THE ELIMINATE TRIAL:
A PARTICIPANTS EXPERIENCE

Being Diagnosed With Breast Cancer in Your 20s

I was diagnosed in early October 2016, so I was 28 when I was diagnosed. It was out of the blue, completely out of the blue.

Since I’d had my daughter, I’d always had quite lumpy breasts, but when I was in the shower, I felt a lump and thought it better to be safe than sorry so I’d get it checked. Never once did I think that it could have been breast cancer. My GP didn’t think it was anything to worry about but would send me for a biopsy to make sure.

The next day I had an appointment and had seven biopsies on my right breast. The next morning, I got a phone call that they wanted me to go back in because they’d found some other lumps in my right breast. So I went back, and they took a core biopsy.

Six days later I was sent to my GP, and the news wasn’t good. She told me it was cancer of the breast, and it gave me and mum a bit of a reality check, but we thought, “OK, what do we do from here?”

They sent me straight up to Maitland Hospital, and that’s where I met my breast surgeon, Kerry. She was the first one I spoke to after finding out. She told me what was going to happen and where we go from here. Maybe a week later was my first round of chemo, so within two weeks I’d found out I had breast cancer and I was onto my first week of chemo.

I thought having no genetics in our family at all of breast, ovarian, bowel, lung – we had no signs of cancer in our family at all. I thought being quite young, “It can’t happen to me! It won’t happen to me! I’m young; it happens to people who are older.” So when we got the news that it was cancer of the breast we all jumped back a bit and thought it couldn’t be right, that they had it wrong. But they had it right.

It was quite big when they found it. I didn’t think it possible but after all the scans they said the lump was eight centimetres by 9 centimetres in my right breast, so it was quite advanced. I had three lymph nodes that were affected, so it had spread.

Participating in the ELIMINATE Clinical Trial

From there I met Janine, she was my oncologist. She said she thought I should think about the (clinical) trials, that they were doing a study that she thought would be a good fit for me as I was the right age.

I told her I’d do anything to try and better the treatments long-term for other people and that I’d jump on board. We had to do some contracts and make sure I understood everything that was going to happen.

Then I met Sue. She was amazing. I can’t think of anyone better to go through a trial with. With Sue and Janine, I was forming my own little team.

Two weeks after I started my chemo, I had a scan. With the trial, I had to do things a lot differently to your normal standard of your surgery, your chemo, your radiation. We flipped it all backwards. The trial that I was on was the ELIMINATE study. So I could either take the standard road of surgery, chemotherapy, radiation, your follow-up surgeries, but the other way was chemotherapy first with letrozole and zoladex. The letrozole is an oral table that I took every night, and the zoladex was injections into my tummy each month that stopped my ovaries from working. So I was thrown straight into menopause – hot and cold flushes, all the lovely stuff.

Then I started my chemotherapy, and two or three weeks later I had my first surgery. I had a single mastectomy on my right side. Everything went really well, they removed all the tumours and took six of the lymph nodes and my whole breast.

I now have a tissue expander in place so that I can go back and have an implant put in after my radiation. I’ve done five weeks of radiation which finished yesterday. Now I’ve got to wait three or four weeks, then I’ll have my left breast removed and I’ll have the reconstruction.

With the trial, the ELIMINATE study, I had Sue as my carer – she checked on me, made my rosters and appointments, made sure I was taking my tablets, made me basically a whole calendar of a year of when my appointments were, when my injections were, what days were chemotherapy – everything down to when I had to take my injections and tablets. It was very good having her by my side. I had Kerry when I had my surgery. She didn’t leave my side the whole time. She would come in every day to check on me and make sure that my boob was OK, that nothing was getting infected. Janine is my oncologist and I saw her once every two weeks while I was going through chemo. She was the one who put me on to the trial and getting on to helping and giving back to other women with interviews and so on. I cannot thank each and every one of them enough for helping me get through it with flying colours.

