Stage 4 in Australia.

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Markdale
Posts: 13
Joined: Wed Dec 02, 2020 4:45 pm

Stage 4 in Australia.

Postby Markdale » Wed Dec 02, 2020 5:59 pm

Hello,
I’ve lurking in the forums reading every ones posts for the last 2 months. It’s really gave me some hope to see the late stage 3 and stage 4 survivors. From reading the studies I’ve found on google and the survival stats for stage 4 it didn’t give me much hope for a long future.

About me I was diagnosed in September with stage4 rectal cancer(t3n2m1) with a1.2cm lung nodule in the right lower lung that had some uptake during pet scan. There were also 3 smaller nodule in the right upper lobe of the lung less than 5mm.

I had a low anterior resection in October with good clear margins. I’ve just started the folfoxiri regimen which will be 12 cycles. I’m still waiting on thoracic surgeons to see whether they will cut that met out.

From reading the posts it seems the Americans are much more aggressive in treating stage 4 than countries like Australia that have the universal health care.

Just want some advice on what it’s been like for those in Australia or else where to get surgical treatment for metastasis in the public system.

Mark dale
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in right lower lobe (1X1.2cm) and right upper lobe (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4 lymph nodes positive of 24. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: began folfoxiri..
12/20: ct lung biopsy of lung nodule to confirm metastasis

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 in Australia.

Postby stu » Thu Dec 03, 2020 3:05 am

Hi ,

Glad you joined in the discussion.

We are a public health country too! Whilst it does not offer the same range it has still got quite a few treatments on offer and accessible too!

My mum had a lung met removed back in 2016! It was by far the most straightforward of all her resections and the quickest recovery . One hour in theatre, one hour in recovery to ensure her lung inflated . One night in High dependency , one night on a ward and one hour to get home !!!

She never looked back . She has since that time two nodules but they never grow or have uptake . They just sit there !

In the back of my mind I was a bit worried about options but had a back up plan with laser treatment in Germany . You can use the search function here as I think it was someone from Australia who set up the thread . That was my insurance policy of the public system was not enough . But it does not sound as though it’s necessary. If your like me though you rest better with a potential back up plan tucked away somewhere in your mind .

All the best with your treatment,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Markdale
Posts: 13
Joined: Wed Dec 02, 2020 4:45 pm

Re: Stage 4 in Australia.

Postby Markdale » Thu Dec 03, 2020 5:23 am

Thanks Stu,

Hope it didn’t sound like I was knocking the health system over there. The system here as far as I’ve experienced and read doesn’t treat stage 4 as aggressively as others. Ive read a lot of your posts, you’ve posted a lot of helpful info.

Mark
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in right lower lobe (1X1.2cm) and right upper lobe (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4 lymph nodes positive of 24. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: began folfoxiri..
12/20: ct lung biopsy of lung nodule to confirm metastasis

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 in Australia.

Postby stu » Thu Dec 03, 2020 4:34 pm

Oh no , don’t be worrying about that . Over the years we have had some good debates about the pros and cons of both . In reality you have the system of the place where you live and good to get it to work for you as best you can . But like you I explored every option to ensure what was available was used to maximum benefit .

We did have to seek out other opinions to get to more aggressive surgeons and had to get our elbows out and advocate quite a bit .
What I would say in the last 3 to 5 years I have seen a big , big change and surgeons and oncologist are become much more proactive .
Hope it’s happening for you too.

People before us reached out and made a difficult journey a lot easier . We have to do the same for others .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rock_Robster
Posts: 529
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Stage 4 in Australia.

Postby Rock_Robster » Thu Dec 03, 2020 4:42 pm

Hey Markdale, stage IV in Melbourne here. I was very lucky to have amazing, aggressive treatment from the start, and so far I’ve had a very good outcome. Unfortunately you’re right though that I’ve heard of others where this hasn’t always been the case (especially through public oncology, and in regional areas). I ended up seeing a private oncologist, but having my radiation and surgeries in major public hospitals as a private patient of the surgeon (a confusing sentence but Aussies should get it!). Let me know if you need any tips or suggestions.

Best of luck,
Rob
Last edited by Rock_Robster on Fri Dec 04, 2020 5:28 am, edited 1 time in total.
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI) - latest Dec 2020
07/20 Clear scope

Markdale
Posts: 13
Joined: Wed Dec 02, 2020 4:45 pm

Re: Stage 4 in Australia.

Postby Markdale » Thu Dec 03, 2020 6:08 pm

Thanks rob. I completely get the private in public. I was was lucky with the colorectal surgeon I got who got me in the theatre within a month and convinced me that there was a chance of cure, not to mention his skill (I was able to avoid an ileostomy). But since I’ve been talking to to the oncs they seem to prefer conservative treatment. I might have to see if I can get a referral to a thoracic surgeon to have a chat.

Anyway it’s good to see you’re currently NED, I think when newly diagnosed see people that are currently NED IT GIVES THEM ALOT OF HOPE.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in right lower lobe (1X1.2cm) and right upper lobe (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4 lymph nodes positive of 24. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: began folfoxiri..
12/20: ct lung biopsy of lung nodule to confirm metastasis

kiwiinoz
Posts: 1154
Joined: Thu Jan 03, 2013 11:44 pm

Re: Stage 4 in Australia.

