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Speaker 1: You're listening to a podcast from News Talk zed Be

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Speaker 1: follow this and our Wide Ranger podcasts now on iHeartRadio.

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Speaker 2: So back in April, we were talking about the cost

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Speaker 2: of funerals. A great New Zealander called Tom. He called

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Speaker 2: in and he's back with us today.

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Speaker 3: Tom, get a to you go man Tyler. How are

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Speaker 3: you lads?

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Speaker 4: Fantastic one of the most popular callers to our show.

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Speaker 4: We were talking about planning funerals and you rang and

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Speaker 4: and said you were planning your own funeral, which should

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Speaker 4: have knocked us from six, but your attitude was phenomenal

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Speaker 4: and as a result we got about one thousand texts

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Speaker 4: on the back of it. So it's so good to

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Speaker 4: have you back on the show to chat. Now, Tom

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Speaker 4: tell us about your condition and when you were diagnosed

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Speaker 4: and how you were diagnosed.

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Speaker 3: Well, thank you so much for this opportunity. It really

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Speaker 3: does mean a lot to me. So I was diagnosed

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Speaker 3: with a very rare type of cancer called a sarcoma

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Speaker 3: back in February nineteen nineteen twoenty twenty two, so amazing

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Speaker 3: and at the time, of course, my diagnosis was a

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Speaker 3: stage four cancer. So it was started in my small

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Speaker 3: bowel thing and it already metestasized to my liver, so

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Speaker 3: the outcome didn't look great. So you go through a

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Speaker 3: period of time where you know what's there, but you

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Speaker 3: don't know what it is. And then I got told

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Speaker 3: of I had this rare sarcoma known as JUST, and

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Speaker 3: I'm a bit of a researcher by nature, so I

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Speaker 3: jumped on and I was looking for as much information

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Speaker 3: as I could find out about JUST. And some of

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Speaker 3: it as good stuff. I mean, you can live a

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Speaker 3: reasonably well and long and healthy life with JUST if

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Speaker 3: you get the right treatments and you get it early.

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Speaker 3: But what I found was that there was not a

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Speaker 3: lot of information available that was New Zealand relevant. So

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Speaker 3: you could get support groups online, and there were other

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Speaker 3: foundations Australia, America mainly where where there was a lot

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Speaker 3: of information, but you would often get directed to go

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Speaker 3: and look at a drug trial here or there, or

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Speaker 3: you know, Sloan Keddering in New York and because none

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Speaker 3: of that's really available. So what I'm ringing today is

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Speaker 3: that since my diagnosis, there's been too wonderful on cologists

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Speaker 3: in Auckland. Andrew and Joanna have established the Sarcoma Foundation,

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Speaker 3: which is a small charity that's aimed at at supplying

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Speaker 3: information two people like me that is New Zealand relevant

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Speaker 3: if you like, what treatments are available for us here,

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Speaker 3: what we can expect to get, what is funded, what isn't.

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Speaker 3: Sarcoma makes up only one percent were just over of

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Speaker 3: all cancers each year, so there's only several hundred people

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Speaker 3: a year. So because there's so few people with these

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Speaker 3: rare cancers, we do tend to fall between the cracks

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Speaker 3: when it comes to not just access to drug trials,

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Speaker 3: just connection with other people. You know, what the foundation

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Speaker 3: and for me means is that there's a place there

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Speaker 3: where we can go. Because it's a very personal journey

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Speaker 3: living with a terminal illness. It's very hard to describe,

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Speaker 3: to be honest, I think I watched a documentary done

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Speaker 3: by Die Henwood where he described his journey and he's

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Speaker 3: so right. We said in one part there were it

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Speaker 3: actually occupies ninety five percent of your thoughts every day,

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Speaker 3: that's all you really think about. And to be able

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Speaker 3: to connect with other people that are going through the

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Speaker 3: same thing as very cathartic. I guess I could say,

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Speaker 3: you know, that's another benefit I think that the Sarcoma

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Speaker 3: Foundation will offer. My journey would have been a lot

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Speaker 3: less stressful in the beginning had I been able to

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Speaker 3: tap into a resource like the Sarcona Foundation. And then

