Need surgeon recommendations - stage 4c

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hilldog
Posts: 4
Joined: Thu Dec 15, 2022 8:45 pm

Need surgeon recommendations - stage 4c

Postby hilldog » Thu Dec 15, 2022 9:06 pm

Hi everyone,
I've been lurking around here for a few months and appreciate all the knowledge and support on the board!
I have stage 4 and am looking for help for a good friend of mine. He has stage 4c. He was just dropped by the local tumor board. He had the PVE done and was expecting liver resection along with peritoneum next but was just told they now won't do it because of some new lymph node mets they found. He is stage 4c and now trying to find a new surgeon who will/can operate. He's had an amazing response to chemo (primary tumor showed complete clinical response and all mets have been shrinking while on chemo).
I guess I want to know who the more "optimistic" and competent surgeons are (I wanted to say "aggressive" but that's maybe not what I mean - or maybe it is).
We're in the US but if you know of someone anywhere in the world I would love to know names.
Thanks in advance for any help/recommendations you all can give me. So grateful for this forum!

Rock_Robster
Posts: 743
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Need surgeon recommendations - stage 4c

Postby Rock_Robster » Fri Dec 16, 2022 1:28 am

Hi, I’m sorry about the news.

I also have liver, lymph, peri mets and the reality is it may be extremely difficult to find a surgeon who will operate in this case. Typically surgeons are only willing to take the risk of operating if it may be potentially curative, or if something is causing serious problems (and even in this case they’ll usually prefer less interventionist options like SBRT or ablation). Generally only oligometastatic disease is considered a surgical candidate (ie stage 4a), although some might do liver+lung or liver+nodes if there is a viable pathway to deal with the remaining disease.

At a minimum I would suggest attempting to demonstrate maintained/stable systemic control via chemo, then also consult with radiation oncologists, interventional radiologists, and hepatobiliary/peritoneal surgeons as to whether a hybrid approach could be possible (eg SBRT on the lungs and nodes), then resection and HIPEC on the liver/peri. Sequencing is always going to be difficult however, and the time off chemo could be risky. Overall you need a good ‘conductor’ for this complex orchestra - which would ideally be your medical oncologist, but it may need to be someone else (eg surgeon).

In parallel I’d strongly suggest to start looking into clinical trials.

Good luck,
Rob
40M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 > 2
Jun-22: 5
Sep: 10
Nov: 19
Dec/Jan-23: 17-19
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, sub-cm lung mets
3-4/22 Lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Liver/lungs stable. Lymph/peri undetectable

hilldog
Posts: 4
Joined: Thu Dec 15, 2022 8:45 pm

Re: Need surgeon recommendations - stage 4c

Postby hilldog » Fri Dec 16, 2022 11:55 am

Rock_Robster wrote:Hi, I’m sorry about the news.

I also have liver, lymph, peri mets and the reality is it may be extremely difficult to find a surgeon who will operate in this case. Typically surgeons are only willing to take the risk of operating if it may be potentially curative, or if something is causing serious problems (and even in this case they’ll usually prefer less interventionist options like SBRT or ablation). Generally only oligometastatic disease is considered a surgical candidate (ie stage 4a), although some might do liver+lung or liver+nodes if there is a viable pathway to deal with the remaining disease.

At a minimum I would suggest attempting to demonstrate maintained/stable systemic control via chemo, then also consult with radiation oncologists, interventional radiologists, and hepatobiliary/peritoneal surgeons as to whether a hybrid approach could be possible (eg SBRT on the lungs and nodes), then resection and HIPEC on the liver/peri. Sequencing is always going to be difficult however, and the time off chemo could be risky. Overall you need a good ‘conductor’ for this complex orchestra - which would ideally be your medical oncologist, but it may need to be someone else (eg surgeon).

In parallel I’d strongly suggest to start looking into clinical trials.

Good luck,
Rob



I'm not sure if I'm responding in the "right" way for formatting but am hoping this works out ok when I hit submit. Thank you for the response and suggestions, Rob! I will send the information along. It seems like since he had such a good response to chemo before, he might be able to get back to where he was before (a candidate for the surgery) but it sounded like the tumor board didn't have any other options for him for a way forward other than "just chemo" forever. SBRT looks very promising.
Regarding clinical trials, it seems like almost all require progression on standard chemo before you can get in. Is there a way to search for trials that are "in addition" to standard of care vs. "instead of"? There's so much happening in the research and clinical trial worlds, it's hard to keep up with it all (but offers so much hope for better options in the near future).
I really appreciate your help and suggestions. I hate being in this club but it's so reassuring to hear other peoples' stories- the strength and resilience in this group are truly amazing! At least we aren't alone.
Hillary

