forum is open to everyone - no matter what stage they are at in their experience with breast cancer.

Forum