Postby kiwiinoz » Thu Dec 03, 2020 8:01 pm

Hi Mark

Another Aussie here. I am based in Sydney in the Eastern Suburbs so had a fair amount of choices in terms of hospital care.
I was diagnosed with 2 rectal tumours and one lung tumour so fell into that exclusive Stage IV club that I bet you don't want to be in!
I went via the public system and I don't know why you say we are not aggressive compared to the Yanks for example? I guess it depends on your personal circumstances and the oncologist you met. But like you, I certainly considered myself as an option for curative intent. I had my bowel resection in the private system which was paid for by my private health care (Medibank Private) but the same surgeon performed the surgery in the same hospital in both public and private wards. I then was able to meet my "Prof" who was a great oncologist and had a huge amount of experience, and he also, after a PET scan and review of my case considered me curable. I had a lung resection. If I went public I would have got the best surgeon's assistant. I chose, to go private and paid to get him. I got zero margin, under went 6 months of FOLFOX Chemo and then I have been "cured" since them so it is certainly doable.

I think it depends a lot on who you meet via the public health system. If you are not happy, then you should consider changing hospitals for better care as you have access to one of the best health systems in the world (Medicare) in Australia. I grew up in NZ so I have seen both, and I think that the Australian system is awesome. I fall in to the top tax bracket and I pay a medicare levy surcharge, and I am happy to pay every cent of it.

The research that I did would suggest that you have a good chance at curative surgeory so you need to get someone to look at your case.

Where are you based? I went to Prince of Wales Hospital in Randwick and my oncologist was Professor David Goldstein and my thoracic surgeon was Dr Wolfenden.

Let me know how you go.

Kiwi (in OZ)
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

User avatar
Maggie Nell
Posts: 1143
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Stage 4 in Australia.

Postby Maggie Nell » Thu Dec 03, 2020 8:54 pm

G'day Mark

Another Aussie here. I recently moved from Melbourne (where I was diagnosed and had my
surgery at Sandringham Hospital) into the Central Highlands of Victoria which brings with
it new doctors and the whole she-bang. Have yet to check out B.R.I.C.C.
Less choices here in one sense yet the facilities may be better. Dunno yet.

Have you touched base with Bowel Cancer Australia and the relevant mobs in your state?
My experience has been, since from my first brush with a cancer back in 1985, is that the medicos here
are not as familiar with patients being informed and acting strongly in advocacy of their own treatment.
Luck of the draw with the oncologist that you are allocated within the Public Health System and you can
feel obliged to not request a change of oncologist if there's no rapport. That could be the natural reticence
of your average aussie anglo-saxon character. Generations of us were all raised to not rock the boat.

Cheers,
Maggie Nell
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX

Sorbitol is the Devil
Ordained Dudeist Priest at Dudeism, the Church of the Latter-Day Dude 8)

roadrunner
Posts: 90
Joined: Sun Jan 12, 2020 8:46 pm

Re: Stage 4 in Australia.

Postby roadrunner » Thu Dec 03, 2020 9:24 pm

Not an Aussie, but I had occasion to look into lung mets because I have had a number of small things turn up on scans from time to time (turned out to be stable and therefore probably benign). I would suggest an aggressive approach on your part given what you report and your impression of your oncologists. In other words, don’t take no for an answer until and unless it’s the only answer you ever get. If it’s one met that can be addressed with VATS or radiation, your odds go way up. You have multiple potential mets, but the smaller ones may well be nothing (my oncologists say “if you scan anyone . . .”), even in a Stage 4 patient. I agree with others who have said the approach is changing, but I am sure that there are many oncologists “stuck in the [conservative] past” on this one, and my take would be to pursue a curative option until and unless it’s clear that’s not available, anywhere. If you’ve the stomach for it, Google might be your friend here if you’re ok finding and reading dense studies on outcomes and are ok with the information itself (some don’t like reading about this stuff).
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Rock_Robster
Posts: 529
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Stage 4 in Australia.

Postby Rock_Robster » Fri Dec 04, 2020 5:32 am

Mark, just to add to the above... it’s sounding like you’re in a pretty hopeful position right now, which is fantastic. Where are you based? I’d definitely recommend seeing a top thoracic surgeon about the lung stuff, and if this doesn’t yield results let me know and I’ll put you onto a mate who runs the lung SABR program at Peter Mac.

Also it sounds like it might be time to go oncologist-shopping - at stage IV there’s no room for slackers on your team! Happy to help with some names.

Cheers
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI) - latest Dec 2020
07/20 Clear scope

Markdale
Posts: 13
Joined: Wed Dec 02, 2020 4:45 pm

Re: Stage 4 in Australia.

Postby Markdale » Fri Dec 04, 2020 6:59 am

Thanks for the reply guys. It’s good to finally discuss this with people, I’ve been keeping this pretty close and haven’t properly discussed with anyone.

