Re: New guy with old questions.

[Rock_Robster]

I guess everyone has to make their own decision here based on risk and benefit, but I’m inclined to agree with RP that a 2-3 month chemo break before surgery is more risk than I’d probably be prepared to take on. A month is quite normal, and I’d probably be ok with stretching it a couple of weeks further. But in the context of metastatic spread, small changes can happen fast and close an otherwise narrow surgical window.

The primary tumour is less of a concern as it will almost certainly still be undergoing shrinkage from the radiotherapy. But speaking as a guy who missed out on a liver resection because of distant lymphatic spread while waiting for a PVE to work, you really don’t want to give those buggers an inch or they’ll take a mile.

[JP66]

My gut feeling in asking the question was that the likely proper response is NOT to wait on surgery. I think I'll still discuss the topic with my doc, but I also think I'm leaning heavily towards just "get 'er done" and live with an ostomy this summer. If it means I'm otherwise healthy and cancer free all summer I'll take it

There was a lot that I'll respond to at a later time as well, but I will just say that my meeting with my surgeon will be face to face. I meet with one of my 3 docs every two weeks face to face. I will add that the team here in Norwalk, CT is really attentive, and I couldn't be happier with them.

[rp1954]

My gut feeling in asking the question was that the likely proper response is NOT to wait on surgery.

Knowing what I've seen, read, and all we did, I would say the biggest question is about optimum - WHICH surgery and conditions.
Because we took the initiative and aggressively went beyond "standard" on common points of failure, we were able to brush off doctors' writeoffs ("chemo forever" to terminal failure) and still stay in the cure game. Distant lymph nodes need better than standard or average talents for best results, and probabilities - where there are biological differences to navigate.

I think I'll still discuss the topic with my doc

We had a number interviews with various kinds of drs, and not just the first to agree.

but I also think I'm leaning heavily towards just "get 'er done" and live with an ostomy this summer.

I would seriously investigate LN removal first with continuous chemo for best QoL and probabilities.
But you would have to seriously work and prepare for several months to pull it off.
My wife was pretty fully functional a few weeks after better surgery conditions - better talent, better chemistry even though both (former) surgeon #1 (consulted month before surgery #2) and surgeon #2 (5 days after surgery #2) were writing her off. She actually was in surprisingly good shape 5 days after surgery #2. Treatment and support wise, we went beyond anything they had experience with even though #2 really was a hot shot.

If it means I'm otherwise healthy and cancer free all summer I'll take it

success is never guaranteed but our experience with the best talents we could find/get (I emphasize search and interviewing), the PALN surgery and recovery was rapid

... but I will just say that my meeting with my surgeon will be face to face.

More than one interview can be important for learning and pre - arranging, even if you switch surgeons or procedures.

I meet with one of my 3 docs every two weeks face to face. I will add that the team here in Norwalk, CT is really attentive, and I couldn't be happier with them.

New faces with different experience and talent is important for best options.
Most doctors have been 1-2 time interviews with only a few keepers.

My question is how much time and effort can and will you invest to achieve a better summer, and for better results?

[JP66]

RP,

Thank you for that thoughtful and helpful reply, very interesting. It brings to mind a couple of my own thoughts and questions.

First, before settling on my current team of doctors I did engage a team from Memorial Sloan Kettering in NY. Initially their plan included Total Neo-adjuvant therapy of radiation/chemo/TME surgery. The lead doctor very explicitly outlined they would NOT be removing the two Common Iliac lymph nodes. The team at Whittingham center in Norwalk Connecticut is on that same plan and have NOT mentioned removal of the metastatic lymph nodes either. Finally, I recall reading a Japanese study as regards my exact situation i.e. metastasis in the Common Iliac lymph nodes where they looked at patients who had surgery to remove said lymph nodes versus patients who did not and the result was no observable improvement in overall survival rates.

Question: Does anyone have links on research related to distant lymph node removal?
Question for RP specifically: When you write of "preparing" for surgery, what exactly do you mean? I do currently try and maintain the highest level of fitness I can, and exercise at least 4 times a week, and my body did recover faster than normal from a double hernia repair I had last August. Is that what you mean or are you talking about taking daily Xeloda for months before surgery along with other aspects?

