Uncommon metastasis for colon cancer

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Peg
Posts: 1
Joined: Tue Oct 03, 2023 5:03 pm

Uncommon metastasis for colon cancer

Postby Peg » Tue Oct 03, 2023 5:12 pm

Hi everyone
I'm new here hoping to find support for the horrible news i received today.
I was diagnosed with stage 3 cancer in 2021. Did 12 rounds of chemo and was declared cancer free. Today i was told by my oncologist my cancer had spread to my retroperitoneal lymph nodes and bones, an unusual route of metastasis but there you have it. Stage 4 and incurable. My liver and lungs are clear.
Has anyone else had this type of metastasis?
I appreciate any feedback
Thank you!

rp1954
Posts: 1848
Joined: Mon Jun 13, 2011 1:13 am

Re: Uncommon metastasis for colon cancer

Postby rp1954 » Tue Oct 03, 2023 10:59 pm

Sorry you need to be here but there may be extra answers available.

Distant lymph nodes (LN) only/primarily, are less common, but not uncommon, so there is experience on that; with the bones mets "early on"(?) is less common.
The first part of what you are describing with LN are members that have been called Olymphians here.
With adequately treated distant LN, we have seen some good results.
Only a dozen years ago, the distant LN diagnoses were more dreadful. They are dangerous.
There are more chemo, surgery and multimodal answers for LN today, and more cases of NED.
Some patients, have lost time and important chances without enough information, support, treatment and/or action.

Can you tell us more about yourself and your cancer history?
Things vary and it all counts.
Some routine suggestions: get better information, starting today.
Although these posts were written primarily for new CRC patients, most of it still applies. Read all of it, like your life depended on it.
Sometimes, unusual patterns of mets point to measurable anomalities in lab data, that may suggest other treatments.
If you get, and share the better blood work*, it helps understand your situation and possibilities, a lot.

* baseline
"Your" oncologist's minimum blood lab may be as little as CBC, platelets, CEA.
Commonly, Chem14 (CMP): Glucose, Calcium, Sodium, potassium, carbon dioxide, and chloride, Albumin, Total protein, ALP (alkaline phosphatase), ALT (alanine transaminase, SGPT), and AST (aspartate aminotransferase, SGOT), BUN, creatinine (sCr), bilirubin
Our extras: magnesium, HgbA1C, 25 hydroxy vitamin D ( (25 OH) D )
Inflammation panels: ESR, hsCRP, ferritin, ceruloplasmin, fibrinogen, d-dimer, $$$ option: IL6 + IL8
Liver related: GGT (GGTP), LD (LDH) or LDH5 isoenzymes, PT/INR, AFP
other cancer markers: CA199, CA125 (less common), βeta-HCG (less common)
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Pagola44
Posts: 316
Joined: Mon Jul 03, 2023 7:57 pm

Re: Uncommon metastasis for colon cancer

Postby Pagola44 » Wed Oct 04, 2023 12:17 am

I'm sorry to hear what was your initial diagnosis ?
E.g 3a,b,c
Lympth node invasion etc
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Uncommon metastasis for colon cancer

Postby Rock_Robster » Wed Oct 04, 2023 1:30 am

Peg wrote:Hi everyone
I'm new here hoping to find support for the horrible news i received today.
I was diagnosed with stage 3 cancer in 2021. Did 12 rounds of chemo and was declared cancer free. Today i was told by my oncologist my cancer had spread to my retroperitoneal lymph nodes and bones, an unusual route of metastasis but there you have it. Stage 4 and incurable. My liver and lungs are clear.
Has anyone else had this type of metastasis?
I appreciate any feedback
Thank you!

Sorry to hear - glad you found the group. I have distant lymph node involvement (para-aortic / celiac nodes), have had these previously treated with surgery (lymphadenectomy) and radiation (SBRT/SABR). Depending on the location and size this type of radiation can also be very effective for bone mets.

Good luck
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

User avatar
beach sunrise
Posts: 1025
Joined: Thu Mar 05, 2020 7:14 pm

Re: Uncommon metastasis for colon cancer

Postby beach sunrise » Wed Oct 04, 2023 4:08 am

It is good you found this group. So much support here!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

roadrunner
Posts: 446
Joined: Sun Jan 12, 2020 8:46 pm

Re: Uncommon metastasis for colon cancer

Postby roadrunner » Wed Oct 04, 2023 10:52 am

Peg: I have no specific knowledge on the type of recurrence you have, so I’ll limit myself to some general process observations.

First, and more so since your situation is uncommon, you should ensure that you get multiple, informed, up-to-date opinions on strategy. I don’t know what your own perspectives and preferences are, but doctors’ may vary widely here, so it is of utmost importance that all that is aligned.

Second, I’m not sure what your views on researching are (I think this is very important, but it can be psychologically challenging), but for less common presentations it can be crucial to ensure you get a full palate of strategic options and sufficient information about those options. Keep in mind, however, that much of the information out there reflects old studies, techniques, and beliefs. Current aggressive therapies can work wonders, and much of what you read will be of limited value for your unique situation.

Finally, as others have said, there are good stories in this area, and there are folks on this forum who have had successful outcomes in similar circumstances. It’s very hard to get difficult news like this, particularly soon after a “cleared” Stage 3 diagnosis/process, but you will find your feet in time, even if you are feeling shellshocked right now. I wish you the best!

