Isolated Retroperitoneal Metastases with Unelevated Markers

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StDrogo
Posts: 21
Joined: Thu Jun 08, 2017 7:54 pm

Isolated Retroperitoneal Metastases with Unelevated Markers

Postby StDrogo » Thu May 17, 2018 7:18 am

I had previously posted about our situation in a different thread, but it may be more à propos to start a discrete thread. Essentially, my wife had a CT scan a couple of weeks ago. We didn't hear any results for a week, despite several calls. Finally, I pushed through the ER to get ahold of someone, who informed me that there is a 9 cm complex mass adjacent to my wife's right ureter. No other suspect lesions. Her CEA remains less than 1 (Dx 10), CA 19-9 is 8 (Dx 36), and CA 125 is 10 (Dx 99, elevated to 180). Other biochemical markers are well normal (don't have CRP yet; a few months ago it was 1.5 or so). She was also allegedly referred back to medical oncology; that never actually happened, but now I have arranged a meeting with her former oncologist tomorrow. We did receive an unexpected letter today informing us that she has an appointment with her HIPEC surgeon on May 29. I'm really not sure what to think. Hard to imagine this is a met from colon cancer since at least one of her tumor markers should be reliable (especially in the retroperitoneum) and there are no synchronous mets. Possibly the radiologist doesn't know how to read a postop CRS/HIPEC scan—SkiFletch previously reported some of his radiologist's confusions about his postop scans. Ideas?
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC

rp1954
Posts: 1380
Joined: Mon Jun 13, 2011 1:13 am

Re: Isolated Retroperitoneal Metastases with Unelevated Markers

Postby rp1954 » Thu May 17, 2018 7:20 pm

There are several possible attacks on diagnostics.
1. An expanded, less specific approach of panels associated with cancer, or even other conditions, measured before and after surgery. The nonspecific panels' meanings were pursued from the literature to avoid being blindsided. More cancer markers, scanning for anomalies on any suspicion, are possible. Several hundred dollars, on up.
2. More biochemical information around cytokines. $1000-$2000
3. Liquid biopsies for DNA. several thousand $

We spend extra especially before surgery (on #1), and especially hit the anomalies again after surgery. We phone in the orders ourselves to avoid errors.

We try very hard for broad immune stimulation in the weeks before surgery, even harder than this list. This first listing is also at least missing astragulus extract, WGP, PSK, 50k vitamin D3, used later and the second surgery. The cimetidine literature suggests even days can have useful results. We went longer and harder, and necrosed a lot of stuff. We even went the extra mile to use cimetidine in surgery as a total replacement for the proton pump inhibitor, a better immune approach as the proton pump inhibitors interfere with CIM's immune benefit.

We strongly favor IV vitamin C before and after surgery for several reasons, only one them being cancer itself. As a practical matter, the IV vitamin C may have to be done outside the hospital itself, constraining the proximate time some, but still useful. We find ways to work even closer.

We scaled back the aspirin and some of the natural blood thinners 3-7 days before surgery and easily hit his PT(INR) and APTT targets (zeroed in on multiple blood tests). The megavitamin K2 of course reduces bleeding time too.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

StDrogo
Posts: 21
Joined: Thu Jun 08, 2017 7:54 pm

Re: Isolated Retroperitoneal Metastases with Unelevated Markers

Postby StDrogo » Thu May 17, 2018 10:13 pm

I'm a bit confused about the relevance of your response.

While there are certainly some notable lacunae, the panels I have are relatively extensive. I have extensive, sometimes daily records of my wife's LDH, liver function, vitamin D levels, CBC, CRP, and a number of endocrinological panels from the months leading up to my wife's diagnosis. CEA, CA 125, CA 19-9, and AFP are from a few weeks before first surgery. Blood work from the three weeks between the oophorectomy and her (emergent) resection isn't particularly reliable, but I do have some. She only started on cimetidine (400 mg b.i.d.) about a month after her second surgery, but she did take it (escalated to 800 mg b.i.d.) in the perioperative window for the third exploratory laparotomy last December. She also took PSK for six months, but I eventually stopped buying it as I didn't notice a meaningful impact on any panels. Aspirin she has taken 100 mg q.d. except in the perioperative window. Though her D levels have never been depressed, she has taken 5k D3 every day since last May. She also takes silymarin. Used to take curcumin in the form of Longvida, but I also thought that was probably a waste of money owing to low bioavailability in therapeutic concentrations. Have considered IV C but haven't rigorously pursued it.