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Speaker 3: you know, people feel they could maybe jump onto the

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Speaker 3: Sarcoma website and they're just making a little seven dollar

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Speaker 3: donation for the seventh month. Every little bit helps. I mean,

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Speaker 3: I'm kind of in the final stages now. I've gone

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Speaker 3: through the funded medications. You know, I had funded to

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Speaker 3: a point some medication, but they all failed. So yeah,

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Speaker 3: you know, if anyone understood the planning's all done on

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Speaker 3: a fundal We've got it all sorted. Now. We're just

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Speaker 3: still carrying on. You know. I still come to work

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Speaker 3: pretty much every day because I think that's very important

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Speaker 3: where you can just for your own mental health and

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Speaker 3: your own well being to be able to just keep

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Speaker 3: doing stuff sitting back and what do you sit at

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Speaker 3: home and think about?

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Speaker 4: Well, I was thinking about that, actually, Tom. You know,

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Speaker 4: your response to something most of us could can't get

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Speaker 4: our heads around. From the position we're in, it's been

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Speaker 4: and our interaction has been so sort of full of

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Speaker 4: warmth and humor towards your condition. So you know, you

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Speaker 4: say that you've kept working, and what other ways have

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Speaker 4: you managed to cope mentally?

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Speaker 3: Well, I've always been very open and honest with people

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Speaker 3: about where I'm at and what I'm going through. So

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Speaker 3: what I've found that I've with all my friends and

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Speaker 3: family just by always being open and honest with them

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Speaker 3: and telling them where I'm at, and people that I've

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Speaker 3: established relationships within my work life as well. It sort

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Speaker 3: of lessens the burden for me because I've shared it

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Speaker 3: so much. But it's also if we gather somewhere, it's

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Speaker 3: not like the elephant in the room that no one

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Speaker 3: wants to talk about. Everybody knows about it, and for me,

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Speaker 3: as we're sort of getting closer to that end, I

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Speaker 3: know that they've got each other as well.

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Speaker 5: Well.

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Speaker 3: That eases my mind a little bit because it's such

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Speaker 3: a mental battle.

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Speaker 4: Tom As I said before, you're one of the most

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Speaker 4: popular callers to our show when you rang in with

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Speaker 4: with the humor that you did, and you're an aspiring guy.

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Speaker 4: Think thanks so much for talking to us and absolutely

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Speaker 4: all the best you made people like you whose instincts

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Speaker 4: in the face of just unimaginably huge things. When your

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Speaker 4: instincts to help others, it's I find it really humbling

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Speaker 4: for the rest of us, and it's it's an amazingly

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Speaker 4: beautiful thing. So it's it's been great to chat to

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Speaker 4: you again, mate.

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Speaker 3: Well, thank you, Matt. That's equally humbling for me to

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Speaker 3: have you say that. So I'll just go back to

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Speaker 3: sitting here and swearing at you guys.

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Speaker 4: Please, we love it, we deserve it.

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Speaker 3: Yeah right, yeah, look, I just I just hope that

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Speaker 3: this little chat, you know, raises a bit more awareness

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Speaker 3: for the Foundation and the wonderful work that Andrew and

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Speaker 3: Joanna are doing.

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Speaker 2: Yeah, well, Tom, thank you very much again, mate. We

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Speaker 2: love you, and hopefully we chet again soon. A.

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Speaker 3: Yeah, well, next time I'd come in and give me

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Speaker 3: some cake or something.

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Speaker 2: We can do that.

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Speaker 3: What's your favorite cake made? Anything?

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Speaker 4: Anything?

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Speaker 5: All right?

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Speaker 4: Matt's pretty good baker. No, Tyler will bake you a

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Speaker 4: banana cake. I'll have to get h Yeah, here we go.

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Speaker 2: I feel sorry for you now, Tom. Anyway you're gonna

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Speaker 2: eat my cake?

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Speaker 3: Thanks?

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Speaker 2: All right, mate, Chad, soon see you, Tom.

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Speaker 4: That is Tom.

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Speaker 2: What an absolute great New Zealand theer it is news

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Speaker 2: talks here, but you're listening to Matt and Tyler Beggary shortly,

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Speaker 2: how do we donate again? Sarcoma dot org dot in

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Speaker 2: ZI seven bucks.

