Joanne is currently in treatment after receiving a second breast cancer diagnosis. She reflects on the resources she found helpful after her first diagnosis, especially those she used after her treatment finished. 

Joanne, a white woman with a cleanly shaved head, smiles broadly while in hospital. It is the last day of her chemotherapy treatment.

I thought I was done with treatment 

Three-and-a-half years ago, I was diagnosed with breast cancer in my left breast. I’d initially thought it was a cyst, as I get a lot of those, but I thought it would be best to get it checked anyway. When I did, they found a very small amount of breast cancer. 

I was originally meant to begin treatment with surgery, but it turned out the cancer was HER2+, so I needed chemotherapy first. I had that from September to January, then a wide local excision in February. This was followed by what felt like years of radiotherapy, but was actually only a month’s worth.  

And that was that. I was done with treatment. 

In August 2021, however, when I went for a follow-up mammogram, they found some calcifications and decided to do a vacuum biopsy. If you don’t know what that is, they basically hook a hoover up to a needle and suck up a little bit of material.  

When they analysed it, they found a different type of cancer to what I’d had before. 

I’ll still need treatment for another five years 

I needed to have a mastectomy, but as the cancer was so small they initially struggled a bit with the pathology. It turned out to be lobular, which can be slightly harder to detect. 

As I’ve now had two different types of breast cancer, I’m going for genetic testing to find out whether I’m genetically predisposed to developing it. If it turns out I am, I’m expecting to have another mastectomy. 

With my original diagnosis, I had to have a zometa infusion every six months, but I’ve finished with that now. Other than that, it’s just hormone stuff, which I’ll be on for another five or so years – the thought being that, by then, I’ll have been through menopause and won’t be producing as much oestrogen. 

Knowing there was support after treatment was hugely comforting 

One of the things I was really grateful for after my first diagnosis was Breast Cancer Now’s Moving Forward programme.  

Contact with cancer support – whether that’s directly through the NHS or otherwise – is really important for your mental wellbeing. Honestly, it felt comforting just to receive the invite: I didn’t feel like I'd been totally cast adrift. 

I'm not the kind of person who wants to be overwhelmed by these things as I have quite a busy lifestyle. However, as this was during Covid-19 lockdowns, the programme had been moved online, and that meant I could fit it into my schedule. Also, because I live in quite a rural area, there would probably have been some travelling involved. 

It was also really helpful to have an online course as it meant I could watch and rewatch the videos. Even if you initially think you won’t need to, you’d be surprised at how often you revisit something after talking to your doctor or learning something else. 

The lymphoedema resources were especially helpful for me, as I was supposed to be referred to a clinic after my first surgery but must’ve fallen through the cracks as I never received an invite. Being able to catch up on things I probably already should’ve known was a great help. 

Breast Cancer Now’s information is trustworthy 

I work as a researcher at a university, so I’m quite information led. It just makes sense to me to use Breast Cancer Now’s website and services as I know they are a trusted source of information.  

For example, the possibility of another mastectomy was something I wanted to investigate, as I know that having had radiotherapy on the left side means it may need to be different to the right. When I asked at the hospital, different people seemed to explain things in different ways, and I got a bit turned around.  

On the Breast Cancer Now site, I was able to read medical information and also some testimonials, which were really helpful. 

Personally, I didn’t interact or leave many comments during the Moving Forward course, as I was a little further beyond my active treatment by that point. A lot of the women were still in the weeds of feeling grotty and afraid, and I didn’t think it would be particularly helpful or empathetic to say, ‘It gets better.’ It’s an important message, of course, but sometimes you just want to hear from other people who are exactly where you are. 

Occasionally, though, I could offer insight as someone who was 12 months down the line, so I was still engaging with others on the programme. 

Revisiting some of my treatment experiences helped me move forward properly 

When active treatment ended, I felt I could just draw a line under it and move on – which is not an uncommon method of coping. In joining the course, I realised that wasn’t possible, and hearing other women share what they were feeling helped me see that I needed to process some of the things I'd been through. 

Revisiting the experience also allowed me to see how far I'd come in the time since treatment ended. It showed me that, on the whole, my experience was quite a positive one.  

 

If, like Joanne, you have had a diagnosis of primary breast cancer and would like some support to move forward from your experiences, Moving Forward is for you. 

Moving Forward Online