Question for the brains trust!

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Rock_Robster
Posts: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Question for the brains trust!

Postby Rock_Robster » Mon Jun 27, 2022 9:58 pm

Ok brains trust / hive mind, I need your opinions here please.

Last scan (PET and CT) was generally good. The liver looks completely fine (a couple of areas of non-specific low-level activity, but almost certainly related to the past PVE and healing from recent SBRT).

Nodes - nothing specific. Again some mild activity in the retroperitoneal area that was operated on only a few months ago (and is still sore).

Lungs - here’s the issue. There are a handful of tiny (TINY) things, most less than 1mm. There are a few (maybe 2-4?) that are a nudge larger (2-3 mm) and with features more suggestive of metastasis.

CEA is sitting right on 5.0, down slightly since November (was 12 at original diagnosis, and <2 when NED).

The consensus of 3 oncologists (and the radiologist) is that at least some of the lung things are likely mets, and nothing else. No idea how many or which ones however. They’re too small to characterise or biopsy at this stage. In short: “no measurable disease”.

My disease has been quite indolent since far (2 years NED with no maintenance, followed by 5 months of a largely stable recurrence without any chemo while we did other treatments). I had 11 celiac nodes removed in March of which 5 where positive, so residual lymphatic disease remains fairly likely (I think we can safely call this systemic now anyway). I’ve basically been given the choice of another surveillance period (2 months), or to a start a maintenance regimen of Xeloda+Avastin and see what happens on the next scans.

I have 2 oncologists recommending the chemo, and 1 recommending surveillance. Interestingly the 1 recommending surveillance is by far the most experienced of the lot, and has been my primary onc since day 1 almost four years ago. His clinical skills are uncanny. He does not believe there is any evidence supporting chemotherapy improving OS at this stage, and also that another scan in 2 months would likely tell us more about the biology and what we should be going after now (eg with ablation or SBRT) - a result which could be obscured if I was on chemo. He argues there is no life-threatening/limiting issues right now to justify a harsher regime, which should be saved for if/when needed. He indicated he would not object to me doing maintenance chemotherapy now if I wanted to, but the overall long-term benefit is likely to be negligible.

I’m truly on the fence here and appreciate your thoughts!

Thanks,
Rob
Last edited by Rock_Robster on Tue Jun 28, 2022 4:34 am, edited 1 time in total.
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

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ginabeewell
Posts: 552
Joined: Wed Oct 24, 2018 10:30 am

Re: Question for the brains trust!

Postby ginabeewell » Mon Jun 27, 2022 10:11 pm

I'm thinking about how I would feel in this situation - I would take the recommendation to wait:

It feels like your disease isn't moving super aggressively.
I'm equating your doctor's uncanny clinical skills with someone like Kemeny, who seems to be able to take in / understand data that others cannot, and probably has better intuition having worked with you for many years.
I've been burned by chemo making disease invisible vs smaller, and then having to wait for it to reappear so it can be ablated.
Generally, given an option for chemo vs something else, I go for something else!

I do have one question for you:
How reliable has your CEA been as a marker?

If reliable, I think I might opt to keep measuring that every few weeks or so - so that if you see some kind of sudden surge, you could ask for a scan sooner than the 2 month mark; but if it remains mainly stable, you can feel ok staying the course and knowing you were looking for any signal that something started to get aggressive.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

kiwiinoz
Posts: 1163
Joined: Thu Jan 03, 2013 11:44 pm

Re: Question for the brains trust!

Postby kiwiinoz » Tue Jun 28, 2022 3:21 am

Rob

My oncologist sounds similar to yours. I was in a small cohort where my lung resection meant that I had no visible disease and he said the same as yours, there was no scientific evidence to support chemo, but there wasn't any evidence to rule it out so the decision was mine. OK, he kind of tactfully said that as I had no chemo previously the case could be argued that it would be better to do chemo now in case it did something and it would mean a no regret situation.

Your position is vastly different in that you have potentially some slow burning mets, that could progress, and you can assess that in a few months time and ascertain the best path of action then. Acting with chemo now could put a stop to that.
It is a really hard call, but if I was in your position I would tend to go for the no immediate action and then assess the best course of action from there.

Just my five cents worth, and you can take it with a grain of salt.

Kiwi
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 - August 2020
Port Out 26 March 2015

roadrunner
Posts: 272
Joined: Sun Jan 12, 2020 8:46 pm

Re: Question for the brains trust!

