Stage 4 in Australia.

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

Re: Stage 4 in Australia.

Postby Markdale » Sat Dec 05, 2020 10:36 pm

Thank you everyone, I appreciate the responses.

Thanks for the names rob, I will try and contact them after I rescan and feel the treatment has plateaued.

I will continue to update and read the forums. This forum is great.

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

michelle c
Posts: 1911
Joined: Wed Dec 02, 2009 3:58 am

Re: Stage 4 in Australia.

Postby michelle c » Sun Dec 06, 2020 7:24 am

Hi there,

I don’t agree that treatment in the US is more aggressive than Australia. It depends on a lot of factors including doctors and even patients seeking alternative options. Our healthcare in Australia is excellent and doctors/oncologists follow recommended treatments and are up with the latest ones.

I was treated as a private patient due to having private health care. I was so glad I had it as I was able to choose my surgeon, oncologist, hospital and treatment days etc. The public system is very good but I probably would have had to wait a little longer and not really had a choice for my surgeon, oncologist, hospital and treatment days. However, I feel the treatment would be the same.

Ask for a referral to a thoracic surgeon. Surgery is probably the best option for curative intent. Wishing you the best.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

User avatar
wwroam
Posts: 763
Joined: Sun Apr 06, 2008 8:13 pm
Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
Contact:

Re: Stage 4 in Australia.

Postby wwroam » Wed Dec 09, 2020 11:01 pm

All of my cancer treatment has been within the private system.
After my 2017 stage 3 NSCLC treatment I was involved in a car accident and went by ambulance to Gold Coast University Hospital and to date this has been my only experience with the public system.
The hospital was brand new so the facilities were fantastic. It appeared as though nursing staff fought to work here and they were the pick of the crop. The doctors in Trauma were appalling. They were dismissive and breezed through my room in a flash. At the least I had an L4 fracture. After 2 CT scans , an X-Ray and an MRI scan this was all I knew. And I was in a public hospital as a private patient( ie a cash cow). I found the treatment underwhelming.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

Jette
Posts: 4
Joined: Wed Jan 06, 2021 12:08 pm
Location: Australia

Re: Stage 4 in Australia.

Postby Jette » Sat Jan 09, 2021 2:55 am

Markdale wrote: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


Hi Mark!

I was just wondering how you were doing and how you went as far as surgery goes?

My sister is the same, largest lung Met 8mm, some uptake on scan and a couple of smaller mets.

They originally planned to start her with radiation to her primary tumour but after the PET and discovery of lung nodules, they went with modified folfox 6, they have said they aren’t going to biopsy the nodules, they’ll just treat them as Mets for now. So far she’s one round in.

I came here with the exact question you had and with the fear that other countries adopted a more aggressive treatment style but I’ve since noticed Australians generally make up a smaller portion of most of these forums and groups so we’re not seeing the full range of diagnosis and treatment used.

I’ve discovered, on my quest for information, that a few of the major cancer centres in the US actually offer a remote second opinion service..handy if you wanted to make sure your treatment is inline with what they’d recommend.

I tend to agree with other comments though, with research, pushing and certainly not taking no for an answer.

Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: Stage 4 in Australia.

Postby Jess83 » Sat Jan 09, 2021 2:56 pm

Hi Mark,
I’m in Australia too (Victoria) and have often wondered about the treatment level we receive here compared to the US.
I have only just been diagnosed with probable Stage 4, but so far my treatment seems aggressive as the think they can cure me.
Originally they thought I was Stage 3 but the PET scan showed a possible met on my adrenal gland.
The plan was to start FOLFOX straight away but they were then able to get me into a specialist surgeon to remove the adrenal gland and the tumor (I just had this done Friday)
They have told me that they will throw everything at this as they believe that as it’s only one met and I have a very good chance of cure.
I really think it depends on the doctors/surgeon.
I’m also in the private system so not sure if that makes any difference.
If your not sure, I would definitely seek a second opinion.
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

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

Re: Stage 4 in Australia.

Postby Markdale » Sat Jan 09, 2021 5:05 pm

Jette wrote:
Markdale wrote: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


Hi Mark!

I was just wondering how you were doing and how you went as far as surgery goes?

My sister is the same, largest lung Met 8mm, some uptake on scan and a couple of smaller mets.

They originally planned to start her with radiation to her primary tumour but after the PET and discovery of lung nodules, they went with modified folfox 6, they have said they aren’t going to biopsy the nodules, they’ll just treat them as Mets for now. So far she’s one round in.

I came here with the exact question you had and with the fear that other countries adopted a more aggressive treatment style but I’ve since noticed Australians generally make up a smaller portion of most of these forums and groups so we’re not seeing the full range of diagnosis and treatment used.

I’ve discovered, on my quest for information, that a few of the major cancer centres in the US actually offer a remote second opinion service..handy if you wanted to make sure your treatment is inline with what they’d recommend.