I received more scans with the study – I had a couple of more biopsies, core biopsies to send off to the lab just to keep checking while I was going through chemo to make sure things were going the right way. I had a CAT scan about halfway to make sure everything was shrinking and how the chemo was reacting with my body. In saying that, the trial offered a lot more than the standard treatment and that gave them more research.

So what they tried to do was put the three things (treatments) together so the letrozole, the zoladex and the chemo together to see if it would fight the tumour altogether.

To break it down and kill it quicker. And in my case, when I’d finished my six months of chemo, my tumour was one centimetre. So it wasn’t completely gone but from nine centimetres to one centimetre is a lot in just six months.

I found out when I had my breast removed and I had my lymph nodes taken out – they basically pull it apart bit by bit to make sure there was no cancer left in there – I got a phone call from Kerry on a Sunday night.

She apologised because I’d seen her name come up and I was dreading it, but she said, “Hey Tameeka, I couldn’t hold it in and wait until tomorrow, I just had to tell you that I got your results back today and there’s zero cancer in the breast that they removed, and the lymph nodes they took out.”

So that six months of me being on the letrozole, the zoladex and the chemotherapy – it had completely wiped out the cancer that was in my breast and my lymph nodes. So I think choosing to be on the ELIMINATE study and having them all the start really benefited me personally. From what I know now, I don’t have any cancer inside me. I’ve got a lot more scans and stuff to come but I couldn’t have got better news.

I opted to have a double mastectomy when we’d spoken to Janine from the start. I didn’t want to just have my right breast removed. There was no cancer in my left breast. I had nothing, they’d checked. It was just my right side and my lymph nodes on the right side. I said to Janine that I really wanted to have them both removed, that I had a little three-year-old girl and that I didn’t want to go through it again. I wanted to reduce my chances of it coming back, to do whatever I could to make sure that it didn’t return anytime soon. It would have been easier to just remove my right to start with because if we’d taken both breasts and I’d had a complication with my left breast, it would have put treatment back on my breast that needed it. So I said to Kerry that we’d remove the right (breast), have an expander put in, get my radiation done, and then I’ll have the reconstruction after the radiation.

That was my plan. So four weeks and hopefully I’ll have new breasts again, new ‘healthy’ ones as my daughter says – no more breasts that make Mummy sick.

It was hard when I found out I had breast cancer, especially telling the rest of the family. Mum was with me when we found out and the first person she called was my Dad. We were still in disbelief that we’d been told that her baby has breast cancer. I was the baby of the family who had a little girl who was just three. Mum had just lost her baby sister six months before I was diagnosed, so it was a bit raw for Mum. In a matter of a year Mum had lost her baby sister, watched her best friend go through it, and now she was watching her baby go through it herself. So you can imagine the emotions.

The next hard thing was explaining it to my best friends. Me and my four girlfriends are very close. My best friend was about to move to Brisbane. My other two friends … it’s emotional even just trying to talk about it. I think they handled it a lot worse than my family because they thought I was too young, I was their friend, it doesn’t happen to people our age. I just remember the girls giving me a big cuddle and telling me that everything would be OK.

When Janine approached me about the clinical trial, she told me what happens compared to what you get normally. I weighed up the options and she gave me a leaflet and sent me home to read it, think about it, talk it over with the family. She told me I didn’t have to do anything I didn’t want to. I already had it in my mind that I was going to do it. I’m either going to help someone else, or it’s going to help me, or it’s going to be the same as normal treatment.

There’s no ‘lose’ in a trial and that’s what I said to Mum.

I told her I get more biopsies, and I had Sue, I had someone there with me all the time, I’ve got more scans, so they’re keeping an eye on me more through the whole thing compared to standard treatment where you just go in for your treatment and come home. I had Sue’s personal number so I could call her whenever I wanted. Being on the trial was almost a win for me as soon as she said it and gave me the pros and cons of both. What have I got to lose?