Joe

[Rock_Robster]

This was the main source I was looking at when convincing my surgeon to complete a lymphadenectomy of the celiac nodes. Encouraging results but only a quite small cohort unfortunately.

https://www.sciencedirect.com/science/a ... 8415001244

This is also a good piece I referenced which covers lymph node cytoreductive surgery, amongst many others:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6422355/

[rp1954]

First, before settling on my current team of doctors I did engage a team from Memorial Sloan Kettering in NY. Initially their plan included Total Neo-adjuvant therapy of radiation/chemo/TME surgery. The lead doctor very explicitly outlined they would NOT be removing the two Common Iliac lymph nodes. The team at Whittingham center in Norwalk Connecticut is on that same plan and have NOT mentioned removal of the metastatic lymph nodes either.

Yep, it's all discouragement until you find a big league lead surgeon that is interested, willing and capable to push your case, and preferred tx. Our final choice was a Japan trained oncological surgeon where they routinely did LN dissections for cervical cancer. He appreciated my research on Japanese oncology papers. When I told him about my wife's initial "neoadjuvant" necrosis event, he was extra interested.
I studied and prepared for each new interview to state her case better and better.
No. No. NO. No. No, maybe, then yes. Yes enthusiastically.

Our second place, initial choice was an alum from MD Anderson, but he was hesitating (the no/maybe thoracic guy, I had to spontaneously get an outside radiology opinion on LN-aortic non-involvement), far less flexible, capable, and experienced than our final choice. Our first place/final choice surgeon was more positive, more supportive, and more ready for unplanned difficulties, like an aortic block cut and patch for LN involvement if necessary. Just what we wanted.

Still there's backbiting and potential interference even then.
e.g. our insurance's (dis)approving consultant (one of the hospital's staff surgeons) was a "Dr No" except that our surgeon was like god to all the rest for several large hospitals around, kind of a national champ, so although the insurance consultant was being negative about my wife's PALN surgery he signed off anyway. Regular chemo and RT folks were still eager to assert tx primacy, too.

Finally, I recall reading a Japanese study as regards my exact situation i.e. metastasis in the Common Iliac lymph nodes where they looked at patients who had surgery to remove said lymph nodes versus patients who did not and the result was no observable improvement in overall survival rates.

illiac nodes are lower down than para-aortic.
Usually the drs outlook is that LN higher up are harder to get and worse for cancer spread risks.
There are often a lot of pitfalls or qualifications in negative statements like "no significant" improvement. After comparing everything, often they just reflect bias, poor protocols, positives masked by the large std deviation of small sets, and/or lack of talent. When dealing with small heterogeneous datasets with many effects, the better means of analysis is modeling not simple zero/one dimensional elementary statistics.

Question: Does anyone have links on research related to distant lymph node removal?

It's a series of western papers since 2010 and mostly asian/japanese surgery or RT before that. Some earlier japanese papers (pre 2011) quoted size and NED/failure stats with UFT (oral chemo) done out to three years of oral chemo.
The typical western LN papers since 2010 often try to establish limits for significant LN (or sites!) size and number for candidate surgeries. This is because "standard" has been so wrongheaded about the perioperative conditions needed to suppress metastasis, recover, and be successful for a higher metastatic LN count. Our surgeon, although pleased at her long survival, still did not think she could be cured when followed up at six years post surgery. She eventually proved everybody wrong, although it took 7 years immunochemo after surgery #2.

I have not read ($$) the recent paper Peregrine linked but I have seen a fair number of its referenced papers (a common paper pool, mostly since late 2000s) - they replow the ground in similar but slightly different ways and modalities. Perhaps it's advertising, a "we'll take up to 4 big ones" group vs "we'll take up to 2 big ones" groups +-some chemo. By "big ones" (my argot for "significant size" LN, or with 1-2 LN sites, like my wife's conglomerated cluster), they'll usually set 10 to 15mm short diameter as a "significant" LN size. So by CT scan counts, my wife had perhaps one big met ~36mm depending on hospital readers, whereas my radiologist said two, 1.1 cm + 3 cm. The physical reality was a conglomerated cluster ca 6.2 x 3.1 cm with three big (~2cm) LN sticking out 40%-60%, and about 10-12 small cancerous LN (1 - 7 mm) inside (three more LN mets inside a quarter section for the official pathology, from a bulging bag of BBs~4-5mm + micromets[1-2mm]). The big LN had extensions. Outside the operating room, I studied/stared at that conglomerate for several minutes. So on post-op interview at 5 days, our surgeon was panicky about my wife getting on chemo immediately, not after 2-4-6 weeks wait (wow!). Since we had tracked detailed blood work, I was not overly precommitted to focally contained LN mets for success, we just needed cooperative medical support to get the PALNs out as well as possible. We were ready and going with oral chemo at 24 hours after a favorable surgery and recovery, with post surgical IV vitamin C started ASAP, daily for a little while.