I tend to agree with other comments though, with research, pushing and certainly not taking no for an answer.


Hi jette,

I was to have a ct guided biopsy of the lung nodule but when I went for the procedure the nodule had disappeared and there was only an empty space where it was. The other 3 nodules showed no change. I’m receiving folfoxiri and I have 2 more cycles before I have another scan.
For the primary tumour I had a low anterior resection and recovered well, I was only in hospital for 4 days. Chemo has been the hardest part but it has been tolerable.
I’m going through the public system and they seem very busy. I think with the public system here is they don’t want to perform unnecessary surgeries, which may stop them from being as aggressive as others. But they seem to be very thorough, and they have access to a wide range of specialists and services that they organise for you which makes it a bit easier for the patient.

There are a few aussies here that are very knowledgeable that have been a big help I think one of them has used the 2nd opinion service of the big American cancer centres.
Has your sister got a surgery date yet for the primary tumour? I didn’t receive radiation before the surgery so I’m unfamiliar with that part.

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

Jette
Posts: 4
Joined: Wed Jan 06, 2021 12:08 pm
Location: Australia

Re: Stage 4 in Australia.

Postby Jette » Sun Jan 10, 2021 2:41 am

Markdale wrote:Hi jette,

I was to have a ct guided biopsy of the lung nodule but when I went for the procedure the nodule had disappeared and there was only an empty space where it was. The other 3 nodules showed no change. I’m receiving folfoxiri and I have 2 more cycles before I have another scan.
For the primary tumour I had a low anterior resection and recovered well, I was only in hospital for 4 days. Chemo has been the hardest part but it has been tolerable.
I’m going through the public system and they seem very busy. I think with the public system here is they don’t want to perform unnecessary surgeries, which may stop them from being as aggressive as others. But they seem to be very thorough, and they have access to a wide range of specialists and services that they organise for you which makes it a bit easier for the patient.

There are a few aussies here that are very knowledgeable that have been a big help I think one of them has used the 2nd opinion service of the big American cancer centres.
Has your sister got a surgery date yet for the primary tumour? I didn’t receive radiation before the surgery so I’m unfamiliar with that part.

Mark


What have they said so far about the disappearing nodule? Is that a good sign? Here’s hoping it is! I’ve read good things about folfoxiri, fingers crossed your scan goes well! I suppose you won’t know what the next move is until then.

My sister is also going through the public system, as far as I’ve noticed so far there doesn’t seem to be much of a difference (we’re in WA) aside from not getting the same oncologist at each visit which could be unsettling for some.

4 days hospital for your resection is pretty good going! She has no surgery date for the primary tumour yet, I’ve noticed that varies from case to case also. I for one, would be more at ease with the primary out! Quite possibly it has to do with location of the tumour, hers is rectal. The only surgery to date has been for a colostomy and the port.

At the moment, we’re just waiting to see how the folfox6 goes, she had her second round put off by a few days because her liver enzymes were elevated-they did a scan there and then and everything was ok, enzymes came down on there own-hopefully it’s smooth running from here.

I’d been lurking for a while before I replied to your post, I’ve noticed there’s a few Australians-overall I’ve found it really helpful-there’s also a few Australian groups on Facebook and an international one specifically for stage 4. I kind of like the anonymity you get here though.

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

Re: Stage 4 in Australia.

Postby Markdale » Sun Jan 10, 2021 5:18 pm

Jette wrote:
Markdale wrote:Hi jette,

I was to have a ct guided biopsy of the lung nodule but when I went for the procedure the nodule had disappeared and there was only an empty space where it was. The other 3 nodules showed no change. I’m receiving folfoxiri and I have 2 more cycles before I have another scan.
For the primary tumour I had a low anterior resection and recovered well, I was only in hospital for 4 days. Chemo has been the hardest part but it has been tolerable.
I’m going through the public system and they seem very busy. I think with the public system here is they don’t want to perform unnecessary surgeries, which may stop them from being as aggressive as others. But they seem to be very thorough, and they have access to a wide range of specialists and services that they organise for you which makes it a bit easier for the patient.

There are a few aussies here that are very knowledgeable that have been a big help I think one of them has used the 2nd opinion service of the big American cancer centres.
Has your sister got a surgery date yet for the primary tumour? I didn’t receive radiation before the surgery so I’m unfamiliar with that part.

Mark


What have they said so far about the disappearing nodule? Is that a good sign? Here’s hoping it is! I’ve read good things about folfoxiri, fingers crossed your scan goes well! I suppose you won’t know what the next move is until then.

My sister is also going through the public system, as far as I’ve noticed so far there doesn’t seem to be much of a difference (we’re in WA) aside from not getting the same oncologist at each visit which could be unsettling for some.

