Giving hope to those affected
by secondary breast cancer
My name is Janette, I am 64 years of age and due to secondary breast cancer, I am now retired. I have a son and a very supportive husband.
I love the outdoors. Before cancer I had a horse which I loved riding out in the countryside (that was my chill pill). Due to bone mets I am no longer able to ride but manage short walks in the countryside and going to the local sports centre to do yoga and pilates.
In January 2022 I was feeling unwell and very tired. I could not feel any lumps in my breast and put it down to all the work I had been doing over the covid years at the test centres aged 61.
In early February 2022 I decided to treat myself to a hot stone massage to unwind. However, the following morning I felt a lot of fluid in my left breast and a small lump which over the weekend worked itself down to the corner of my breast. It felt like a stem of a small twig with a few very small lumps branching off.
On the following Monday I managed to get an appointment at my GP’s Surgery who said it was an abscess and sent me away with some antibiotics. During that week I was in pain with my left breast and went to see the GP Surgery again and the doctor was not sure what it was but agreed to refer me to the hospital breast clinic, but it would take 2 weeks.
I spent the whole weekend in a lot of pain and was not happy, so I decided to go back to the GP Surgery and demand to see a doctor. Thankfully I saw a Senior Practice Nurse who has been brilliant throughout my cancer journey. They referred me straight to the hospital breast care clinic and before even a biopsy was carried out the breast care nurse told me it was cancer.
I was given a biopsy, and the following week I was told my cancer was Lobular Cancer ER/PR Positive, HER2 Negative and involved some lymph nodes.
From there, I was given a breast MRI and a CT scan. I was scheduled for day surgery - a mastectomy on my left side. I asked if I could have a reconstruction at the same time, but was refused it and told I could have a reconstruction done later.
My surgery was scheduled for March 2022 but due to the surgeon and various staff having covid my surgery was cancelled. I had the mastectomy on the 9th of April with the removal of the left breast and 20 lymph nodes. Of the 20 lymph nodes removed, 12 were found to have Invasive Lobular Cancer.
I was then told I was clear of cancer and put on Hormone Therapy Letrozole and bisphosphonate (Zometa). I had 3 weeks of Radiotherapy. In August of 2022 I began to feel very ill and knew something was not right. I pushed for a CT scan and low volume bone disease was found in my Sternum, Right SI Joint and L1 of the spine.
My journey has had many twists and turns since then. I was on Tamoxifen before suffering a minor stroke. I was on Exemestane, Fulvestrant with Palbociclib, back off Palbociclib and then back on it! This, along with antibiotics, scans and tests have all been in response to changes in my tumour levels, cancer progression and secondary infections. I have been told that Enhertu is the better treatment for me going forward, but NICE have stopped people with HER2 negative/low from having this drug in England due to financial reasons. Instead, I have been offered chemotherapy - either Capecitabine or Paclitaxel. I have a CT scan in a weeks’ time and will have to make a decision on my next line of treatment.
During this journey I developed an infection in my spine, accompanied with bad back and hip pain. I was lucky not to develop sepsis at this time. My bone mets remained stable for a couple of years, before my CA15-3 tumour marker started to rise in April 2024. After just over a year of stability, my tumour markers started to rise again, and my Lobular Cancer had mutated to PIK3CA and P10.
The whole cancer journey is such a roller coaster of emotions and ups and downs due to worry, lack of sleep, being tired and losing over two and half stone in weight.
You have days where you can not think straight and lack concentration. I am unable to function like I did pre cancer and get frustrated with this. There are days when I just do not want to go out of the house. I have lost a lot of my confidence and I am frightened of having another stroke.
In October 2023 I attended a local retreat run by Jo Taylor. I met a lot of ladies with secondary breast cancer and felt I was not alone, and we all understood the ups and downs of secondary breast cancer. As a result, I was introduced to Make 2nds Count Facebook and the web site which was a game changer for me to be able to understand and talk to ladies who were going through the same feelings, pain, lack of sleep as myself. This then gave me the confidence to attend the Breast Cancer monthly meeting where I was able to compare hints, tips, feelings with other ladies with secondary breast cancer.
It also gave me the confidence to attend the three day Make 2nd Count Patient Summit in June 2025 in Liverpool which helped me understand this disease more and made me feel I was not alone anymore.
Following on from the monthly Maggie’s Breast Cancer meeting, I teamed up with local fellow secondary breast cancer friends - one of which I helped with the launch of a local Make 2nd Count Tea and Chat, and as a result became an ambassador. This has given back a new found confidence in myself.
Thank you to Janette for sharing your story. If you would like to find out more about our Tea & Chat support groups, visit: https://make2ndscount.co.uk/support/community/tea-and-chat
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