On this episode of the GOSH Podcast, we are joined by Shiraz Italia. Shiraz was twelve when her mom died of ovarian cancer at the age of 48. She had also lost her grandmother to cancer. She suspected family history and decided to pursue genetic testing, but was faced with a 12 to 18-month waitlist. Following her gut feeling, Shiraz sought private testing and found out she was BRCA 1 positive. During her preventative surgery, it was discovered she had a 1 mm-sized tumour on one of her ovaries. Shiraz shares her story on how genetic testing gave her the power to take action.
You can learn more about Shiraz's story here – https://bit.ly/3vQABxR
For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca
Where to learn more about us:
Twitter – @GCI_Cluster
Instagram – @gynecancerinitiative
Facebook – facebook.com/gynecancerinitiative
On this episode of the GOSH Podcast, we are joined by Shiraz Italia. Shiraz was twelve when her mom died of ovarian cancer at the age of 48. She had also lost her grandmother to cancer. She suspected family history and decided to pursue genetic testing, but was faced with a 12 to 18-month waitlist. Following her gut feeling, Shiraz sought private testing and found out she was BRCA 1 positive. During her preventative surgery, it was discovered she had a 1 mm-sized tumour on one of her ovaries. Shiraz shares her story on how genetic testing gave her the power to take action.
You can learn more about Shiraz's story here – https://bit.ly/3vQABxR
For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca
Where to learn more about us:
Twitter – @GCI_Cluster
Instagram – @gynecancerinitiative
Facebook – facebook.com/gynecancerinitiative
Introduction
Thanks for listening to the GOSH podcast. GOSH stands for the Gynecologic Oncology Sharing Hub, an open space for real and evidence based discussions on gynecologic cancers. We'll share the stories of gyne cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecologic cancers. Our podcast is produced and recorded on a traditional unceded territories of the Musqueam, Squamish, and Tsleil-Waututh Nations. It is produced by the Gynecologic Cancer Initiative, a province wide initiative in British Columbia with a mission to accelerate transformative research and translational practice on the prevention, detection, treatment and survivorship of gynecologic cancers. Hi, I'm Nicole Keay, and I'm Stephanie Lam and you're listening to the GOSH, podcast.
Nicole
Hello and welcome back to the GOSH podcast.
I'm Nicole. I'm recording today without Stephanie, another solo session and I'm really excited to invite Shiraz Italia to the podcast.
Shiraz was twelve when her mom died of ovarian cancer at the age of 48 she suspected there was a family history, as her grandmother had also passed away from cancer when she was 39. Shiraz chose to pursue pursue genetic testing two years ago to find out if she had the BRCA 1 BRCA 2 mutation, which would increase her own risk of ovarian and/or breast cancer. She ended up on a 12 to 18 month wait list, but her gut instinct told her not to wait that long, so she got tested privately. The results came back positive for the BRCA 1 mutation and her doctor recommended the removal of her fallopian tubes and ovaries as a preventative measure. In July 2020, she went in for the surgery, which was supposed to be the end of it. But ten days later, her doctor phoned her to let her know they'd found a 1 millimeter sized tumor on one of her ovaries. After a complete hysterectomy and six cycles of chemotherapy. She's now cancer free. She has now made it mission to find a way to decrease wait times to see a genetic counselor and get genetic testing so that other women who have a high risk of ovarian cancer don't have to sit on that long wait list like she did.
Welcome to the podcast Shiraz.
Shiraz
Thank you for having me.
Nicole
Uhm, why don't you start off by telling us a little bit about your family's history of cancer and your own experience navigating that with your family.
Shiraz
OK, so uhm. As you mentioned, my mom died of cancer when I was 12 and she was probably diagnosed 2 to 3 years before that. So you know pretty much my whole childhood. You know the later stages in my childhood were kind of dominated by that cancer diagnosis. This and something like that really stays with you, you don't forget that and so knowing, remembering that, knowing that my grandmother also died of a cancer, but not knowing what kind of cancer. It's always been at the back of my mind. And so that was really my motivation behind getting genetic testing done. We're so blessed now in this day and age to have that option. When my mum was diagnosed she was unfortunately diagnosed at stage 4 by the time it was detected. And ovarian cancer is known as the silent killer for that.
