Thoughts on treatment approach - stage IV recurrent

Please feel free to read, share your thoughts, your stories and connect with others!
Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Wed Dec 01, 2021 11:08 pm

Hi all, bit of a long post, but appreciate any and all advice and thoughts on offer.

After resolving a mix-up with the surgeon reviewing the wrong patient’s imaging (really), it looks like what I’m dealing with now is:

1. A definite single recurrent liver lesion (30x24mm) in a difficult spot near the start of the right hepatic vein, and an avid portacaval node inside the liver
2. A suspicious celiac node outside the liver - still only 10mm but some tracer uptake
3. Four tiny indeterminate lung lesions, ~2mm or less. Not PET-avid, too small to biopsy.

#1 is resectable, but it’s a high-risk surgery as it involves removing and reconstructing the hepatic vein. The key risk is catastrophic bleeding, which for a large vessel near the heart probably results in a quick finish. I got the impression my surgeon would however do the op if #1 were the only issue. The other option to treat this lesion would SBRT radiation (with a somewhat reduced dose due to proximity to the heart). It is too close to the vessel to ablate, and IRE is no good due to surgical clips in-field.

#2 is also likely resectable. However his view is that *if* this node is metastatic, then this represents distant nodal disease which means there is likely no overall benefit to me from having liver surgery now. And certainly not enough benefit to justify a high-risk surgery. SBRT ablation on this node could also be an option.

#3 is highly indeterminate. Clearly in the setting it’s concerning, but they’re also small enough to be a lot of other things - infection, inflammation, artefacts. No way to confirm yet.

So the plan now is that the MDT radiologist is going to go through all of my past scans, and see if they can correlate this celiac node. If they can convince themselves it’s perhaps not malignant, then he is likely to recommend liver surgery now - and they’ll also grab that node to be safe. And we check the lungs again in a couple of months.

If they decide the node is positive, then it sounds unlikely he will operate now. The recommendation would likely be some systemic chemotherapy to confirm response, then either SBRT radiation on everything (liver, node, and possibly lungs), or if it was a good nodal response (ie turned PET-negative) then perhaps surgery could be back on the table. This would also give time to learn a bit more about the lungs (but risks further progression somewhere).

The other idea would be to go ahead with the surgery now even if they decide the node is positive; remove everything cancerous they can see, hope I survive the operation, and then hope for the best. If something recurs, we deal with it (surgery, ablation, SBRT or chemo). I don’t think he is likely to support this option, but I don’t mind it.

I’m talking to my oncologist again tonight, and will discuss chemo options and also start floating trials ideas.

I’m open to any and all thoughts folk have, particularly around the potential benefit of complete resection of visible disease even in the setting of potential distant nodal progression (which might suggest non-curative intent for the surgery).

Thanks as always,
Rob
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

stu
Posts: 1561
Joined: Sat Aug 17, 2013 5:46 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby stu » Thu Dec 02, 2021 2:34 am

Such hard decisions!

My mum was told she had a one in five risk of dying due her her liver operation as they removed 73% of it . Different options open to her back then and not sure if she was more of a risk taker but she always selected the pathway with curative intent. Best outcome to eliminate cancer was her only consideration. Once she made that decision she never second guessed it !
Stage 4 patients have much more complex decisions , some feel like a roll of the dice .
Do you have a leaning towards one option yourself ?
Certainly if you are more risk adverse ( which I probably would be ) you could certainly manage it with SBRT and then deal with the lungs if required . Both good plans .

However if you remove all disease just now then you only have the lungs to sort out if required which seems doable . What is your reaction to risk ? I feel for you as it was easier for my mum as there was not this middle ground of SBRT on the table for her.
One question for your team . If they use SBRT just now does it remove surgery from the table completely at a later date ?
Take care ,
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: 33
Joined: Wed Dec 02, 2020 4:45 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby Markdale » Thu Dec 02, 2021 3:24 am

These are tough choices. My thinking is you need some systemic treatment, I hate to recommend chemo but it’ll probably be worth it. If it’s possible get sabr/sbrt to the liver lesion and the node first for control then chemo for another mop up. The surgeons probably are risk averse with going in for another resection at the moment and due to your previous resections there are going to be a lot of adhesions that make it even more difficult.


