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When Beth was diagnosed with breast cancer at 33, she struggled to find other patients her age. After joining the Younger Women Together course, she was able to find the support she needed.
Last year, I went to the GP about a strange sensation in my left breast. I just knew something wasn’t right.
The GP examined my breast and found a small, pea-sized lump. However, up until the point when was removed, I couldn’t feel it, and neither could the breast specialist consultant.
When the results came back, I was told I had oestrogen receptor positive (ER+), IDC (invasive ductal carcinoma) with extensive DCIS (ductal carcinoma in situ) in my right breast. Following my mastectomy, a further IDC was found.
I was in utter shock. Even during my first lumpectomy, nobody had expected it to be cancer.
I attended this initial appointment alone while my husband waited for me in the car due to COVID-19 rules. Even now, remembering the consultant saying the words, ‘it’s cancer' makes me feel physically sick.
I swore quite a lot and actually vomited after getting the news. I remember quite distinctly not being able to breathe behind my mask. No-one was allowed to comfort me, I couldn’t see anyone’s faces, and everyone was sat socially distanced. The nurse had to disinfect the tissue box I was given before and after use.
Thinking back, the whole scene was totally surreal.
This loneliness was a feeling that permeated throughout the whole experience. Having to attend appointments alone was obviously horrific and has left me terribly anxious.
As for breast cancer treatment, I had a mastectomy with an immediate implant-based reconstruction. As there was thankfully no node involvement and good margins, I didn’t need any radiotherapy. I was advised to take tamoxifen for at least five years, but was told I did not need chemotherapy as there was no evidence of increased benefit.
I was very isolated throughout all this, which I think is probably the saddest thing. I couldn’t even get a cuddle from my mum, my best friend has yet to give my new boobs a squeeze(!), and I haven’t worn any of my old ‘dressing up’ clothes to see if they still look good.
I was told about a lot of initiatives that could have helped me, but they weren’t running due to the pandemic. I feel like I’ve been denied access to so much that would have made the experience more bearable.
Thankfully, there were some online resources that helped me.
I attended a group for cancer patients locally via Zoom, which was really helpful in terms of the practical aspects of recovery such as nutrition and mindfulness.
However, all of my fellow participants were much older than me and we had little in common. Having a young family, being at the midpoint of my career, and experiencing money worries were all things that many of these other women didn’t have to deal with.
Meanwhile, an old colleague who I got back in touch with after finding out she was also being treated for breast cancer suggested I have a look at the Breast Cancer Now website. It was there that I came across the Younger Women Together Online course.
When I found out that it was going to be online, I didn’t think that it would help much - but I’m so glad I attended! It was such a godsend. Just being able to share my experience with other women who got me, without judgement or pity or indifference, was a relief.
The course had some fantastic themes that helped me to explore all the aspects of my life as a young woman, as well as how to assimilate this with the seismic shifts in myself. Just seeing other women thriving and living full lives made a world of difference to me.
I’m now part of a WhatsApp group of a few women I met through the course and it’s so helpful. We’re there for each other to vent, to lift each other up and offer support and advice.
To other young women out there, I want to say this: know your body. Don’t leave those little niggles. I am so incredibly lucky that my cancer was caught early, but it’s totally bulldozed through my life and I’ve had to rebuild everything.
And for those women who are struggling with their treatment and diagnosis – you are not alone. We are here and we are strong together.
If you are under 45, have had a primary breast cancer diagnosis in the last three years, and feel you may benefit from our Younger Women Together Online course, we’d love to have you. You can talk to experts, connect with people who understand, and share experiences of having primary breast cancer before 45.