So knowing all that, I knew. I just could not do nothing about it, yeah? So that led me to get genetic testing done. I spoke to my doctor about it. And she put in a referral, and I received a letter back in May of, oh no, I don't even remember now I have to think I'll I'll think about that later, but anyways, I got a letter back from the genetics counselor or the Hereditary cancer program stating that I had been put on a wait list, and I was on the wait list. For which would take about 12 to 12 to 18 months. And that in my mind was just. It was just mind-blowing to me that wait time because I thought, OK, well, I have one direct relative that died at 48 of ovarian cancer. I had my grandmother who most likely had ovarian cancer because by the time she went in for surgery, it was all over her abdomen. It had spread throughout her abdomen and there was nothing they could do about it. So in my mind I thought I would be a high priority to be genetic to get testing done, but that wasn't the case. Um, so I decided something in my gut I did I waited for a few months initially and then something in my gut just kind of said don't wait, you know, figure out another way. So I did. I pursued genetic testing privately. And it was an extremely easy process. It was um, through a website, my doctor helped me and the kit came straight to my home. There was a little tube that I spat into and I put the kit back into a little baggie, mailed it to whoever I mailed it and a few weeks later I had the results and I tested positive for the BRCA 1 mutation.
Nicole
Oh, and the so the wait list itself just for our listeners. So that goes through the BC Cancer Agency, that’s correct?
Shiraz
Yes, that's correct.
To continue this story, I did end up getting my fallopian tubes and ovaries removed as a precaution because of my high risk with the BRCA 1 mutation and my family history and in July of 2020 I had that surgery. And ten days later, my doctor called me back saying they had found a 1 millimeter tumor on one of my ovaries. So I then had to go in and have a complete hysterectomy done and six cycles of chemotherapy after that. And so this 12 to 18 month wait list, really really made me wonder what that could have been the difference between. Finding a 1 millimeter sized tumor versus Stage C, who knows? That kind of really lit a fire under me. I wasn’t able to let that go, yeah.
Nicole
I could understand that that's impactful for sure. You know, not wanting to dwell on what could have happened, you know, it's uh. Very grateful that you were able to move forward and get that private testing, but. In my mind, how many others are maybe in that same scenario as you and and maybe don't know how ask or don't have the accessibility to do the private testing.
Shiraz
Yeah, that's exactly right. That's what really upset me.
Nicole
Yeah, yeah, absolutely. It's been, you know, not that long since you've had your diagnosis and your treatment. Now you know how are you doing so far and how has this period of moving into survivorship then for you.
Shiraz
Umm so February 12th actually was my one year chemoversary. It was the the one year date of my last, chemotherapy. So it's been just about a year now. It was it was challenging. Physically, I feel like my body healed pretty quickly. OK. But it was a mental struggle for me. Because in my mind, cancer equaled death.
Nicole
OK.
Shiraz
Anyone I knew. had died from it.
And so to wrap my mind around the fact that. Your story is different. Your story can be different, was very challenging for a very long time and so. I remember talking to Doctor Dawson who now deals with my hormone replacement therapy and she suggested that I check out Inspire Health. It's an amazing non profit organization that treats the whole person. They have dietitians on hand. They have exercise classes that you can attend on zoom. Right now they have counselors, and so I I did see a counselor for a few months after to help me wrap my mind around the fact that cancer doesn't necessarily equal death anymore, yeah? And and so that I would say would be my biggest challenge post chemo. Other than that, I'm doing really well. I'm back to work. I'm back to the busyness of being a mom and you know the busyness that that brings with it. So yeah, I'm doing well, thank you for asking.
Nicole
Well, I'm happy to hear that.
You know, based on your experience and what you've been through, what would you say your hope for hereditary cancer testing in BC would be?