I might point out the lung met analogy for non-standard surgeries.
In the most of the US, with more than 5-7 lung mets, surgeons will write you off.
Go to East Germany for the Rolles' laser resection and they've done successful cases with more than 100 lung mets removed.

Question for RP specifically: When you write of "preparing" for surgery, what exactly do you mean? I do currently try and maintain the highest level of fitness I can, and exercise at least 4 times a week, and my body did recover faster than normal from a double hernia repair I had last August. Is that what you mean or are you talking about taking daily Xeloda for months before surgery along with other aspects

All our treatment/chemical/nutrient extras, blood panel conditioning, and support personnel were in place and ongoing.
Immunochemo closer in to surgery is one potentially favorable aspect to LN suppression. Modified Xeloda use is now possible to extend what my wife did so comfortably with UFT.

No individual hospital regimes are optimized for LN success, so our final support plan was optimized off the cumulative of medical interviews, specific experience, extra data, and global papers.
You have to be your own advocate, and enforcer.

[JP66]

I consider my self fairly diligent in online homework when it comes to my health, but I have to admit your research and advocacy on behalf of your wife are simultaneously daunting and inspiring. Hopefully I can pick up on some of what you have learned before the time comes to decide on which surgery to push for.

Fortunately, I'm halfway through chemo and the side effects have been minimal and mostly on day 1-3, but I'm still at only 80% of max on the oxaliplatin although 100% on irinotecan. (spelling)

Anyways, just checking in today and wanted to say thank you for all the info.

Now to get reading

[rp1954]

...your research and advocacy on behalf of your wife are simultaneously daunting and inspiring.

If you do the simple conversational interactions I've suggested with (y)our whole blood work, it shouldn't be so daunting - it really cuts the reading way down and allows normally delayed sequential actions sooner and faster. Like my wife did, learning by doing was a lot faster and easier and she could understand her better bloodwork for herself.

Hopefully I can pick up on some of what you have learned before the time comes to decide on which surgery to push for.

Probably the fastest way to learn is get your bloodwork now, share it all, and ask questions.
It should focus and reduce your reading requirement on a lot of important miscellany and obscure stuff.
We multi-tracked preparations where a lot of stuff overlaps. Actively doing is learning and preparing more effectively.

Fortunately, I'm halfway through chemo and the side effects have been minimal and mostly on day 1-3, but I'm still at only 80% of max on the oxaliplatin although 100% on irinotecan.

For us, being ready sooner, everything in place and running, was important because "stuff happens".
For us, doing IV vitamin C routinely meant we had more options with our own nurse ready to go, and ready to be world class.
For us, having oral chemo stockpiled was key to dodging surprise shortages that would have seriously knocked my wife off chemo. For you, it might be the only way to actively bridge chemo directly to surgery since standard protocols tend to create and leave gaps between chemo and surgery or miss open windows. On Folfoxiri for LN, (imo) one of the problems is them burning too long with exhaustion/injuries when they should have switched to continuous immunochemo for healing AND inhibition of spread, and done surgery sooner, with the cancer spread by floaters and small stuff more directly inhibited.

[beach sunrise]

Reading your post and comments I believe you are on the right track.
For surgery I will say vitamin D levels drop dramatically so think about that. Inflammation can and most likely sky rocket so keep that in mind too. Both of these are important for recovery.
I went to Germany for Rolles laser lung surgery and it was successful. Maybe reach out to them on your case.
IVC is so helpful on many levels from wound healing, inflammation to cancer kill.

