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Mum Rachel was unaware that, after treatment, her breast cancer could still develop into secondary cancer. She says much more should be done to raise awareness of secondary cancer.
I was diagnosed with primary in April 2021. For a few weeks I’d felt pain in my left boob in bed. One morning I felt it and found a lump. It felt quite big, almost like a cocktail sausage.
I phoned my GP the next morning and went to be examined. My GP referred me to the Breast Clinic.
I waited almost four weeks, and when the day came, I had a mammogram, ultrasound and biopsy. I was told they couldn’t say what the lump was until the biopsy result came back. I waited 10 days to get the results. I never thought I’d die from it - I was advised that I might only need a mastectomy.
My lymph nodes showed clear on the ultrasound and MRI, but during the mastectomy and sentinel lymph node biopsy, two out of six were positive for cancer. A month later I had a full node removal and a further one was found to be positive.
I was told I’d need chemo. I asked for a CT scan before starting chemo, as I’d gone from ‘possibly only needing a mastectomy with clear lymph nodes’, to cancer being in my nodes and needing chemo. The CT scan showed a lesion on my sternum and they were unsure whether it was cancer or not. Chemo started, then continued, and I had eight more scans in six months before finally being told it was cancer.
It has since spread to my spine.
After my mastectomy, I remember raising concerns with my breast care nurse about persisting pain in an area where my cancer was located, and her responding along the lines of: The cancer has all gone, you don't have to worry. Obviously, now I know that the cancer hadn't all gone.
This was the perfect opportunity for raising awareness of secondary cancer with me, but it wasn't raised.
I’ve still to this day not been formally told that I have ‘secondary’ cancer. I know what it is, as I know from my own research that once it spreads, then it’s secondary. I was told that it’s spread and where it’s spread to, but no one has actually said the words ‘you have secondary’. But I’ve read in letters the word metastatic, and have been told I’ll be on treatment for life. I’ve also been assigned a secondary nurse.
I’ve learnt that self-advocacy is imperative and this is something I now practise. If I feel something isn’t right, I’ll push for investigation.
I think that [medical professionals] could do so much more to raise awareness about the possibility of secondary cancer.
I’m part of social media breast cancer groups and, so often, I see women celebrating the end of treatment, and statements like ‘It’s over, I’ve done it, I beat cancer’. This always makes me uneasy, no one should ever be complacent.
This type of language makes me feel a little angry because I fought just as hard, I did everything I could possibly have done. I feel a lot of it comes down to pure luck.
I live with my husband and teenage son and stepchildren. My husband has been by my side through everything. I could not have gone through this experience without his support.
I’ve chosen to share only on a need-to-know basis information with my son - it’s hard enough being a teenager. When he found out about my breast cancer, he googled it and this obviously upset and scared him.
When I finally had my sternum lesion confirmed, I explained I’d be on treatment for life. I didn’t use words such as secondary. This time, I told him not to Google, and I said if there was anything he wanted to know or was unsure of, he should speak to me instead.
I feel very guilty about what my diagnosis has done to those close to me. I know it’s not my fault, but I wanted nothing more than to grow old with my husband and watch my son grow up and live his life.
When I was diagnosed with MS in 2016, I never wanted to speak about it and didn’t want anyone to know. As soon as I was diagnosed with breast cancer, I wanted to put it out there on social media, so I put out a post and was so glad I did. I’ve had people message me that I’ve not seen since school, I’ve had gifts sent to me, and the support and encouragement I’ve received has been amazing.
I’ve also been making the most of Breast Cancer Now’s services. I’m about to go to a Breast Cancer Now Living with Secondary Breast Cancer event in Manchester where I look forward to meeting others in similar situations.
I’ve also used the Breast Cancer Now website to look up the treatments I’m on, and in the early days I used it to look up the type of breast cancer I had.
From my own experience, I’d advise other women diagnosed with breast cancer to never think of yourself as a statistic and don’t let your life be governed by them - I plan on outliving any statistical timeline. Reach out to people that love you, as their support will greatly help you, and try to do something each day that makes you smile!