Shiraz
My hope would be that. If there is a reason to get genetic testing done, if your doctor feels that it is something that you would benefit from that, it would be easily accessible to you. I thought genetic testing costed thousands of dollars. It costs $600 right now.
Nicole
OK, to do it privately.
Shiraz
Yes private, well, if you wanted to pay for it, you could go to life labs and get that test for $600.
Nicole
Oh OK, I didn’t know that.
Shiraz
So it’s not cheap by any means. But it’s not as expensive as I thought it would be, you know I I just assumed it would be thousands of dollars. If there was a cost analysis done on the preventative aspect of genetic testing versus finding out down the road that you've got cancer and now you've got to have surgeries done and chemotherapy, like I don't know how much my condition costs the government. I had two surgeries. I had 6 cycles of chemotherapy. I was in the hospital for a night. In my mind, it makes so much sense too. Be proactive, right?
Nicole
Yeah, I 100% agree with you.
Well, I'd love to just take a moment and acknowledge that you know you were doing some great work and helping to pursue that, making it more accessible and and through UM, your so your family has made a donation through the Maneck Homi Italia Foundation. Yeah, so you know, I think that is a a, you know, wonderful first step into I, I shouldn't say first step, but a wonderful step forward and way for you to you and your family to give back. And and contribute and and hopefully start making some headway in in opening up the accessibility of that.
What would you say the main message that you would want those who have a family history of cancer to take away from this podcast?
Shiraz
I've been shouting it from the rooftops and I'm going to continue to do so go get genetic testing done. It literally saved my life. So it's a simple blood test.
And you know, some people don't want to know the answer. Some people are scared of the answer. But I've I've said this from the beginning. Knowledge is power. When you know you have that power to choose your course of action.
Yes, number one get genetic testing done number. Two, I would say don't let people dismiss your concerns or your symptoms. Uhm, you know. Even my my doctors have all been amazing, but even when I went to them with my family history. Uhm, they didn’t see an urgency the way I did.
Uhm, in my mind, my mum was diagnosed at 45. By the time I turned 39. This alarm bell kind of went off in my head. And I thought because in my mind 48 was the number, 48 was like the cutoff for life for me and I I don't know why, but I mean, I'm assuming it's because of the trauma I dealt with in, you know, watching my mom go through what she went through and so. So I started not panicking, but seeing a real need for something to happen where you know a lot of my doctors were like yes, just because that happened to your mom. And just because it happened to your grandma, doesn't mean it's going to happen to you and I was like yes, but what if it does?
Nicole
How do you know?
Shiraz
Yeah, and you know, yeah hindsight is 2020 and here I am on the other side of it, and I've been blessed to have an amazing team behind me the whole way.
But yeah, don't don't let your concerns be dismissed. Would be my advice.
Nicole
I think that's a very important message. One of the things that you know when you do go through the genetic testing and did you have sisters or cousins, aunts that you then needed to inform? And I wonder if that you know if you did. If you could speak a little bit about how that went, or how receptive others in your family might have been to hearing you know that you tested positive.
Shiraz
Yes so. It was the so the way it happened was because I tested positive the genetic counselors that I initially was waiting to see now contacted me. So because I had this BRCA 1 mutation I was I now had access to a genetic counselor. And I was given I believe it's called like a family file number and basically what that does is it allows anyone in my immediate family to now access genetic testing at a speedier rate. So now because my mum died around 30 years ago, there was no genetic testing at that time and so their first step was to have me ask my dad to go in genetic testing to determine whether it did in fact come from my mom side of the family or my dad side of the family and of course my dad tested negative so we know for sure that it came from my mom side of the family and she had the gene would in the means my grandmother also had the gene, so after my dad tested negative, they then invited my brother in to get genetic testing as well because the BRCA 1 mutation can have implications for men as well.
Nicole
Yes, yeah.