[JP66]

Two thoughts for today. First I will list all the items being tested every 2 weeks and ask if I should create a spreadsheet with these items or some sub-set and if there are tests not being performed that people here would recommend.

Items now being checked are: WBC, RBC, Hgb, Hct, MCV, MCH, MCHC, RDW CV, RDW SD, platelets, MPV, Neutro %, Neutro Absolute, Lymph %, Lymph Absolute, Mono %, Mono Absolute, EOS %, EOS Absolute, Base %, Base Absolute, CEA, sodium, potassium, chloride, HCO3, Anion gap, BUN Creatinine,eGFR,eCrCL, glucose, Ca, Mg, protein, Albumin, Globulin, Bilirubin, Alk phos, ALT, AST, Lipase

And, then on a totally separate note I found some more very very interesting write ups on lymphadenectomys:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8898625/
https://link.springer.com/article/10.10 ... 24-10730-0

Definitely need to start having some conversations with some surgeons.

[rp1954]

....if I should create a spreadsheet with these items or some sub-set and if there are tests not being performed that people here would recommend.

A well formatted spreadsheet saves time, helps clear thinking, and communicates faster and better.
I just spent some minutes updating it every few weeks, and about 15-20 minutes on her changes and next steps. Then several more weeks of reading, research, mapping and planning out various possibilities. (goggle eyed)
We had the full spreadsheet, in all its glory after 6-7 years, a 12+" trifold (three sheets of 8.5" x 14" cut down and overlapped) and various shorter, summary versions over time. The big, hi-res screens of today should be a nice improvement; I preferred a 17" laptop to smaller laptops.

Items now being checked are: WBC, RBC, Hgb, Hct, MCV, MCH, MCHC, RDW CV, RDW SD, platelets, MPV, Neutro %, Neutro Absolute, Lymph %, Lymph Absolute, Mono %, Mono Absolute, EOS %, EOS Absolute, Base[ophils] %, Base Absolute

CBC with differentials (and platelets). Kind of "standard" with minor variations and added services.
Some places you have to pay to add platelets to get the actual platelet count, vs merely an (in)sufficient, + or -.

sodium, potassium, chloride, HCO3, Anion gap, BUN Creatinine,eGFR,eCrCL, glucose, Ca, Mg, protein, Albumin, Globulin, Bilirubin, Alk phos, ALT, AST,

a common, fairly standard blood chemistry - aka Comprehensive Metabolic Panel (~the Medicare version); some places have a slightly bigger "CMP"
To me, it's missing some panels that we found useful: e.g. LDH, hsCRP, ESR, ceruloplasmin, GGTP, fibrinogen with mild chemo - heavy chemo is likely to elevate these from cumulative injury during a long treatment series. Even 40+ years ago, CRC patients would occasionally get more extended blood tests, like a "Chem25". ( I have some billing records).

Budget and information pressures usually dictate the final choices.
I wanted a good baseline survey, a smaller frequent maintenance level of blood tests, more periodic tests (1-4 months). and annual or event driven levels of testing.
See prior lists and discussions on initial blood survey, then cut down for the biologically relevant ones, and budget.
CEA - the standard CRC marker in the US. Some other countries add a routine CA199; failure to do any is a marker for incompetence.
Lipase - I assume this is an injury or progression monitoring, or special needs item.

And, then on a totally separate note I found some more very very interesting write ups on lymphadenectomys:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8898625/

The japanese surgeons apparently have (had?) a longer, grueling internship (more specialized?) for what they called sharp dissections, and clearly looked at the US practice levels with some disdain in some papers, ~2000-2011.

As for longest OS, with curative cumulative surgeries and multimodal treatments, what's really missing is the "glue" of better testing, better biochemical/nutrient support, and aggressive immunochemo.

[PainInTheAss]

RP,

Thank you for that thoughtful and helpful reply, very interesting. It brings to mind a couple of my own thoughts and questions.

First, before settling on my current team of doctors I did engage a team from Memorial Sloan Kettering in NY. Initially their plan included Total Neo-adjuvant therapy of radiation/chemo/TME surgery. The lead doctor very explicitly outlined they would NOT be removing the two Common Iliac lymph nodes. The team at Whittingham center in Norwalk Connecticut is on that same plan and have NOT mentioned removal of the metastatic lymph nodes either. Finally, I recall reading a Japanese study as regards my exact situation i.e. metastasis in the Common Iliac lymph nodes where they looked at patients who had surgery to remove said lymph nodes versus patients who did not and the result was no observable improvement in overall survival rates.