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: Need surgeon recommendations - stage 4c

Postby roadrunner » Fri Dec 16, 2022 1:34 pm

My post duplicated when I edited it, so I deleted one.
Last edited by roadrunner on Fri Dec 16, 2022 1:38 pm, edited 1 time in total.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (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 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: Need surgeon recommendations - stage 4c

Postby roadrunner » Fri Dec 16, 2022 1:35 pm

Hillary: Rob’s advice is experience-based and consistent with my understanding. I would like to add what might be a useful data point. The question of surgery at the margins of cancer treatment comes up frequently. It is usually seen as associated with curative treatment—as it often is—with systemic therapy disfavored by patients as palliative-only. Some folks see physician resistance to surgical approaches in given cases as based solely on the view that “it won’t help because there is too much systemic disease.” Understandably, patients often feel differently, wanting to roll the dice on what might be a very small chance that that view is wrong. The true picture is, I think, more nuanced.

Surgery in the context of metastatic disease has to be weighed carefully because it is not without the possibility of significant *negative* consequences beyond the obvious and usual risks of the surgery itself. In other words, it isn’t just that it might not help. It may make things worse. The linked article below is IMO important reading for anyone considering a surgical approach to metastatic disease.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5380551/

Of course, I’m not saying it’s never appropriate in those circumstances. My signature shows a VATS. The literature shows a clear trend to more and more surgical intervention against metastatic disease (e.g., Rob’s reference to resections of CRC mets in the liver and lungs), and the relatively recent acceptance of the concept of oligometastatic disease is a big part of that. Non-surgical options (e.g. SBRT, cryoablation, radio-frequency ablation, and certain cutting edge technologies current in trials) are also improving and becoming more widely available, as Rob mentioned, and often do not come with the same risks as surgery. The main thing to remember IMO is that the *whole* picture should be carefully processed: pre-and post-surgery systemic treatments, performance and immune status, timing, patient goals, substance and extent of knowledge of disease, etc. it is certainly an area where second and third opinions are helpful. But I would be sure that my team (and any second opinion docs) are aware of the broad range of options and can discuss risk-benefit in a comprehensive, objective way.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (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 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

hilldog
Posts: 4
Joined: Thu Dec 15, 2022 8:45 pm

Re: Need surgeon recommendations - stage 4c

Postby hilldog » Fri Dec 16, 2022 2:14 pm

roadrunner wrote:Hillary: Rob’s advice is experience-based and consistent with my understanding. I would like to add what might be a useful data point. The question of surgery at the margins of cancer treatment comes up frequently. It is usually seen as associated with curative treatment—as it often is—with systemic therapy disfavored by patients as palliative-only. Some folks see physician resistance to surgical approaches in given cases as based solely on the view that “it won’t help because there is too much systemic disease.” Understandably, patients often feel differently, wanting to roll the dice on what might be a very small chance that that view is wrong. The true picture is, I think, more nuanced.

Surgery in the context of metastatic disease has to be weighed carefully because it is not without the possibility of significant *negative* consequences beyond the obvious and usual risks of the surgery itself. In other words, it isn’t just that it might not help. It may make things worse. The linked article below is IMO important reading for anyone considering a surgical approach to metastatic disease.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5380551/

Of course, I’m not saying it’s never appropriate in those circumstances. My signature shows a VATS. The literature shows a clear trend to more and more surgical intervention against metastatic disease (e.g., Rob’s reference to resections of CRC mets in the liver and lungs), and the relatively recent acceptance of the concept of oligometastatic disease is a big part of that. Non-surgical options (e.g. SBRT, cryoablation, radio-frequency ablation, and certain cutting edge technologies current in trials) are also improving and becoming more widely available, as Rob mentioned, and often do not come with the same risks as surgery. The main thing to remember IMO is that the *whole* picture should be carefully processed: pre-and post-surgery systemic treatments, performance and immune status, timing, patient goals, substance and extent of knowledge of disease, etc. it is certainly an area where second and third opinions are helpful. But I would be sure that my team (and any second opinion docs) are aware of the broad range of options and can discuss risk-benefit in a comprehensive, objective way.