Shiraz
So my sister lives in the states. And so at the same time I was initially pursuing genetic testing, she was pursuing it there as well. And she got her genetic test results back and they were also negative. So my dad was negative. My brother tested negative. My sister tested negative so it was. Lucky me. And I have I have there is a strong strong link with cancer on my mom side of the family. My mum was an only child so I don't have first cousins or aunts on that side, but my mum's first cousins have children, and I have notified them as well. So far, anyone that's had genetic testing done on that side of the family has tested negative as well.
Nicole
What a process.
Yeah, well if your daughter or and son were to listen to this podcast episode in the Future, what is one thing that you'd want them to take away from this?
Shiraz
I hope if they by the time they were to listen to this. I would hope that cancer is not such a scary word anymore.
I would hope that.
See this makes me emotional.
But yeah, I think what I would want by the time I see when I initially got the BRCA 1 diagnosis, my first thought was my own child. And the doctor said to me, by the time your child is an adult and can pursue genetic testing on her own things will be so different in so many ways. And that is my hope. That is my hope that. By the time my kids grow up. It's it's some you know, cancer can be seen as a hiccup. And it's something that you move on from.
Nicole
What is the age that they can get tested at? What's the earliest they do?
Shiraz
I believe they have to be 18 and give their own consent.
Nicole
OK.
Shiraz
Yeah, so my daughter is 9. Will be 9 next month and so.
Nicole
How was navigating your cancer diagnosis with having two young children?
Shiraz
It was very challenging. And I think I think what made it as challenging as it was was COVID thrown into the mix.
I was very, I was very conscious to be as transparent as I could be with them about it. That's not the way it was when I was growing up and my mum had cancer. I feel like everything was kind of hush hush. And kids are very receptive whether you think they're paying attention or not, but they can be zoned out staring at the iPad. And all of a sudden, I say something to my husband and their eyes and ears you know, just perk up, yeah? I didn't want to hide anything from them.
But I never used the word cancer. And I made a conscious decision not to use that word because, again. If my daughter is 8 year old mind. The only association she has to someone with cancer is Terry Fox, who she learned about in school. And again, Terry Fox unfortunately passed away from cancer. So I I have not to this day used that word on purpose. However, I will one day when I'm far away enough from it and things are really good. Normal things are back to our normal. I want to say I will I will sit with her and talk to her about it because I do also want her to know that cancer does not equal death for sure no more.
Yeah, so yes, going back to to navigating it. Unfortunately, because of COVID, we were very careful and and we really stuck to our own bubble of four. And so they were at at home for schooling. I kept school so she was doing her online. I kept my son home from daycare because I just couldn't risk getting sick. And so they really had no break from it. they saw it all the time. They didn't get that chance for a few hours in the day to just have a normal day and play with other kids. And so I really felt for them. In that regards, but otherwise I just tried to be really open about it like when I knew that I was going to be losing my hair. You know, I kind of made a joke out of it and said, you know I, I sat them down and I said, you know Mummy is going to be the doctors have to give Mommy some medicine and the medicine is going to make mummies hair fall out, isn't that funny? They thought it was hilarious and so after I came back from my first chemo I remember this very vividly. My son literally pulled on my hair and he said, how come it's not coming out yet, and so they thought it was instantaneous. But yeah, it was very very conscious to to kind of prep them. Give them a heads up about what will happen to the best of my ability. I I didn't even know what was going to happen when I first went in for chemo so you know I had seen it, I had seen my mum go through it. But to go through it yourself is different.
Nicole
Well we really appreciate you coming today and being so open and so vulnerable, and sharing your story with us and and you know in this your messaging lives on in the podcast, and I think it's really important and I hope it helps others you know who are curious about getting tested or you know on that path to try and get their own testing if it'll provide them some support or some education to help them on that journey. So thank you so much for joining us Shiraz. We really appreciate it.
You know wish you all the best.
Shiraz
No problem, thanks.
Thank you very much.
Outro
Thanks for joining us on the GOSH podcast. To learn more about the Gynecologic Cancer initiative and our podcast, make sure to check out our website at gynecancerinitiative.ca