Postby roadrunner » Tue Jun 28, 2022 12:19 pm

Rob: This is a tough question. It’s a little beyond my comfort zone, so I’ll just offer some ideas as to how I think I’d approach it.

First, you may have this, but I’d like more information on the pulmonary nodules before making this decision. How many are there, precisely, and what is their history on scans? To my knowledge, while nodules in non-smokers are common (smoking makes this far tougher to evaluate because nodules are ubiquitous and variable), nodules that demonstrate sustained growth over time are usually seen as likely mets in a rectal cancer patient. Of course, you and your team know that. But when they’re small, not much can be done other than systemic treatment, which is usually capable of extending PFS but, as you note, not OS. There are, of course, cases of complete remission (including, I think, Claudine’s husband) on standard chemo, but these are at best uncommon (to rare). Improved PFS on chemo is often of value, but so is a few months of good health unimpeded by chemo while monitoring, which leaves the tough decision.

I think I’d want that decision—whatever it is—to be part of a strategic plan. After the above questions are answered, I’d want to know if it’s reasonably likely that with/without chemo there would be a promising surgical or ablation path. If that’s in the cards, how better to get there? If not, which course is likely to give you more/better time (and keep in mind that promising treatments/trials may appear in the near future—pulmonary disease w/o more usually has a fairly long survival)? Finally, if your team just can’t say now, what is the specific rationale for their respective recommendations? It sounds like you may have gotten that from your long-standing oncologist but perhaps not the others? I tend to ask very specific questions, including odds of outcomes (I always bend over backwards to say “I understand it’s a guess, won’t hold you to it, etc.”). Answers sometimes appear after chipping away for a while.

Sorry, that was a bit all over the place. At the risk of repetition, I’ll try to list specific potential questions:

1. How many suspect nodules are there? What is the scan history/growth of each? I know you said there are “a handful” of micro nodules under 1mm, but did they recently appear? Have the larger nodules grown? (I know it’s within radiological error margins at this stage, but trends may be there across the group of nodules.)
2. With or w/o chemo, what is the likelihood of getting to the point where surgery or ablation can be productively employed? Is one course or another more likely to get there?
3. What is the specific rationale for the respective recommendations (chemo or no?)? [This is probably the short cut: I would have each “make their case.” Sounds like your original oncologist has, but how about the others?]
4. If you wait and these progress, does that make surgery or ablation tougher? Would it make remission on chemo even less likely, or increase the likelihood of further metastasis? If so, how much? (One unpleasant question that must be asked here, I think: If these progress, will the doctors or the healthcare plan just “throw up their hands” at some point as to ablation/surgery? In other words, is there a chance you’ll lose control of options?)
5. Is there a PFS benefit to starting chemo now to try to find an ideal regimen? Is there a PFS benefit to starting chemo earlier, or can you simply “catch up”?
6. Finally, I have dealt with this solely as a question of pulmonary nodules, but would there potentially be a chemo benefit in the other areas where you had mets? PFS or OS?

That’s what I thought of. Sorry if it’s unclear or confusing. I know I blathered on a bit here, which I try to avoid. (Sorry.) It’s definitely a hard call because there are so many variables. It also depends on your own personal goals and valuations of outcomes. You are very well-informed, strong, and positive, so I’m confident you’ll make a good choice. As always, may the road rise with you!
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign

jsbsf
Posts: 105
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Question for the brains trust!

Postby jsbsf » Tue Jun 28, 2022 6:46 pm

Your history is similar to that of DH, except that his recurrence was local. His recent APR resulted in a positive radial margin, but it was described as a small dark spot.

The board met and everyone opted for surveillance, except our oncologist, who spoke to our 2nd opinion oncologist from UCSF, recommended 3 months of Xeloda.

The logic is “insurance”.

It makes sense to us because otherwise we are waiting for a possible re-recurrence which would almost certainly result in a prostatectomy. So our gamble is effectively with a lesser chance of a prostatectomy in the near future - which nobody expects.

Since DH was similarly stage 4, we believe it might take care of any CTCs as well.

I haven’t endured the FOLFOX, radiation, or radical surgeries. So it is easy for me to recommend the insurance policy that our oncologist is recommending. Nothing is 100% guarantee, but after all this we’d like to have as close as possible.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets

User avatar
CRguy
Posts: 10390
Joined: Sun Feb 10, 2008 6:00 pm

Re: Question for the brains trust!