Thank you for that insight, roadrunner. I have read similar cautionary info about surgery before (probably when I was hoping for surgery for myself). It's so hard to know what to do and to make choices from a place of reason and not fear! Seems like all decisions are "dammed if you do, dammed if you don't" but I try not to dwell on that, and of course to keep in mind the nuance of all these choices. I will be sure to pass on the info and that article. I really appreciate the help!
Hillary

rp1954
Posts: 1639
Joined: Mon Jun 13, 2011 1:13 am

Re: Need surgeon recommendations - stage 4c

Postby rp1954 » Fri Dec 16, 2022 6:46 pm

First, you do have to find surgeons that do, do more difficult surgeries, These can be regional and national stars that are hospital, department or program heads. On another track, some are younger more ambitious with some kind of track record. You have to hunt and ask around.

Second, patients need to get an edge on physical condition and immune function. After chemo this is more difficult but still lots of opportunities. One that I think mattered to my wife was aggressive treatment for inferred gross vitamin D deficiency, treated with high doses of D3 (and K2 with magnesium). Another was CA19-9 targeting a la Life Extension articles and Japanese papers. Another was IV vitamin C for immune, surgerical and chemo recovery.

Often, several negative expectations need to be changed in terms of potential complications and normal systemic failure problems. One surgeon who was unhappy about potential aortic involvement, I got a radiologist's verbal opinion that the LN were not involved, and that was good enough to change a "no" to a "yes". Another surgeon was worrying over the systemic spread likely already existing and that surgically related, I said we already had handled that but needed the surgery soon because of a sense that we might not be able to hold it back much longer. After some discussion and history, he realized I had done lots of research, and decided we might actually be right. (Leaning one way, he almost fell out of chair, and I heard him say, "S***, I have to see this for myself")

I've discussed some of our steps to overcome inertia, technical problems and stonewalling previously.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Need surgeon recommendations - stage 4c

Postby Jacques » Sat Dec 17, 2022 1:07 am

roadrunner wrote:...Surgery in the context of metastatic disease has to be weighed carefully because it is not without the possibility of significant *negative* consequences beyond the obvious and usual risks of the surgery itself. In other words, it isn’t just that it might not help. It may make things worse. The linked article below is IMO important reading for anyone considering a surgical approach to metastatic disease.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5380551/

...

Hi roadrunner -

Thanks very much for sharing the link of the article above. Very, very interesting, and it makes one reflect on the important role that trauma-induced inflammation might have on metastatic proliferation.

While further researching the above topic, I ran across an article on systemic inflammation that purports to show the causal pathways involved in the relation between inflammation and the proliferation of metastases. Figure 1 in the article gives a visual image of the process involved. I found it interesting that some of the main components of this process are the same biomarkers mentioned in some of rp1954's past posts.

Inflammatory Markers and MicroRNAs: The Backstage Actors Influencing Prognosis in Colorectal Cancer Patients
https://www.ncbi.nlm.nih.gov/pmc/articles/instance/6073730

hilldog
Posts: 4
Joined: Thu Dec 15, 2022 8:45 pm

Re: Need surgeon recommendations - stage 4c

Postby hilldog » Sun Dec 18, 2022 7:24 pm

[quote="rp1954"]
Second, patients need to get an edge on physical condition and immune function. After chemo this is more difficult but still lots of opportunities. One that I think mattered to my wife was aggressive treatment for inferred gross vitamin D deficiency, treated with high doses of D3 (and K2 with magnesium). Another was CA19-9 targeting a la Life Extension articles and Japanese papers. Another was IV vitamin C for immune, surgerical and chemo recovery.

Thank you rp1954! I've seen a few things you've posted about expanded blood work, inflammation, and immunity and am trying to get a handle on all of that. I do have an Integrative Oncologist (naturopath) and take Vit D but not as high a dose as I think you've written about. I'm also taking curcumin, berberine, turkey tail mushroom capsules, melatonin, and magnesium, and when on chemo I was taking glutamine the 5 days after infusion. The naturopath recently recommended vitamin B supplement for neuropathy but I've read so much about folic acid that I'm kind of afraid to take that one. I asked my oncologist about Tagamet and/or aspirin and he said he's not opposed but that but I should wait until after chemo (have 3 months adjuvant coming up in January). Also planning to start IV C when chemo starts again. I kind of feel like I may have already missed some important windows before and after surgeries (I just finished staged liver resections and then colon resection) but I guess just need to look forward and not backward as much as I can.
I really appreciate all the information you've shared and need to make the time to really look at it in detail so I know what to ask the doctors at the next appointments. I will also look at the CA 19-9 stuff on Life Extension. In the mean time if you have any other thoughts about what I've listed above, I would love any input. It's crazy to me that we (patients and caregivers) have to do all this research and advocacy with the oncologists but I guess that's just how it is.


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