Helen’s story, reflecting on the impact of an early secondary diagnosis and receiving breast cancer treatment during a pandemic

I first discovered the lump in my right breast in June 2019, while on holiday with my husband. It was our first holiday without the children for 23 years and, aged 54, it was meant to be the start of a new chapter as ‘empty nesters’.

Trying to get a GP appointment and a referral to the breast clinic took time. A wet afternoon in August found the two of us arriving at our local hospital in the West Country. At first the consultant thought it was just a cyst; but the intensity on the face of the person doing the ultrasound quickly snatched that optimism away from me. Although it had been suggested that I brought someone with me, I had not known that men were not allowed into the inner-sanctum. I sat alone waiting for the biopsy and clip to be fitted, before returning in tears to my husband.

…men were not allowed into the inner-sanctum. I sat alone waiting for the biopsy and clip to be fitted, before returning in tears to my husband

Seven days later we returned to have my cancer confirmed as a Grade 3 invasive ductal tumour (ER positive and Her2 positive). Treatment was discussed including involvement in a trial. I was advised to write off the next nine months to the tough treatment regime; and for the next 2 weeks I was swept into what felt like the standard round of tests. Little did I know how I would soon crave ‘standard’ and ‘routine’ treatment. Out of the blue, my lymph node biopsy was cancelled. My MRI scan had shown something, and further tests and a PET scan were needed.

After a week of anxious waiting, my oncologist phoned to say that the PET scan had identified a tiny suspicious area, only 2-3 mm across, on one of my ribs. It could be nothing or it could be a secondary growth. I was told that it was very unusual for a secondary to be identified so early in an initial diagnosis. The trial I had hoped to start was off. As I was no longer a primary cancer patient, I was no longer suitable.

Six rounds of chemotherapy, docetaxel, carboplatin plus the targeted therapy of pertuzumab and trastuzumab were prescribed. How easy those words are to write, so different from the experience! I was told that I would have to wait for six months for an official diagnosis of secondary cancer. If the next PET scan showed the area had gone then it meant it had been a secondary growth. If it was still there, then (relatively) happy days.

Three days after dropping our son off at university for freshers’ week, I was having my first chemotherapy. Throughout the ups and downs of chemo, I tried not to focus on the area in my rib but, at times, the thought that somehow it was already too late, that it had already got out, overwhelmed me.

Four weeks after my final round of chemotherapy the PET scan was repeated, as planned. Waiting for the results coincided with an appointment with the breast surgeon to discuss a mammoplasty. Again, the usual was pushed aside; instead of seeing the surgeon it was the oncologist waiting for me: the area had gone, which indicated it was a secondary growth. The news, though feared, was still devastating. It was suggested there was no longer any clinical value in having the tumour in my breast removed or having radiotherapy. Instead targeted therapy to try to prevent further reoccurrence was to continue indefinitely.

Breast cancer treatment during a pandemic

The rollercoaster didn’t stop there. Ten days later a further call informed me that a query had been raised regarding the suspect area; questioning if it could in fact be brown fatty cells rather than a secondary. Unfortunately, more tests offered no further clarification. I was obviously the source of much discussion in the hospital; but when the dust settled, it was decided that I had secondary cancer, but would be treated for primary and secondary in a ‘belt and braces’ approach.

The weeks that followed surgery, including radiotherapy and ongoing targeted therapy, took place under the cloud of COVID-19.

The weeks that followed surgery, including radiotherapy and ongoing targeted therapy, took place under the cloud of COVID-19. To add to the stress I, along with many other people, was identified as being one of the most vulnerable to infection from the virus and needed to shield. I was lucky that my targeted therapy treatment continued, and although my radiotherapy was delayed by over a month it did take place. I know others in different parts of the country have not been so fortunate. My treatment will now continue for as long as the medicine works in preventing a further recurrence. I am hopeful that will be a long time; and I can truly say that I am living with cancer.

Working as a social worker I have worked regularly with health professionals. But until now my personal experience of them was limited. I have now experienced the importance of having a good health team around you: knowledgeable experts in their fields. I have also felt the powerlessness of being a patient; the effort it takes to challenge or question, and the anger that ignites when you realise as you walk away from an appointment that while you were introduced to the three people in the room at your  consultation, it was never explained why they all needed to be present. My cancer, my treatment, and the side effects were all explained and discussed, but I longed for some recognition of me, for the person I had been before that sunny summer holiday. The recognition I needed came from those around me; my family, my friends and those who have sat alongside me in the chemo chairs or in the Oncology waiting room.

Talking to my young adult children about my diagnosis has been hard; wanting to be open but also not wanting them to go into the dark depths that a cancer diagnosis can take you. Four months after our first cancer conversation my son’s Christmas present to me was a song he had written in response to my diagnosis. Every time I hear his song it makes me cry; but over time the nature of the tears has changed. Instead of tears of sadness they are now tears of hope and remembrance for the shared memories we hold, the experiences we have had and the people that we have become.

Over the last 8 months I have reflected on the impact of having such an early diagnosis of secondary cancer. I do feel fortunate to be able to have treatment before the development of any tumours in my body. That is why I asked my son to fundraise for Against Breast Cancer; to support research into the early detection and treatment of this often not discussed, part of breast cancer.