I was diagnosed with primary breast cancer in 2015, and it all felt like a terrible mistake.  I was 43, in my final year of an optometry degree and already had a job lined up to go to after I finished.  

One day I was sat at home and my right breast felt a little sore and just heavy.  I went to lift it to check and felt a lump.  A substantial lump in a very small breast.  How had I missed this?  I don’t know, I had been vaguely aware for a few months that my left breast felt softer and my right firmer, but not of any lumps.  I had no idea that breasts having a different texture was a sign of breast cancer. 

The weeks that followed were a whizz, but I was seen quickly by my GP and referred to the breast clinic one stop shop.  There I was diagnosed with breast cancer; biopsies were taken and I was booked in for surgery without any delays.  The initial results of my biopsies showed extensive high-grade DCIS, but after my mastectomy multifocal invasive breast cancer and lymph node involvement were found. I had chemotherapy and adjuvant Herceptin and soon learned that with breast cancer plans change, and to keep the diary free. 

But with primary breast cancer, treatment eventually does come to an end.  I went back to uni and completed my final year while still receiving Herceptin. I started my job which had been held for me and life looked good.  I became an ace at checking over my body for signs of recurrence. My hospital had recently stopped annual reviews after primary breast cancer, in favour of mammography only.  But as I had a mastectomy there was only my healthy breast to mammogram and even I knew that it was unlikely breast cancer would return in the opposite breast.  

After a few months, I noticed a lump in the dip of right my collar bone, and a slight weakness in my right hand. I returned again to the one stop clinic, where biopsies were taken of my supraclavicular lymph nodes. My hand weakness was getting worse, I was struggling with handwriting and using a knife and fork.  

The results came back, my HER2-positive breast cancer had returned 8 months after my final Herceptin. It was inoperable, but a PET scan showed it had not spread to the rest of my body. In the period since I had been treated for primary breast cancer, a new treatment was approved that I had not received. Herceptin to be given alongside pertuzumab, a gold standard treatment with superior results to Herceptin alone. My oncologist explained it needed to be the first systemic treatment given in the metastatic setting.  But there was a catch.  I could not receive it until 12 months after my final Herceptin for primary breast cancer. 

She recommended a treatment plan of radiotherapy on my supraclavicular lymph nodes, and to start chemotherapy after four months of watch and wait. It was an awful wait, and by the end of the four months, I was feeling quite poorly. I was very breathless and eventually could not lie flat. A CT scan revealed that I had a very large pleural effusion, extensive liver and bone mets. The delay in starting my chemotherapy had caused me harm.  

Eventually, I did start my chemotherapy – 6 cycles of docetaxel over 18 weeks with Herceptin and pertuzumab continuing until progression.  I stayed on this combination for four years; I responded well to it.  The liver mets shrunk and can no longer be seen, the bone mets have healed.  The pleural effusion has never gone away and there are areas of concern in my lungs.  It did progress into my brain, but I got treatment with stereotactic radiotherapy (SRS). I then got 18 months on Kadcyla and have been on Enhertu for almost a year. My last two treatments are certainly less kind than the Herceptin and pertuzumab combination. My bloods struggle to keep up. 

I remember feeling absolutely shocked that effective treatments were being withheld on the basis of rigid rules set by people who had never met me. A treatment my oncologist had selected was denied to me for four months, on the presumption that there was not enough evidence that it would be effective.  

I made a few waiting room friends in those first few months after diagnosis. They are all dead now, bar one. A lady called Emma who was diagnosed with MBC in her thirties. She had transferred to my hospital on a recommendation, having gone through several chemotherapies that had not worked for her hormone-receptor positive breast cancer. Our oncologist applied directly to pharma for a patient access scheme to receive Palbociclib plus letrozole. This treatment is available on the NHS now, but only at first line. Emma remains on this today, after eight years as her third line treatment. 

At the time, Emma was involved with METUPUK, and she introduced me to their work. I became convinced that this was the organisation I needed to be involved in. Challenging policy makers, informing patients of the importance of being treatment line savvy.  Not every oncologist is as knowledgeable as mine is.  

There are still some odd decisions that are made. For example, during Covid, first line patients with HER2-positive MBC were put onto capecitabine tablet chemo alongside Herceptin and pertuzumab to reduce the number of patients in chemo units.

No lengthy technology appraisal sifting of the evidence was required to make this change….

However, it has repercussions for HER2 MBC treatments. The later line capecitabine with tucatinib has been denied to many on the basis of receiving prior capecitabine. If this sounds complicated, then that is because it is, especially to newly diagnosed patients. 

There is still much work to be done, and first line patients are the most vulnerable because treatment lines are new to them. 

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Madeleine Meynell
Twitter @madmeynell
instagram @madeleinemeynell