[Edited to add: I noticed you (and likely your oncologist) used the word “incurable.” In my view that is an unnecessarily negative, unhelpful word in the Stage 4 CRC setting. There are, of course, studies that show that transplant patients who receive organs even 20 cancer-free years after apparent eradication of metastatic disease often develop the donor’s cancer. So yes, metastatic disease is often “incurable.” But IMO that is irrelevant. The goal really is extending a quality lifetime. With luck, extending it until the patient dies of something else. And that can be a very long time. There are many metastatic CRC folks on this forum who have over 10 years of “NED” status, with great hope of many more years to come. *That* goal is one that you can shoot for whether or not your oncologist thinks you’ve been “cured” or not.]
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
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

User avatar
CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

Re: Uncommon metastasis for colon cancer

Postby CRguy » Wed Oct 04, 2023 10:21 pm

Peg wrote:Hi everyone
I'm new here hoping to find support for the horrible news i received today.
I was diagnosed with stage 3 cancer in 2021. Did 12 rounds of chemo and was declared cancer free. Today i was told by my oncologist my cancer had spread to my retroperitoneal lymph nodes and bones, an unusual route of metastasis but there you have it. Stage 4 and incurable. My liver and lungs are clear.
Has anyone else had this type of metastasis?
I appreciate any feedback
Thank you!


Sorry you have to be on the best forum nobody ever wants to have to join !
BUTT ... you can see the kind of folks we have here by the replies you already have.
Doctors treat the disease inside the person ... AND here,
we support the PERSON living inside the disease ( I've been here since 2008 )

Couple of questions if you are Ok to share :
stage 3 cancer in 2021 ... Do you have the exact pathological diagnosis / description / location ? (i.e. ascending colon, transverse colon, descending colon, recto-sigmoid colon )
What chemo ?
What follow up monitoring / imaging has been done to lead to the recent diagnosis of a recurrence ?
What exact location of nodes and boney mets ?

The more info we have here, the better to share our collective experiences with you.

In Harmony with you on the Journey moving forward
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Uncommon metastasis for colon cancer

Postby Claudine » Thu Oct 05, 2023 12:30 pm

Hi Peg and welcome to the group, hopefully you can find some helpful information here!

My husband also has had a very unusual cancer so far - pretty much everything in the past 6 years has been in the <1% of cases: no primary, isolated lumbar vertebrae met -> adrenal gland met -> rectal primary discovered 4 years down the road -> plexopathy from too much radiation -> isolated iliac lymph node met. Each one of those events is extremely rare!

When cancer is in the bones it is often called "incurable" because it's usually impossible to resect a bone; but bones can be irradiated, and in some cases it leads to remission. Not the case for my husband, but it's also possible to live with cancer as long as it's kept in check; cancer as a chronic disease.

As for the lymph node, like rp1954 said, there are many treatment options. We were hoping for a quick "get in and take it out", which may happen at some point, although right now it looks like DH will undergo some systemic treatment as his CEA values are on the rise, and he hasn't had any in almost 4 years.

it is a distressing diagnosis, but definitely not the end of the line, and it is possible to achieve NEDdom even with bone mets, or at least stability. Wishing you strength XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

rp1954
Posts: 1848
Joined: Mon Jun 13, 2011 1:13 am

Re: Uncommon metastasis for colon cancer

Postby rp1954 » Tue Feb 06, 2024 4:15 pm

Claudine wrote:...My husband also has had a very unusual cancer so far - pretty much everything in the past 6 years has been in the <1% of cases: no primary, isolated lumbar vertebrae met -> adrenal gland met -> rectal primary discovered 4 years down the road -> plexopathy from too much radiation -> isolated iliac lymph node met. Each one of those events is extremely rare!

When cancer is in the bones it is often called "incurable" because it's usually impossible to resect a bone; but bones can be irradiated, and in some cases it leads to remission. Not the case for my husband, but it's also possible to live with cancer as long as it's kept in check; cancer as a chronic disease.

it is a distressing diagnosis, but definitely not the end of the line, and it is possible to achieve NEDdom even with bone mets, or at least stability. Wishing you strength

As a matter of principle for unusual cancer distribution, you might post DH's baseline blood test (above) with even more cancer markers looking for hints.

If you can find generically treatable markers, you might be able to do more with generic answers.
That's how we did it repeatedly for weird stuff to make mild oral chemo work.

Also, if you can dig out and post his original tests and blood work when he had an unknown primary, there may be hidden treasure there too.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Pagola44
Posts: 316
Joined: Mon Jul 03, 2023 7:57 pm

Re: Uncommon metastasis for colon cancer

Postby Pagola44 » Tue Feb 06, 2024 6:00 pm

Op has not posted since hope she is ok
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Uncommon metastasis for colon cancer

Postby O Stoma Mia » Wed Feb 07, 2024 11:05 pm

There's an organization in Europe that publishes subscription-based e-journals, where each issue is dedicated to a different medical topic. One of the latest topics is "Remote Lymph Node Resection":

    Management of Surgically Accessible Lymph Nodes Beyond Normal Resection Planes

    Abstract

    This article discusses the management of isolated metastatic lymph nodes for colon and rectal cancer. There are traditionally significant differences in how certain regions of lymph nodes for colon and rectal cancer are managed in the East and West. This has led to the development of the lateral lymph node dissection for rectal cancer and extended lymphadenectomy techniques fo
    r colon cancer. This article will evaluate the literature on these techniques and what the surgical and oncological outcomes are at this time. In addition, colon and rectal cancers can occasionally have isolated distant lymph node metastases. These would traditionally be treated as systemic disease with chemotherapy. There is consideration though that these could be treated as similar to isolated liver or lung metastases which have been shown to be able to be treated surgically with good oncological results. The literature for these isolated distant lymph node metastases will be reviewed and treatment options available will be discussed.


    Source: https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0043-1761474 (2024)

For most issues you can view the Abstract and list of References for free, but you have to have a subscription to read the article itself.

Management of Stage IV Colon and Rectal Cancer

https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0043-1761446

Some topics on CRC surgery:

https://www.thieme-connect.com/products/ejournals/journal/10.1055/s-00000049


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