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BRCA1, CLINICAL TRIALS & SUPPORTIVE COMMUNITIES

Dimity Paul knew she carried an 80% risk of developing breast cancer since she was 21 years old, although it still came as a huge shock when she was diagnosed with breast cancer at 31.

Being BRCA1 & Diagnosed With Breast Cancer At 31

Dimity Paul knew she carried an 80% risk of developing breast cancer since she was 21 years old.

Her mother had been diagnosed with breast cancer when she was a child, and her grandmother had passed away from ovarian cancer.

Dimity’s mother carried the BRCA1 gene mutation and unfortunately passed this down to her daughter.

But Dimity was proactive upon discovering she carried the gene mutation and booked in to get yearly breast MRIs.

“I decided at 21 I wanted to know about my BRCA gene status, so I could make decisions in life and have a small element of control of something that I couldn’t control,” she said.

“I just wanted to make sure that I could give myself the best chance possible going forward in my life.”

Though Dimity was 21 when she received the news that she had the BRCA1 gene mutation, it wasn’t recommended she start screening until she was in her late 20s.

“At 27 I started having a yearly MRI and I had three of those.”

“In one of those MRIs, I had a thing called a PASH that came up, which is an irregularity that’s not a cancer. But then with my fourth MRI, they picked up my cancer.”

Dimity was only 31 years old when she received her breast cancer diagnosis.

“It was a shock,” she said. “And it sounds weird, you know, you have this gene where you have an 80% chance of getting breast cancer, and yet you’re still shocked when you get it.”

Dimity had plans to undergo preventative measures as she got older, however, her diagnosis came before she had the chance.

“You think, I’ll be fine or it’s not going to happen to me or I’ll have all the surgeries before it happens. Because that was definitely my plan.”

“I definitely planned to have a double mastectomy at 35 and my ovaries out at 40. That was the plan.”

“And even though I had that plan, it didn’t go to plan.”

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Dimity Paul speaks with us about her experience with the BRCA1 gene mutation, her participation on the OlympiA clinical trial and how being a part of a supportive workplace helped her through her treatment.

Participating In The OlympiA Clinical Trial

Dimity was diagnosed with triple negative breast cancer.

She underwent chemotherapy, followed by a double mastectomy and a full node clearance.

However, treatment is limited to prevent recurrence in those with triple negative breast cancer.

Though researchers are working to ensure there is new and better treatment options for those with this kind of breast cancer.

The OlympiA clinical trial is one example of this.

The OlympiA trial investigated if the drug olaparib reduced breast cancer retuning in women with early-stage disease, who had a BRCA1 or BRCA2 gene mutation.

Dimity was offered a place in this clinical trial and didn’t hesitate to join.

“Being able to be part of the OlympiA trial was not only about potentially giving me a treatment option, whether or not I got the placebo, it was also a way to contribute to research.”

“So, if I didn’t get the drug, at the very least I’d be helping find the next thing that might be able to treat that next generation of women with triple negative breast cancer.”

Results from the OlympiA trial show that the drug olaparib reduces the chance of recurrence by 42% in patients with early-stage breast cancer who have an inherited BRCA1 of BRCA2 gene mutation. The researchers involved in the study say these results are significant and provide a new treatment option for patients with early-stage breast cancer.

The Benefits Of Participating In A Clinical Trial

There are many benefits to participating in a clinical trial, such as the potential to access a new treatment and helping to further research into breast cancer. Another lesser-known benefit is that those who participate in a clinical trial often get more time with their treatment team.

“It’s like an army of people, and that’s probably the best thing about being on a trial,” said Dimity.

“It’s not just your oncologist, you have a whole team of trial nurses and they were just the best.”

“They are the loveliest people that check in on you and make sure that all of your side effects weren’t really affecting your quality of life.”

Unfortunately, Dimity did experience some side-effects including nausea and fatigue while on the trial, however she said the level of care and attention she received from her treatment team ensured it was dealt with quickly.

She said she worked with her treatment team to find a new nausea drug that worked for her. As this drug caused some tiredness, they decided as a team that it would best for Dimity to take it in the evening so she could continue to work.

“It was collaborative and it really felt like I was part of my care.”

The Importance Of A Supportive Workplace

Dimity continued to work throughout her treatment but said it wouldn’t have been possible if her workplaces were not as supportive as they were.

Dimity changed jobs while undergoing treatment and she said both workplaces went above and beyond to ensure she was supported.

“I travelled a lot for work, and my employer, during my standard treatment, made sure that I didn’t have to travel as much and if I did travel, which I still wanted to do because I still wanted to participate in life, they made it really flexible.”

“So, flexibility is key when you’re going through chemo as you have good days where you can work and you have days where you’re a space cadet, like you have no idea what’s going on and with your workplace just knowing some days they’re going to get ‘good you’ and other days they’re going to get ‘really tired or challenged you’ and they’re okay with that.”

Though Dimity loved that workplace and greatly appreciated the support they provided, she moved onto a new position to progress in her career.

“When I went for an interview with my current job, I was actually still having chemo and I remember in that first initial engagement, I said, oh by the way, I’ve got this cancer thing, but I’m going to be fine, and my potential employer went ‘okay’ and didn’t blink.”

“You can imagine how many people would just say we don’t want to take that risk.”

She said she was called and offered an interview while still in the hospital bed recovering from her double mastectomy. She told them of her situation and asked if they could push the interview back, which they did without hesitation.

She was successful in her interview and was honest about how she was feeling at the time. She told them of her nausea and fatigue and told them how she was dealing with these side effects. She said the organisation was incredibly understanding and her colleagues were respectful of her situation.

“That workplace made my ability to participate in the trial possible.”

“You could have had all the family support in the world, but they’re not sitting there holding your hand at work,” she said.

“Having a supportive workplace is next level because if people can’t afford to go on a trial because they’re not working, we have less participants in trials and we have fewer positive outcomes coming out of them.”

She said having supportive workplaces means those undergoing cancer treatment are still able to remain social through their work, and they’re able to stay financially stable in the present and also in the future.

“You’re helping them stay financially viable, you’re still contributing to their super, which means in retirement they’re not ending up in a really bad situation.”

“I think what a lot of people don’t talk about when it comes to breast cancer, and it comes to cancer in general, is the financial impact isn’t just clinical costs.”

“So, if you can be a workplace and you can be flexible and you can work around a patient, not only will their financial outcomes be better, but you’ll also give them the opportunity to lean in some extra treatments or lean into trials and have better outcomes for everyone in general,” she said.

“You’re part of something bigger when you keep employing someone who’s going through cancer treatment.”

Dimity’s Hope For The Future

Dimity participated in a clinical trial for herself and for the greater good of all breast cancer patients.

She said she hopes to see a reduction of death from breast cancer in the future and understands that clinical trials are vital in that.

“We can’t get there without science, and we can’t get there without patients being willing to participate in the science.”

“So, we need our researchers, we need our doctors and we need our patients all to work together to get to that outcome,” said Dimity.

“One person can’t do it on their own.”

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