Postby CRguy » Tue Jun 28, 2022 8:29 pm

Rock_Robster wrote:Ok brains trust / hive mind, I need your opinions here please.

Not sure if I qualify as brain trust :shock:
maybe more brain drain / strain / pain / again ??? :mrgreen:

anyway here is my take :
1. use your experts ... so if your go to ONC says NO interim chemo, you need to consider that.

2. multiple opinions say interim chemo ... so you also need to consider that.

3. frequent surveillance and many eyes ON your situation is a great idea

My take IF I were you ( am not )

Listen to your go to Onc, make sure LOTS of eyes ON you and recheck status in 2 months seems reasonable.

When I was dealing with this originally I hit it hard with everything when I had a single lung met and had NOT done heavy chemo previously.
I never dealt with whack-a-mole popups.

I am not in current treatment so just giving you an IMO
Since you asked and you are a homie here !!!

CHEERS and Mega support whichever route you take

In Harmony with you on the Journey
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

Markdale
Posts: 37
Joined: Wed Dec 02, 2020 4:45 pm

Re: Question for the brains trust!

Postby Markdale » Wed Jun 29, 2022 6:15 pm

Hey rob, because it’s spreading in the lymph nodes maybe getting chemo earlier is better to stop the spread and growth. Lung Mets grow slow and the chemo could have a good effect on them, if it doesn’t SABR the lung Mets once they’ve grown then you can get a possible immune response. If things continue to grow in the lymphatic system it could always be a possibility that they think it’s too far gone for any treatment to work. Could you do the chemo for say 3 or 6 months have a rest and see what the lung growths do after?

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

jsbsf
Posts: 105
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Question for the brains trust!

Postby jsbsf » Thu Jun 30, 2022 8:43 am

I mentioned that our oncologist recommended 3 months of Xeloda. But yesterday the pharmacist called and said it’s 6 months. 1500mg for breakfast and another 1500 for dinner 2 weeks on one week off for 8 cycles. It does seem like quite a bit for “insurance”… We are taking the chemo though, mainly because he tolerated FOLFOX pretty well the first go around.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets

Rock_Robster
Posts: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Question for the brains trust!

Postby Rock_Robster » Thu Jul 07, 2022 12:59 am

Hi all, thanks very much for the really helpful responses above. Fascinating to see the range of opinions, as always.

I met with my (local) oncologist again and we distilled it down to two options:

1. Do nothing and scan again in 2 months, or
2. Start Xeloda+Avastin and scan again in 3 months (ie give it time to do something)

I concluded we’ll go with option 1. He agreed that there is no evidence for an OS benefit from chemo now, there are no imminently threatening lesions, that the risk of serious progression in this period is very small, and another scan further after treatment and without being clouded by chemo might inform more on what we should go after more aggressively. I’m also much happier that we’ll be checking again sooner, rather than just hoping for 3 months that the chemo worked.

We can also do a CEA check in the meantime, although it hasn’t been a perfect marker for me (12 at diagnosis, <2 when NED, and 5 at recurrence).

It was a bit of a tough conversation where he clarified that what we’re really looking for now is stability and staying symptom-free (rather than NED on imaging, which is somewhat arbitrary here). So in that way, when I start the chemo perhaps matters less than whether it works - ie if it was going to keep me stable now it would likely do the same if we start in 2 months. He did say he’d be uncomfortable with leaving it say 6 months, but a couple of months is unlikely to make any difference. He wasn’t a fan of locoregional treatments for me at this stage given the multiple potential recurrence sites, unless it was needed for palliative reasons (eg symptom control or removing life-threatening tumours). However I know the rad onc feels a bit differently on this and is happy to go after the lung lesions or nodes if/once we have a better idea which are mets.

Thanks again for the help,
Rob
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

roadrunner
Posts: 272
Joined: Sun Jan 12, 2020 8:46 pm

Re: Question for the brains trust!

Postby roadrunner » Fri Jul 08, 2022 9:55 am

Rob: Good luck with the approach you chose here. As I’m sure you know, CRC pulmonary mets are generally slow-growing and yours (if you have them) appear to be at a very early stage, so there is definitely room for optimism and long-term hope. Keep that immune system up in the meantime, and enjoy the chemo-free time as well!
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign


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