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As someone with secondary breast cancer, I sometimes wish I had someone to check in on me

Sarah was diagnosed with metastatic breast cancer in 2019, two years after her primary diagnosis. She tells us about her treatment frustrations and hopes for more support.

I was told I didn’t need a mastectomy 

I was initially diagnosed with primary breast cancer around October 2017. I’d turned 50 in May and I thought, ‘This is where my life starts.’ I’d got lots of plans. 

I also had a few health niggles that I wanted to get checked out, one of them being a slightly leaky nipple. It had actually been going on since I breast fed, and by that time my children were around 14 and 10. I never thought anything of it but, as I was getting things checked anyway, I thought I’d mention it. 

I ended up getting referred for a mammogram, and straight after it was done I was sent for an ultrasound. Once the ultrasound was finished, the doctor said, ‘We’ll just take a biopsy of that.’ 

I remember thinking: ‘That?’ I didn’t know there was a ‘that’ when I walked in! 

The tests initially revealed I had DCIS. My first response was to ask for a mastectomy, but the surgeon said I didn’t need it and wouldn’t want to lose my boob. It was a small area - a lumpectomy would be fine. 

Months after treatment, new problems occurred  

With hindsight, I think he was a little dismissive of me. Both my grandma and my mum had breast cancer (even though we don’t genetically test positive for anything currently tested for), so I’d always thought that, if anything happens, I’d get a mastectomy.  

After the lumpectomy, the histology report showed I had LCIS, which the surgeon told me wasn’t an issue.  

However, within six months, I started experiencing problems with my boob. I was told I was still adjusting from the radiotherapy and that I just needed to stretch more. I’d been a very fit person, so I wasn’t convinced.  

I went back maybe four or five times, and by Christmas 2018 my nipple had become inverted and my breast had swelled up. It had become painful. CT scans and mammograms hadn’t revealed anything but, when they finally gave me an MRI, it showed some changes.  

I had a mastectomy and complete lymph node clearance, at which point they found the cancer had spread to my lymph nodes and my collarbone area. I had chemotherapy followed by radiotherapy again, after which further scans showed it had spread to my spine. 

A mastectomy may have prevented this 

After being diagnosed with secondary breast cancer I was put on palbociclib, which sent my blood count really low, and letrozole, which made me really achy.  

About eight months after that, I started to see strange patches on my skin, and the doctors told me it was where the cancer had spread locally. Clearly, the medication wasn’t working for me, so they switched me to exemestane and everolimus, which I actually tolerate better than the original regime. 

I’ve also been on denosumab (a targeted therapy for secondary breast cancer in the bone) the whole time. 

My last scan showed that the cancer is relatively stable, other than the changes in my skin which the doctors don’t seem too bothered about.  

I can’t help but think that, had my surgeon just taken my breast off like I asked, I wouldn’t be in this position now. Even after I had the mastectomy, I still wanted my other breast removed. I was referred to a psychologist to discuss it, but before anything could happen I was diagnosed with secondaries. 

Life would be easier if I was flat 

I sometimes feel that the decision not to let me go flat was influenced by my male surgeon's preconceptions about what a woman would want or should look like. It’s not his fault, and he’s a nice guy genuinely trying to do his best for people – but it seems as if the system is set up to give you a particular outcome. 

As a result, I live lopsidedly. Life would be so much easier if I was flat. I can’t comfortably wear a bra or a tight top, especially as it rubs on the skin cancer on my flat side. 

I ended up writing the unit and the surgeon a letter expressing my feelings. I didn’t want it to be a complaint, just something to make him think and see my side of things. 

Interestingly, I’ve since met two women who had the same surgeon, and they were asked what they wanted. They both chose a mastectomy. They’re both at least 15 years older than me, so I don’t know if their age was a factor. 

Living With Secondary Breast Cancer Online has been a helpful resource 

When I was going through chemotherapy, I used Breast Cancer Now’s Someone Like Me service, and I’d previously called their Helpline, so I was in the loop with their services before my secondary diagnosis. I later went along to a few of the face-to-face Living With Secondary Breast Cancer sessions, but then COVID-19 happened. 

The online programme actually works better for me, especially as it means I don’t have to travel anywhere! It’s a series of open access online sessions that you can pick and mix as you like, which is nice because it means you don’t have to feel committed to a certain length of time or number of sessions. It’s all set out in advance as well, so you can see what’s coming up. 

Personally, I really enjoyed the creative writing session, and I have tuned in when there are certain topics or guest speakers I am interested in. As a single mum, I now spend a lot of my time worrying about what will happen to my kids and who will care for them, so the session on talking to children was good for me. 

The programme is well facilitated and is run by people who really get the issues, and who are great at moderating the group. I’ve also got some helpful information from other participants. 

As someone with secondary breast cancer, I sometimes wish that I had someone to check in on me - especially as we don’t get an assigned breast care nurse like primary patients do. For now, the Living With Secondary Breast Cancer is sort of filling that gap. 

Support for you

If you’ve been diagnosed with secondary breast cancer, we're there for you no matter what. We offer face-to-face and online groups where you can talk to others who understand.

Living with secondary breast cancer

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