Anyway, that's all besides the point. At the moment, none of my wife's markers are elevated—yet there is allegedly an isolated 9 cm retroperitoneal mass in her upper right pelvis. CEA and CA 19-9 ought to be particularly sensitive for such a substantial mass if this were cancer . . .
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC

rp1954
Posts: 1380
Joined: Mon Jun 13, 2011 1:13 am

Re: Isolated Retroperitoneal Metastases with Unelevated Markers

Postby rp1954 » Fri May 18, 2018 2:48 am

StDrogo wrote:I'm a bit confused about the relevance of your response.....CEA and CA 19-9 ought to be particularly sensitive for such a substantial mass if this were cancer . .

[CEA/CA199]...only if the tissues are certain types of CRC or gastrointestinal cancer, AND communicate well to the blood. Also some met locations don't report well. This is why we cast the net broader on the non-specific panels analyzed with respect to a prior cancer or CRC diagnosis (compared with specialized med papers). We would also consider a liquid biopsy, if available, for finding more specific hits in a tight situation with unknown disease process or id. Your wife presents differently than most, I'm not clear how normalized her health and panels were following surgeries. There is the possibility it might be relatively "benign", a new primary, CUPS or another mystery. Different doctors or papers may also reflect particular experience treating off different markers. I'm not clear whether you had Kras genetic test results.

As time goes by, cell populations and/or expressions can change. We hit repeatedly at marker shifts or anomalies to suppress or remove them, as much as some preconception of the proper cancer treatment. A lot of people get thrown off by changes to a single marker trying to cling to prior methods and formulas that worked before, often with no formal options or trials available. On chemo, MCV changes have been distinctive for us too.

Timing and multiple adjuncts are factors with immune processes; recruitable high WBC seems preferable to depressed WBC and factions that remain unrecruited. The published perioperative with CIM are for metastatic spread prevention under particular conditions with some subtleties and exclusions. The published 3 week post op data seemed brittle to me. I have to say my bias is for longer, stronger pre-op with cumulative mild "good" molecules with multiple anti-inflammatory treatments, "natural" and not. We try to pick up many small improvements for both diagnostics and treatment chemistry where these capabilities interact beneficially.

PSK we use based on beneficial WBC and RBC changes that occurred with responses at two dose levels, as well as using CEA as a predictive marker for PSK benefit, based on published statistical associations with CRC treatment.

Our initial pre-op use of vitamin D3 (11,000 --> 17,000 iu) was based on concern about repletion (later validated), and enhancements, tempered by caution and supplies on hand. Our later, higher dosage use of megavitamin D3 (and its supportive adjuncts) was not based on deficiency, it was based on the recommendations of a UCSF endocrinologist who tracked research and unusual reports across a century for vitamin D on immune responses including cancer, and his subsequent clinical experience.

On many supplements that are debated, like curcumin, I allow that there may be secondary processes, like extra transport routes, that are poorly documented. I've seen this issue ignored (or inadequately described) several times when I know there are extra transport considerations, or "interesting" human data.

Some shrinkage/necrosis responses are fast, some play out over a year or two; best marked by scans or biopsy too.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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LPL
Posts: 410
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Isolated Retroperitoneal Metastases with Unelevated Markers

Postby LPL » Sat Jun 02, 2018 3:30 pm

Hi StDrogo,
Just want to say that I am impressed by your knowledge and your way of thinking. And I hope that how you are reasoning regarding your wifes testresult will be correct. Hoping that it will turn out ’nothing bad’.
Please come back and talk here when you want.
Not many here report Ca 19-9 but it is a test that is included in my DHs check-ups and last time it had a little jump up.. the onc did not look worried but I did not like it..His next blood tests & scan is at the end of June.
Kind Regards. /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