Question: Does anyone have links on research related to distant lymph node removal?
Question for RP specifically: When you write of "preparing" for surgery, what exactly do you mean? I do currently try and maintain the highest level of fitness I can, and exercise at least 4 times a week, and my body did recover faster than normal from a double hernia repair I had last August. Is that what you mean or are you talking about taking daily Xeloda for months before surgery along with other aspects?

Joe

I'm not sure if you're still following this thread, but I had a lymph node "light up" near my sacrum that they told me could not be removed with surgery and that I was as close to a stage IV you could be without actually being a stage IV.

My onc told me that we would check it again after treatment and see if it was still there.

I asked what options there were to remove it if we couldn't do surgery. He mention a number of things, even freezing it. I think Gamma radiation was an option.

Once I could finally do another PET scan to check it after treatment, it was gone and I'm still NED 11 years later.

I've always been worried it would came back since they couldn't take all of it, but if your cancer is the type that is programmed for cell death, chemo and radiation alone will kill all of it. This is why people with a complete response to chemo-rad have such a high survival rate.

[JP66]

I don't think I ever said "thank you" for these. I didn't use them all, but it really was helpful in guiding me to ask WAY more questions than I would have on my own.

So, I'm scheduled for a meeting with my surgical oncologist ... [February 19th] ... so I'm looking for any advice from the people active here these days...
Joe

