Tests, Scans and Treatments - Helen's story

Stewart

Can you tell me about the moment that you first found out you needed to undergo tests or scans?

Helen

I'd just got back from a wonderful trip to America in 2012, and I bumped into an old friend who told me that she was diagnosed with breast cancer at 46. That night, I had a shower, and I felt a tiny pea-sized lump in my breast. I went to my GP, and she said she was 90% sure that it was a cyst. I wasn't worried at all, didn't have any concerns.

Stewart

What kind of tests or scans were you sent for?

Helen

I thought they were just being thorough. First of all, an ultrasound, and then a mammogram. And then they wanted to do a needle biopsy. And then a lymph biopsy. They said it will probably take 10 days to two weeks.

Stewart

What was going through your mind?

Helen

It still didn't register. I thought then, well, obviously there is something, so I went home and of course just contemplated, a terrible feeling, I kind of knew that there was something.

Stewart

So you didn't have to wait too long for those initial tests?

Helen

No, we got called to the Nuffield in Cambridge. The consultant said, ‘the little lump that you found in your breast, the GP was right. It was a cyst, but behind your breast wall, you have 2 flat tumours’. I had two different cancers growing at the same time.

Stewart

I've never heard of that before.

Helen

Yeah, it is quite unusual, but it's not rare.

Stewart

So the cyst had nothing to do with it?

Helen

The cyst saved my life. I would not have felt the tumours as they were so deep in my breast.

I had my first chemo within 5 days.

Stewart

What were your thoughts and feelings when you received the results?

Helen

I think I just wanted to get on with it, to get treatment started as quickly as possible. My only thought was that I wanted to survive and live and see my daughters grow up. The first thing I said was, please, can you just do my mastectomy now? The consultant said the most important thing is we try and shrink these tumours before removing the breast. I didn't quite understand that, because in my head, if you removed the breast, you removed the cancer. Knowing what I know now, it's very important to shrink it.

Stewart

What chemo treatment did you have?

Helen

I had chemo once every three weeks, and they decided to do 3 lots of one chemo drug, and then I had 3 lots of another chemo; it was a mixed combination for my 2 cancers. And I felt incredibly ill; the second lot really knocked me for 6.

Stewart

How well informed do you think you were about the treatments you were offered?

Helen

They were amazing, but they didn’t know how the chemo would work for me. They said there are things we can do during my first chemo if I had a reaction, and that put my mind at rest.

Stewart

Was there anything you wish someone had told you beforehand about what to expect?

Helen

Don't try and predict too much because you can work yourself up, can't you, worrying about something that might not happen.

Stewart

You then had to wait a period of time before you had scans to see if the tumours had shrunk?

Helen

After the third chemo, they did a CT scan and then a PET scan. My body was responding well after the third lot of chemo. By then, I'd lost all my hair, my eyelashes, my eyebrows. I looked a bit like Golom, but it was the best news that the tumours had shrunk.

Stewart

And what happened after that?

Helen

I had my mastectomy and was then offered a reconstruction, but decided not to have a reconstruction. I thought I was not going to feel any changes if the cancer comes back

Stewart

So, apart from mammograms, are you monitored anymore?

Helen

No, after a certain number of years, you're back into the testing, depending on your age, you are just called up every, I think it's 5 years. I am very vocal about my own health. I believe that we should all be in charge, especially at this time when the NHS is so strapped; you have to be your own advocate.

Stewart

What do you wish someone had told you beforehand about what to expect?

Helen

I think the main thing is that it's ok to listen to your body. You know, and it's ok to say I need to heal from this. You don't have to put a brave face on. You have to find a sense a humour. Don't you? In sometimes the darkest times, I think that's the only thing that can get you through, sometimes is a little bit of humour.

Stewart

How did you feel after treatment?

Helen

My real struggles came after I had my cancer, because then, you know, you think, what now? What I can do? What should I do? If people feel there is something not right. You are told your blood tests are okay, everything's fine, but you still feel there is something wrong. Just keep going back and asking for different tests, because unfortunately, you are one of thousands of people in that surgery. We don't want to be a nuisance, and you know, we can't get an appointment, but it's imperative. The sooner you do, the earlier you can get treatment for whatever it is. It's the best way to survive.