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Speaker 4: Yep. They're good people.

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Speaker 1: The big stories, the big issues, the big trends and

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Speaker 1: everything in between. Matt Heath and Tyler Adams afternoons used talks.

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Speaker 2: It'd be doctor Joanna Connor as a UK trained medical

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Speaker 2: oncologer specializing in sarcoma and breast cancers and as tumor

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Speaker 2: lead for Sarcoma at the Auckland Regional Cancer and Blood Service.

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Speaker 2: She is a founding member of Sarcoma New Zealand and

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Speaker 2: being Sarcoma a week in us Muth she joins us now,

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Speaker 2: doctor Connor, very good afternoon.

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Speaker 5: Thank you.

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Speaker 4: Now for those of us that are unaware, what exactly

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Speaker 4: is sarcoma, Yeah.

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Speaker 5: So sarcoma is it's a word for tumors. So they

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Speaker 5: can be cancerous or benign of the supportive tissues of

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Speaker 5: our body, so that can be that muscle bone. And

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Speaker 5: actually they can occur anywhere in the body at any age,

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Speaker 5: and they're usually very rare cancers, which is why many

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Speaker 5: people might not have heard of that term.

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Speaker 4: Before, so it's a variety of cancers.

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Speaker 5: Yes, this sarcoma is the umbrella term, and within that

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Speaker 5: there's actually many different types of sarcoma, right.

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Speaker 4: And how many people are affected in New Zealand a year.

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Speaker 5: Several hundred people per year and of course some people

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Speaker 5: some sarcoma's there might only be one per year even

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Speaker 5: but for some of the more common types of sarcoma

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Speaker 5: we might get sort of fifty to one hundred throughout.

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Speaker 4: Altiro are the symptoms that people need to watch out for,

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Speaker 4: so this is.

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Speaker 5: This is one of the challenges of sarcoma because they

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Speaker 5: can occur anywhere in the body. They can present actually

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Speaker 5: in many different ways. For sarcomas that might present on

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Speaker 5: the extremity, so our arms or our legs, that might

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Speaker 5: be in the formers of lump bump or even bone

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Speaker 5: pain particular at night that comes. For sarcomas that are

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Speaker 5: in the tummy, that can be more problematic because they

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Speaker 5: can be very vague, just general sort of fullness, discomfort,

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Speaker 5: maybe even some vomiting. So there's no one clear symptom,

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Speaker 5: but there's usually a collection of abnormal symptoms and we

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Speaker 5: usually say look, if you're getting some symptoms that aren't

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Speaker 5: quite right, go and get them checked out. That's one

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Speaker 5: of the most important things for those that.

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Speaker 2: Are diagnosed, Joanna. Are there hurdles that they may face

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Speaker 2: in getting treatment or what are the challenges that those

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Speaker 2: diagnosed can come across.

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Speaker 5: Well, there's a couple of main challenges. Is the first

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Speaker 5: challenge is getting the right diagnosis. And we know that

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Speaker 5: the path to diagnosis can often be long, and that's

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Speaker 5: because they're rare. We're not always in the community, we're

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Speaker 5: not always expecting it to be a sarcoma, and so

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Speaker 5: often we hear about people being having lots of different

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Speaker 5: investigations over a long period of time. And then really

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Speaker 5: importantly the diagnosis pathway is that those once we've got

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Speaker 5: a biopsy that has to be reviewed by a sarcoma

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Speaker 5: specialist because we know sometimes they're so rare that we

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Speaker 5: need the right people to look at those, so that

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Speaker 5: time to diagnosis can actually be really long and a

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Speaker 5: really challenging journey for people. And then I think the

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Speaker 5: second challenge is what is sarcoma? What am I living

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Speaker 5: with or what's my treatment plan? And feeling quite alone

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Speaker 5: because it's so rare.

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Speaker 4: If you have concerns and nothing is being found, but

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Speaker 4: this discomfortable one of these symptoms that you're talking about continues,

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Speaker 4: how do you just keep going with it? How do

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Speaker 4: you keep asking for more tests.

