I hope my story gives others a bit of light at the end of the tunnel
1999, what a year! I was going to turn 40, we were moving to Sussex, it was the last year of the century – a new millennium and a new life was about to begin.
It didn’t turn out quite as I’d planned. Just before my 40h birthday I’d noticed a tiny lump by my nipple, and a month after my birthday I was in hospital having a breast cancer operation! (Wide local excision and full axillary clearance). We decided to go through with buying the house and moving. We spent Christmas in London, with me not feeling great as chemo had been a few days before. We saw the Millennium in feeling unsure of what the future held, with us in London, with the cat, and a few pieces of furniture and the rest of our stuff in Sussex.
Over the next few months my hair grew back. I finished my radiotherapy treatment and went onto hormonal treatment. Besides getting lymphoedema in my arm, life started to return to a kind of normal. I had a prophylactic oophorectomy as my cancer had been oestrogen positive. Besides a couple of scares my yearly check-ups went well.
Fast forward 10 years. We are thinking of moving again, this time to Somerset – a place we’ve always wanted to live. Can’t believe I’m going to be 50 this year! I’ve actually begun to let myself believe I’ve beaten the cancer. I have had a funny little lump on my clavicle but have had scans and even a biopsy and that seems ok. I’ve also been complaining for ages of back and rib pain and my GP has referred me to a back specialist. I mentioned this as a throw away comment to the breast care nurse during sign –off from breast care at the hospital. She sent me for a scan, which resulted in an x-ray request and then an MRI. I started to get worried.
On the Friday of the week of scans I got a phone call asking me to attend Oncology clinic on the Monday. Once they said oncology I knew in my heart this was not good news but we kept trying to bolster each other’s spirits. It was a long weekend.
The appointment could have been better. My Oncologist hadn’t yet returned from maternity leave and the Doctor was a junior doctor with a professor sitting in and a trial nurse coming in and out of the room. I can’t actually remember what was said but whatever was, the reality was that I had Secondary/Metastatic Breast Cancer – I was incurable!
You can’t describe how you feel, you go through all sorts of emotions, you think you are going to die any day. You can’t believe it but you know it’s happening, and you feel scared, sad, confused……
My treatment started almost straight away as one of the spinal tumours was encroaching on the spinal column, so radiation was necessary to stop this. After the radiotherapy I was put onto Bisphosphonates to help strengthen the bones and hormonal treatment (Letrozole) to try to hold the cancer in check. I questioned if this was aggressive enough, got a second opinion which said they thought it an appropriate plan and started my new life of hospital appointments, treatment, scans and uncertainty.
After over 10 years of being ‘cancer free’ it comes as a huge shock that it is back, not only that it’s back but that this time there is no cure. It takes a while to get your head around it, to adjust and to find a way to cope, to accept that you will need to be on some form of treatment for the rest of your life, to adapt. Yes, it takes a while, but you do get there, once you have a treatment plan you feel a bit more in control. You find your own way of dealing with it and a ‘new normal’.
There are lots of treatments out there and new ones coming along. People with secondary cancer can live for many years. I’ve been kept stable on hormonal treatment for over five years. When I was first given my diagnosis I could only have dreamt that, but it’s a reality. Five years on from the start, it’s marvellous that this first treatment has kept me stable for so long. I hope my story gives others a bit of light at the end of the tunnel that little bit of hope you need at the beginning of this Secondary Breast Cancer journey, proof that whilst incurable, SBC is treatable and can be so for many years.
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