Questions for the surgical oncologist

• How long should we wait after finishing FOLFIRINOX treatment before scheduling LAR surgery?
• Are there any special actions to take before LAR surgery ,e.g., special diet, special medications, peri-operative treatments, etc.?
• What types of baseline lab tests, scan procedures, EKGs, etc., will be required now just prior to LAR surgery?
• Will I have a meeting with the anesthesiologist prior to the surgery?
• What is the particular type of LAR that you recommend for my surgery -- open, laparoscopic, robotic, hybrid?
• Why is this particular type of surgery recommended? What are the specific advantages/disadvantages of your recommended approach?
• How long do you expect the surgery to take, from start to finish?
• Does Whittingham Cancer Center have a daVinci robot? If so, which model is it? - is it a daVinci Si (old model) or daVinci Xi (new model)?
• How many rectal cancer LAR surgeries have you done using the Whittingham Cancer Center version of the daVinci robot?
• How many trained assistants -- in addition to the surgeon-- are needed in order to carry out a robotic LAR surgery? Who at C. Anthony and Jean Whittingham Cancer Center is qualified as an oncology surgery assistant?
• Will any of the assistants be at the controls of the robot at any time during my surgery?
• How many of your prior LAR surgeries were on tumors that had been previously irradiated with the five weeks of Long Course Chemo-Radiation Therapy (LCCRT)?
• How successful were your LAR surgeries on previously irradiated rectal tumors -- e.g., surgical margins; number of lymph nodes removed; complications experienced; re-admission to hospital within 30 days, etc.?
• How do you plan to deal with the scars and adhesions resulting from the prior radiation? How will the scars and adhesions from the radiation affect the outcome of the robotic surgery?
• Will the possibility of internal hemorrhoids have any impact on the surgery?
• Will any of my co-morbidities have an adverse effect on surgery outcome?
• Will it be necessary to insert ureteral stents during surgery in order to prevent damage to the ureters ?
• Will the prior radiation likely lead to greater blood loss during surgery and a prolonged LAR surgery?
• For my resection, how far down in the rectum will the lower cut likely be made? How high up in the rectum will the upper cut be made?
• For my tumor, will the resection likely involve removing the entire recto-sigmoid junction as well?
• How large an incision will be necessary in order to remove the entire resected specimen?
• What is the likelihood that this large incision will develop into an "incisional hernia"?
• How will you prevent cancerous particles from the resected specimen from falling into the pelvic space while the specimen is being removed from the body?
• Will there be any clips or metallic items remaining in the body after the surgery is complete?
• How close to the Anal Verge (AV) will the anastomosis junction likely be formed?
• What measures will be taken to insure that the LAR is done as a TME and as a "Sphincter Sparing Procedure"?
• At what level will the inferior mesenteric artery likely be ligated -- high ligation or low ligation? What are the implications of this?
• What method or equipment will be used to create the anastomosis - intra-corporeal stapling? extra-corporeal stapling? manual suturing?
• Will the tools that are used for creating the anastomosis cause possible bruising or damage to the nearby sphincter muscles or pelvic floor muscles?
• How and when will you be testing for possible anastomosis leakage?
• At some point during the surgery will you be able to obtain images or visual impressions of the two common iliac lymph nodes (CILNs) that were initially identified as being cancerous? Will you be able to use fluorescent imaging or some other method to assess the current status and viability of these nodes?
• What type of ileostomy is planned: a loop ileostomy? an end ileostomy?
• How will you decide where to position the ileostomy incision? How will the chosen position impact the use of seatbelts in cars, buses, or airplanes while I still have a stoma bag in place?
• After the ileostomy is in place and a stoma bag in use, what kind of diet restrictions will be required, and for how long? When can normal meals resume?
• Does the hospital have a certified WOC (Wound & Ostomy Care) nurse who can train me on how to care for and change my stoma bags?
• How can I avoid getting a parastomal hernia?
• After the surgery is complete, how long will it take for the anaesthesia to wear off?
• After surgery, when will I be able to move from the recovery room to the main ward?
• What arrangements will there be for managing post-surgery pain? Pain pump? epidural patch? pain pills? other methods?
• How soon after surgery will all of the different catheters, drain tubes, IV drips, etc., be removed?
• Will I be able to have visitors when I'm on the ward?
• How soon after surgery can I be discharged from the hospital and be able to go home?
• How long will it likely take for the anastomosis junction to completely heal? What physical activity restrictions are required until healing is judged complete?
• How do you determine when it is time to reverse (take down) the ileostomy?
• After ileostomy reversal surgery, what can be expected in terms of bowel function? What are the most likely kinds of difficulties experienced by LAR patients after ileostomy reversal? How long after ileostomy reversal will it likely take for bowel function to return to normal?
• What kinds of referrals or technical help can be obtained to facilitate a quick return to normal bowel function?
• When the resected tumor is sent off to the pathologist, what kinds of optional genetic/genomic tests will be requested -- in addition to the standard path report for CRC specimens - i.e., will the resected specimen be sent out for genomic testing for mutations and for micro-satellite instability (MSI) status?
• How soon after surgery will I receive a copy of the pathologist's report on the resected tumor?
• Will I be able to receive a copy of the LAR surgery report and will it specify exactly what procedures were actually performed and how they were performed, e.g., CPT® Code 44208 for a surgery that is performed as a laparoscopic low anterior resection with a low pelvic anastomosis and a diverting ileostomy.
• How soon after surgery will a colonoscopy be done?
• How soon after surgery will a CT scan or other type of scan be done?
  

QUESTION: Will your meeting with the surgeon be a face-to-face meeting, or will it be a tele-medicine Zoom/Skype sort of interview?

NOTE: Before your appointment with the surgeon, you could read the LAR article below from the MSKCC web site to help you prioritize your questions:

https://www.mskcc.org/cancer-care/patient-education/about-your-low-anterior-resection-surgery

Also, you should remember to bring a copy of your complete Medical History, and your Current List of Medications, in case the surgeon needs further details.

[JP66]

Not that this information will be of any use to anyone here, but just in case anyone following along is curious my Surgical Oncologist Dr. Xiao Dong is planning to remove the two left common iliac lymph nodes when he does my LAR surgery this Thursday the 30th of May.

Wish me luck!

I'll most definitely post from the hospital if I can

Joe

[Green Tea]

Hi Joe,

Wishing you good luck on your Thursday surgery.

I think you are very lucky to have found a surgeon willing to do a complex, two-stage operation like that -- i.e., primary tumor removal + remote metastatic lymph node removal.

The Thursday surgery will no doubt be longer than a simple (TME/ileostomy) LAR surgery, but I think it will be worth it.

It will be interesting to see what the pathology report eventually says about the resected specimens. Hopefully the pathologist will not find any viable cancer cells there, which would mean that your modified TNT regimen was a success.

Good luck!