JP66 wrote: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.