Mark
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4/24 lymph nodes. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule to confirm metastasis. Biopsy unsuccessful
1/1/21 thoracotomy (unsuccessful)
2/2022 sabr to 2 lung nodules

User avatar
Rob in PA
Posts: 2017
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rob in PA » Mon Dec 06, 2021 2:52 pm

I can't imagine that liver resection would be possible with the other "things" going on....BUTT, I had liver resection and things turned out fine. I did however have lung mets a year later, butt the way I looked at it was like a game of "whack a mole", when one thing pops up, I whack it with surgery, chemo, sbrt, whatever it took until the next "thing" popped up and then we start all over again.

Don't let the liver issue get too involved that no one will even consider surgery.

Tough choice, good luck with whatever you choose.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

JulesW
Posts: 27
Joined: Thu Jun 21, 2018 1:48 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby JulesW » Mon Dec 06, 2021 6:21 pm

I had to push for surgery at MSK recently but glad I did. 3 months of Folfox could shrink the liver thing and potentially make the surgery lower risk
Wishing you the best
46 rectal ca. 12/16
LAR 1/17, 0/30 nodes +
5fu x 6 mos
CT 6/18 - 4 nodules R lung + 3 spots in left lung (largest 1.2cm)
6/18 folfiri + Avastin
Laser assist pulm. metastectomy B Germany 10/18 and 11/18- 10 nodules removed, 6 cancer
12/18 blood in urine -> rectal ca met on bladder
3/19 partial cystectomy
4/19 MSK self referral
Avastin + 5fu x 6 mos
3/21 blood in urine ->bladder recurrence + R ext iliac node
3 months folfox
10/21 MSK partial cystectomy with B pelvic LN dissection
got margins!

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Mon Dec 06, 2021 11:51 pm

Thanks all for the thoughts so far - some very good points to consider.

I’m seeing the surgeon again tomorrow, but I did speak with my oncologist last Friday at some length. Somewhat surprisingly his view is that he would not be recommending more chemo now. He believes that now is the time to be very aggressive, and I should be doing everything possible to get to surgery again now. If this is too risky, then SBRT radiation on everything could be a very viable plan B. His main concern is that I am fairly heavily pre-treated (FOLFOX, FOLFOXIRI and FOLFIRI - although all were >2 years ago and I didn’t progress on any lines), and in addition to the unavoidable delay, the risk of progression on chemo is quite high which could cause me to miss a narrow surgical window which might be open. We left adjuvant/maintenance chemo after surgery on the table to discuss later. He didn’t quite tell me to go surgeon-shopping, but heavily implied that if this guy thought it was technically possible then it’s likely I’d find someone willing to do it.

Will see what the surgeon thinks of this, and will let you guys know more when I do.

Cheers,
Rob

PS: I have to say I’m very influenced by my oncologist - he’s done a great job of balancing risk & reward to keep me alive for over 3 years so far (and NED for 2), and he’s a professor and research lab head / PI for colorectal cancer trials at a national centre here - just in case you guys were worried I had a lazy onc :) .
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

User avatar
Rob in PA
Posts: 2017
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rob in PA » Tue Dec 07, 2021 6:14 am

That's great that you have an onc that is not just concerned about pushing chemo on you. If you have a small surgical window, I would take it.

I've always been told from day 1 that surgery trumps chemo and radiation every time when the option cards are laid on the table.

It sounds like you've got a great doc and supporting team working with you so i'm confident they'll help you make the best decision.

PLUS....It sounds so cool when you tell people about having a chunk of your liver cut out of your body and then explaining to them how it grows back! :D


Wishing the best for you,
Rob in PA
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

stu
Posts: 1561
Joined: Sat Aug 17, 2013 5:46 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby stu » Tue Dec 07, 2021 4:24 pm

My mum never let a surgical window go by so I am definitely bias .
However other treatments are giving surgeons a good run for their money . Go in aggressively and knock this back one way or another . It took a full two years to get on top of my mum’s tumour burden .
Best foot forward to a good plan .
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: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Wed Dec 08, 2021 12:54 am

More news…

Ok, so the right hepatic vein resection/reconstruction is off the table (pun intended) - it’s so complex it would need to be done ex-vivo under cold perfusion, which has high post-op mortality (~20%), and also not great long term outcomes either.