I am pretty hopeful that I can reach NED, just unsure of the journey at the moment.

I spoke with the onc today and he said the thoracic surgeons want to biopsy the lung nodule before they cut it out doing it under CT GUIDENCE. I questioned why considering it lit up during the pet scan and he said they want to be sure it is a met because it is not on the periphery and it will most likely be a segmentectomy or lobectomy rather than a wedge resection. Do you guys know of any people who have had false positive pet scans?

I will take you up on the offer rob, I will very much appreciate it. I’m located in Melbourne too. I had my surgery done at the Dandenong hospital they have a good reputation for colorectal surgery just not sure how their thoracic surgery is.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in right lower lobe (1X1.2cm) and right upper lobe (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4 lymph nodes positive of 24. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: began folfoxiri..
12/20: ct lung biopsy of lung nodule to confirm metastasis

Markdale
Posts: 13
Joined: Wed Dec 02, 2020 4:45 pm

Re: Stage 4 in Australia.

Postby Markdale » Fri Dec 04, 2020 7:14 am

After reading through so many posts on the forum it’s strange to see so many people in there 30s diagnosed with colorectal cancer. I understand that I’m in a forum for colorectalcancer but I wasn’t expecting so many people around my age. I had always thought of it as a cancer you get when you are much older. Also it seems so many healthy people are getting struck down by this disease. I read that it is becoming increasing common for younger people to get it but I havnt been able to find any literature for why. I’d like to know what you guys think of this or if you’ve found any interesting articles.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in right lower lobe (1X1.2cm) and right upper lobe (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4 lymph nodes positive of 24. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: began folfoxiri..
12/20: ct lung biopsy of lung nodule to confirm metastasis

boxhill
Posts: 662
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 4 in Australia.

Postby boxhill » Fri Dec 04, 2020 9:14 am

Plenty of people here in the US have to be personally aggressive in order to find a doctor who will support treatment aimed at getting the patient to NED. And everywhere there are doctors who appreciate a well-informed, participatory patient and those who don't.

In addition, many of us face the possibility of medical bankruptcy.

You tend not to hear from the patients who simply accept less aggressive care in a forum like this one. Even so, you'll notice that encouraging people to advocate for themselves is a major theme! :)

Best of luck to you. (BTW, I had one of those little benign lung things that are so common the first time they looked. AFAIK, it's still there. They no longer bother to look at it. I hope your little ones are the same.)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

roadrunner
Posts: 90
Joined: Sun Jan 12, 2020 8:46 pm

Re: Stage 4 in Australia.

Postby roadrunner » Fri Dec 04, 2020 4:47 pm

I think the reason that it’s hard to find answers to your question is because it’s still a mystery despite the clear trend. I have seen information indicating that the increase in CRC in younger people, in the States at least, is centered in non-obese, non-Hispanic Whites. I have seen speculation running from “early-in-life exposures” (to what, no one appears to know) to “changes in the gut microbiome.” Another interesting angle is that the standard of care (at least in RC, which is closest to my heart, well not really my heart per se, but you get what I mean . . .) was designed around older folks, who are often less active, often not working, etc. It’s something to remain aware of going forward. Doctors tend to look at things through symptoms, test results, performance scores, and percentages, but we as patients have to stay alert to our unique circumstances, goals, life conditions, hopes, and fears as well. Younger people look at things differently than older folks do, for sure. Not saying that advocates for any specific different approach, but just that sitting back and strategizing on your own terms after you’ve listened to your doctors seems to me the right thing to do.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Rock_Robster
Posts: 529
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Stage 4 in Australia.

Postby Rock_Robster » Sat Dec 05, 2020 2:37 am

Hey Mark, ok, makes sense. Given you’re in Melbourne I can perhaps be a bit more help now.

Sounds like you’ve had good care there at Dandenong. But if you’re considering looking further (noting Dandy don’t seem to have a dedicated thoracic service), given your staging (like mine), I’d strongly recommend getting into the Victorian Comprehensive Cancer Centre (VCCC) alliance of hospitals, and seeing some of the more senior staff there. My A-Team would be:

*Oncology:
Private: Prof Peter Gibbs (Melbourne Private, Western Health; research division head at WEHI). Both my onc and a genius :)
Public: A/Prof Jeanne Tie (Peter Mac, Western Health)

*Thoracic surgery:
Mr Phillip Antippa (Peter Mac; RMH - head of the lung tumour stream)

*Radiation therapy:
SABR/SBRT: A/Prof Shankar Siva (Peter Mac, Epworth - head of the SABR practice)
Other: Prof Trevor Leong (head of radiation oncology)

On the other stuff, the rate of CRC in under-50s is steadily rising, and no idea why. If you’d like to contribute to research, just contact Prof. Ingrid Winship at Royal Melbourne Hospital / Melb Uni and sign up for the ANGELS study into early-onset colorectal cancer.

Also there’s a lot of selection bias here - as mentioned this group tends to be more aggressive toward treatment, and being a web forum is naturally going to be younger on average.

Keep in touch!
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI) - latest Dec 2020
07/20 Clear scope


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