StDrogo
Posts: 21
Joined: Thu Jun 08, 2017 7:54 pm

Re: Isolated Retroperitoneal Metastases with Unelevated Markers

Postby StDrogo » Fri Jun 08, 2018 11:22 pm

I’ll update, for what it’s worth. The onc claims, contra information previously relayed from radiologist, that the mass is ovarian and my wife has diffuse carcinomatosis. HIPEC surgeon is much more willing to entertain a benign etiology (e.g., a peritoneal inclusion cyst and foreign body granulomatosis). PET is scheduled for next Tuesday, for what it’s worth (I wanted an MRI). My wife remains asymptomatic with no palpable abdominopelvic masses and her menstrual cycles very regular—and her tumor markers (CEA, CA 125, and CA 19-9, all elevated at Dx) all significantly below the normal thresholds.
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC

Stewsbetty
Posts: 133
Joined: Thu Jul 14, 2016 7:08 am

Re: Isolated Retroperitoneal Metastases with Unelevated Markers

Postby Stewsbetty » Sat Jun 09, 2018 7:35 am

StDrogo wrote:I had previously posted about our situation in a different thread, but it may be more à propos to start a discrete thread. Essentially, my wife had a CT scan a couple of weeks ago. We didn't hear any results for a week, despite several calls. Finally, I pushed through the ER to get ahold of someone, who informed me that there is a 9 cm complex mass adjacent to my wife's right ureter. No other suspect lesions. Her CEA remains less than 1 (Dx 10), CA 19-9 is 8 (Dx 36), and CA 125 is 10 (Dx 99, elevated to 180). Other biochemical markers are well normal (don't have CRP yet; a few months ago it was 1.5 or so). She was also allegedly referred back to medical oncology; that never actually happened, but now I have arranged a meeting with her former oncologist tomorrow. We did receive an unexpected letter today informing us that she has an appointment with her HIPEC surgeon on May 29. I'm really not sure what to think. Hard to imagine this is a met from colon cancer since at least one of her tumor markers should be reliable (especially in the retroperitoneum) and there are no synchronous mets. Possibly the radiologist doesn't know how to read a postop CRS/HIPEC scan—SkiFletch previously reported some of his radiologist's confusions about his postop scans. Ideas?


Hello, I am sure I don’t have the same level of scientific knowledge that you and others do but here is my personal experience. When I had a large mass in retroperitoneal area (5 cm that grew to 11 cm over 8 week period) I was in a lot of discomfort. I was having back pain and we were able to palpate the tumour and it was incredibly sensitive. I am hoping the fact your wife’s doesn’t seem to be causing pain is a good sign. :)
I am on Keytruda now and as my tumour shrunk my pain levels dropped.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda
Nov 2017 CT scans show significant shrinkage in tumours
Feb 2018 CT continued shrinkage
May 2018 CT shrinkage and stable spots

StDrogo
Posts: 21
Joined: Thu Jun 08, 2017 7:54 pm

Re: Isolated Retroperitoneal Metastases with Unelevated Markers

Postby StDrogo » Sat Aug 18, 2018 1:03 am

I’ll update. PET on June 6 revealed what HIPEC surgeon considered mets in liver segments 2 and 3; based on lack of morphological abnormalities in that area—apart from obvious incisional scar tissue from benign foreign body granuloma in December—I was virtually certain that the increased FDG uptake (SUV 7.5) represented a suture granuloma, though surgeon disagreed and strangely insisted he operated on a different area of those segments. Also as expected, there were no evident FDG-avid lesions in peritoneum but ovarian mass evinced some scant patchy uptake. Surgery proceeded on June 29. Surgeon remained pessimistic about liver, but there were no lesions whatsoever in peritoneum. Pathology revealed suture granulomas (surprise, surprise) in liver and suspect cancer in other ovary, which is tragic, certainly, but not nearly as grim as incompetent onc’s diffuse carcinomatosis diagnosis (he really ought to learn to read CT imagery of the postoperative abdo/pelvis—I, a humble researcher, really ought not know better) with only the option of palliative chemo; he was reluctant to even order a PET, despite radiologist’s recommendation for an MRI. Hospital takes ages for referrals to gyne, so I just had my wife’s GP prescribe transdermal estradiol, vaginal micronised progesterone, and testosterone cream as HRT; there doesn’t appear to be any evidence that my wife’s cancer is hormonally sensitive.
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC


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