However - the latest thinking is that if they can confirm that the middle hepatic vein is clear of tumour (it’s very close on CT, but perhaps not involved), then they could do a portal vein embolisation (PVE) to enlarge the middle segments (1 & 4), then do a full right hepatectomy to remove the tumour and associated vasculature. I’ve already had a left hepatectomy, so I’d be left with just the middle segments until they regenerate again, which is apparently fine. They will also take all out the suspicious lymph nodes, plus a bunch of other ones in the chain to be safe.

If the middle hepatic vein is involved, then this approach won’t work. In that case we would probably go for SBRT radiation on everything.

The bad news is one of the lung lesions (3mm) does likely look metastatic (it was indeed found on an earlier scan but only at 1mm), but it’s small enough to hopefully easily handle via SBRT, ablation or VATS if necessary.

MRI tomorrow to confirm more about the middle hepatic vein, then back to MDT Tuesday and surgical consult again Wed. Fingers crossed.
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

Markdale
Posts: 33
Joined: Wed Dec 02, 2020 4:45 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby Markdale » Wed Dec 08, 2021 5:28 am

Hey man, good you still have options. Looks like you have a bit of time time with the lung Mets. I recently had a vats/thoracotomy to get my lung Mets cut out, but they could only find one and didn’t want to risk cutting healthy lung tissue out that didn’t have cancer so they took a few lymph nodes and some other samples that came back negative. Now I will have sabr next week with just 2 sessions and the radiation onc I chatted with said it was approx 75% effective for crc. My point is I rushed in for surgery to get them cut out but I could’ve had sabr 1st and surgery as back up.
Did your oncologist mention why he thinks the lung Mets started growing now?

Sorry for the ramble just wanted to let my experience help for your lung mets
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4/24 lymph nodes. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule to confirm metastasis. Biopsy unsuccessful
1/1/21 thoracotomy (unsuccessful)
2/2022 sabr to 2 lung nodules

User avatar
CRguy
Posts: 10377
Joined: Sun Feb 10, 2008 6:00 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby CRguy » Fri Dec 10, 2021 9:30 pm

Rock_Robster wrote:MRI tomorrow to confirm more about the middle hepatic vein, then back to MDT Tuesday and surgical consult again Wed. Fingers crossed.
Arms legs fingers and eyes crossed for you my friend !

Great that your Docs are getting all the info and an MRI is a great look "inside"

Sending MEGA best wishes
Cheers and Harmony to you Rob
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
15 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Nycomomohead
Posts: 25
Joined: Sat Oct 30, 2021 7:34 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby Nycomomohead » Sat Dec 11, 2021 6:41 am

Sending positive best wishes.
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Thoughts on treatment approach - stage IV recurrent

Postby Rock_Robster » Wed Dec 15, 2021 12:59 am

Alright, looks like we’re doing surgery again! PVE booked for Monday, then (hopefully) a full right hepatectomy with extended lymphadenectomy of the celiac nodes. It’s gonna be “hairy” (I’ll be living on 2 liver segments for a while until it regrows), but that’s better than the alternative.

Thank you so much to everyone here as always for your kind words of advice and support.

Bring on resection #3!
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

stu
Posts: 1561
Joined: Sat Aug 17, 2013 5:46 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby stu » Wed Dec 15, 2021 10:16 am

All the very best with your up coming surgery .
My mum was down to 27% so must be similar size . Although small it did its job apart from struggling to push fluid through her body for a few months . A quick trip to more appropriately sized clothes helped .
It was also radical enough to eliminate the disease .
Take care ,
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 .

roadrunner
Posts: 240
Joined: Sun Jan 12, 2020 8:46 pm

Re: Thoughts on treatment approach - stage IV recurrent

Postby roadrunner » Wed Dec 15, 2021 12:04 pm

Rob: Congrats on the decision and on getting this opportunity! I wish you the best on this as well. I like the attitude, too. It’s inspiring, and will serve you well, I’m sure.
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, tumor cells removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT for remaining nodule 1/22
CT 3/22: Clear


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Cat9, Markdale and 1 guest

cron