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Speaker 5: One of the really good things is that Sarcoma Foundation

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Speaker 5: New Zealand has some advice for healthcare professionals. And what

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Speaker 5: we found is that that advice can really empower patients

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Speaker 5: to advocate for themselves if they feel like they're not

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Speaker 5: getting the right workup. And there's some really good criteria

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Speaker 5: about what needs investigations, so imaging, what that might need,

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Speaker 5: an ultrasound, etc. And X ray and there's a really

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Speaker 5: clear referral pathway to get onto the right track. So

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Speaker 5: we hope that the information from the Arkoma Foundation can

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Speaker 5: help empower patients to advocate for themselves, you know, to

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Speaker 5: getting that workup that they need.

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Speaker 4: Is there a point where you, like, as a doctor,

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Speaker 4: you can go you definitely don't have this, You've got

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Speaker 4: the symptoms, but we can rule this out. You see

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Speaker 4: what I'm getting at. Because people feel like they have

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Speaker 4: something and you can go on this journey and investigation investigation.

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Speaker 4: Is there a point where you can just go, look,

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Speaker 4: you're clear. This isn't the thing that you need to

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Speaker 4: worry about.

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Speaker 5: Yeah. Absolutely, And although we're talking about sarcoma today, I

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Speaker 5: think reassuring word from me would be that most of

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Speaker 5: the time these lumps on bumps are not sarcoma's. You know,

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Speaker 5: these are really rare, but unless you get them worked up,

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Speaker 5: we just need that reassurance. And usually that might be

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Speaker 5: a simple scam or an X ray, or for some

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Speaker 5: people they might need a biopsy. But usually one of

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Speaker 5: those two things is the key. A reassuring imaging or

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Speaker 5: a clear biopsy.

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Speaker 4: We're talking to doctor Joanna Connor, founding member of this

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Speaker 4: of Sarcoma and New Zealand. So once you've been diagnosed,

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Speaker 4: what sort of treatments are available?

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Speaker 5: A whole bunch of treatments depending on the type of

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Speaker 5: sarcoma that has been diagnosed. Usually surgery is the cornerstone

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Speaker 5: of treatment. Most sarcomas need surgery to remove. There are

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Speaker 5: some sarcomas, however, that need some treatment before we get

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Speaker 5: to that surgery, so that might be for some people

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Speaker 5: radiation treatment or even some chemotherapy, or even a combination

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Speaker 5: of both. But your treatment plan would be recommended by

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Speaker 5: a specialist Socoma team.

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Speaker 2: So for people listening at the moment Joanna and they

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Speaker 2: might be a bit worried, or for those who are

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Speaker 2: going through the journey, what would be your message to

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Speaker 2: those people?

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Speaker 5: I think you're not alone. So it can feel immensely isolating,

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Speaker 5: but go to the website. There's lots of resources for

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Speaker 5: people in New Zealand affected by sarcoma and the family

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Speaker 5: as as well. And look, talk to us, you know,

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Speaker 5: if you're not sure, talk to us, particularly through Socoma

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Speaker 5: Foundation New Zealand. We can help make sure you're orientated

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Speaker 5: on the right path. Where the charities we're not your

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Speaker 5: treating team, but we can help advocate for you.

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Speaker 4: How are you guys funded and how can people donate?

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Speaker 5: So we're a charity, so we're very new in the

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Speaker 5: first couple of years have been launched to the public,

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Speaker 5: so we're welcoming all donations to keep us running and

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Speaker 5: one of the goals this year is to start up

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Speaker 5: a support network for patients and consumers across our.

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Speaker 4: Heroa and so how directly can they donate?

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Speaker 5: So go to Socoma dot org dot Z and they

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Speaker 5: can donate through.

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Speaker 4: Our website sarcoma dot org dot ZID perfect.

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Speaker 2: Yeah, doctor, really great to chat with you. Keep up

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Speaker 2: the good work and we'll catch up again soon hopefully.

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Speaker 5: Thanks so much.

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Speaker 2: That is doctor Joanna Connor. She's a UK trained medical

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Speaker 2: oncologist and a founding member of Sarcoma New Zealand.

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Speaker 1: For more from News Talk ZB, listen live on air

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Speaker 1: or online, and keep our shows with you wherever you

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