4 days hospital for your resection is pretty good going! She has no surgery date for the primary tumour yet, I’ve noticed that varies from case to case also. I for one, would be more at ease with the primary out! Quite possibly it has to do with location of the tumour, hers is rectal. The only surgery to date has been for a colostomy and the port.

At the moment, we’re just waiting to see how the folfox6 goes, she had her second round put off by a few days because her liver enzymes were elevated-they did a scan there and then and everything was ok, enzymes came down on there own-hopefully it’s smooth running from here.

I’d been lurking for a while before I replied to your post, I’ve noticed there’s a few Australians-overall I’ve found it really helpful-there’s also a few Australian groups on Facebook and an international one specifically for stage 4. I kind of like the anonymity you get here though.


Is her primary tumour advanced? I thought the best practice was to get the primary out ASAP unless you’re receiving radiation. What was their reasoning for not removing the primary tumour.? After I had the port inserted my bilirubin levels were very high but came down to normal by the next blood test.

I’m hoping the nodule was never a metastasis but the onc seems to think it was. I had 3 scans in total since diagnosis and there was no change in size with those scans.

Folfoxiri is quite hard on the body but by week 2 I’m at 70% normal functioning. I havnt had the more severe side effects.
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

Jette
Posts: 4
Joined: Wed Jan 06, 2021 12:08 pm
Location: Australia

Re: Stage 4 in Australia.

Postby Jette » Thu Jan 14, 2021 1:15 am

Markdale wrote:
Jette wrote:
Markdale wrote:Hi jette,

I was to have a ct guided biopsy of the lung nodule but when I went for the procedure the nodule had disappeared and there was only an empty space where it was. The other 3 nodules showed no change. I’m receiving folfoxiri and I have 2 more cycles before I have another scan.
For the primary tumour I had a low anterior resection and recovered well, I was only in hospital for 4 days. Chemo has been the hardest part but it has been tolerable.
I’m going through the public system and they seem very busy. I think with the public system here is they don’t want to perform unnecessary surgeries, which may stop them from being as aggressive as others. But they seem to be very thorough, and they have access to a wide range of specialists and services that they organise for you which makes it a bit easier for the patient.

There are a few aussies here that are very knowledgeable that have been a big help I think one of them has used the 2nd opinion service of the big American cancer centres.
Has your sister got a surgery date yet for the primary tumour? I didn’t receive radiation before the surgery so I’m unfamiliar with that part.

Mark


What have they said so far about the disappearing nodule? Is that a good sign? Here’s hoping it is! I’ve read good things about folfoxiri, fingers crossed your scan goes well! I suppose you won’t know what the next move is until then.

My sister is also going through the public system, as far as I’ve noticed so far there doesn’t seem to be much of a difference (we’re in WA) aside from not getting the same oncologist at each visit which could be unsettling for some.

4 days hospital for your resection is pretty good going! She has no surgery date for the primary tumour yet, I’ve noticed that varies from case to case also. I for one, would be more at ease with the primary out! Quite possibly it has to do with location of the tumour, hers is rectal. The only surgery to date has been for a colostomy and the port.

At the moment, we’re just waiting to see how the folfox6 goes, she had her second round put off by a few days because her liver enzymes were elevated-they did a scan there and then and everything was ok, enzymes came down on there own-hopefully it’s smooth running from here.

I’d been lurking for a while before I replied to your post, I’ve noticed there’s a few Australians-overall I’ve found it really helpful-there’s also a few Australian groups on Facebook and an international one specifically for stage 4. I kind of like the anonymity you get here though.


Is her primary tumour advanced? I thought the best practice was to get the primary out ASAP unless you’re receiving radiation. What was their reasoning for not removing the primary tumour.? After I had the port inserted my bilirubin levels were very high but came down to normal by the next blood test.

I’m hoping the nodule was never a metastasis but the onc seems to think it was. I had 3 scans in total since diagnosis and there was no change in size with those scans.

Folfoxiri is quite hard on the body but by week 2 I’m at 70% normal functioning. I havnt had the more severe side effects.


I believe it is, yes. They were going to start of with chemo radiation but switched to chemo when the nodules were discovered. I believe the reasoning given was to shrink before surgery. I think there’s conflicting theories on when the primary tumour should be removed, I can’t find any one definitive answer so perhaps it comes down to your specialists methods, whether you’re asymptomatic or location. It’s definitely coming out though, the GI surgeon has said he’d see her soon.

Exactly the same boat with the nodules! The larger one only slightly lit up on the PET scan but because it’s 8mm they will be watching it over the next few weeks. She’s already decided that once she’s had surgery, if they tell her they’re taking the watch and wait approach then, she won’t accept that and is going to tell them she wants it out and push for surgery.

That’s great! I don’t think many people give much thought to the side effects unless they’re going through it, I know I’d never considered them. On folfox, my sister is experiencing the cold sensitivity. She was able to start the second round, bloods were good this week thankfully!


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