Possible lymph node metastasis

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Boys0406
Posts: 9
Joined: Mon May 13, 2019 8:56 pm
Facebook Username: dcrase

Possible lymph node metastasis

Postby Boys0406 » Mon May 13, 2019 10:29 pm

Hi! This is my first time posting. My husband was diagnosed with Colon Cancer this past November. Currently it’s stage 3c. His tumor also invaded the back of his bladder and he had 2 positive lymph nodes out of 59. He had surgery to remove the tumor and about 1/3 of his bladder. He had clear margins after surgery, but unfortunately they were unable to biopsy a few lymph nodes that showed up on his PET scan prior to surgery as possible distant metastasis. The surgeon told us that they were not within reach and that because he tested so many lymph nodes and only 2 were positive, that statistically these were probably negative as well. The oncologist did not necessarily agree with that and is still concerned about them. My husband is doing adjuvant Folfox and only has two treatments left. We are getting worried about the scan and if the lymph nodes were cancerous because if they were, then it would make his cancer stage IV.

He has not told us the exact name of the suspect lymph nodes. We just know they were somewhere up higher in his abdomen. From looking at his CT and PET scan reports, it lists metastatic lower retroperitoneal and pelvic adenopathy. Then it specifically lists presacral and inferior mesentary artery chain lymph nodes. It also lists lymph nodes along the left side of his distal aorta and left common iliac artery. I have been trying to research and figure out which ones are considered distant and would make it stage 4 cancer. We won’t see our oncologist again for a few weeks as we see the oncology nurse this week and when we asked her last time she did not know. Does anyone out there have experience with this? Does anyone know which lymph nodes are the distant ones? Our oncologist has said that if the lymph nodes shrink after chemo it could be good because they responded, but then it could mean they were cancer. He also said that it could have just been inflammation from the tumor. It is so confusing and frustrating. We have been waiting 6 months to find out. Is there any way to know for sure? Thanks for any advice you can give.
Wife of DH-46yrs old
DX’d-11/18 rectosigmoid colon cancer
T type-adenocarcinoma
Positive LN-2/59
CEA- 239.8
CDX-2 positive
dMMR-retained nuclear expression of all 4 mismatch repair proteins
T4bN1bM-pm(or listed as n/a, couldn’t biopsy possibly LN)
Stage3c (invaded bladder wall)
11/18-surgery, ileostomy, and removal of back of bladder
12/18-Folfox started (12 cycles)
2/19-CEA 1.1
3/19-blood clot,hospital 3 days
3/19- began Eliquis
5/31/19-Completed Folfox

rp1954
Posts: 1518
Joined: Mon Jun 13, 2011 1:13 am

Re: Possible lymph node metastasis

Postby rp1954 » Tue May 14, 2019 5:38 am

It's not uncommon that there is inadequate and confusing information about advanced colon cancer during the first months, and first year, on distant lymph nodes.

What's likely going on is that the surgeon may be trying to be "rigorous" in his AJCC staging classification, based on surgically biopsied materials only, and may in this type of situation, understage the patient because some concrete clues were not yet obtained. The oncologist may have a different odds based view of whatever data you originally presented, and say to himself or you, looks likely stage 4 to me, but we don't have concrete data to prove it. What country or hospital you are in will often affect what data you have before and after surgery, and how surgeons and oncologists initially try to evaluate and treat the cancer.

Sometimes they will use Mx instead of the more limited M0 for suspect cases, but the surgeon's M0 definitely can be mistaken even if he strongly suspects M1. Other tissue and bloodwork before and after surgery can have useful information content that was missed or ignored. The more diagnostic data you post, like blood data before/after surgery (e.g. CEA, CA199, LDH, WBC) , tissue data (differentiation, MSI/MSS status, KRAS/BRAF status), PET, MRI or CT scans, and treatment data, the more we can compare in our comments.

Some of the locations mentioned are distant. There are a lot of cases here called Olymphian, a pun on Olympian, for mets in distant lymph nodes that can be searched out in the archives, the box above with "Search this topic...". Distant lymph nodes can be a tough diagnosis, tough to get correct, late in getting more accurate information, and distant lymph nodes are difficult to treat curatively. We did manage to beat them down.
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

Green Tea
Posts: 187
Joined: Mon Oct 24, 2016 10:48 am

Re: Possible lymph node metastasis

Postby Green Tea » Tue May 14, 2019 7:44 am

Boys0406 wrote:... I have been trying to research and figure out which ones are considered distant and would make it stage 4 cancer. We won’t see our oncologist again for a few weeks as we see the oncology nurse this week and when we asked her last time she did not know. Does anyone out there have experience with this? Does anyone know which lymph nodes are the distant ones? ...

I do not have direct experience with metastatic lymph nodes since I have always been "N0M0", but my layman's understanding of this issue has always been the following:

1. The lymph nodes that are going to be removed by the original surgery are called "local" lymph nodes. If any of them are malignant, then these are considered "local" metastases and this is reflected by an N coding of N1 or N2 instead of N0. (Your husband had 59 local lymph nodes removed with two of them being cancerous, resulting apparently in a staging of T4b N1a Mx, i.e., Stage III-C).

2. All the rest of the lymph nodes -- i.e., the ones not removed by the original surgery, wherever they may be located in the body -- are considered as "remote" lymph nodes and this would be reflected by an M coding of M1a or M1b instead of M0 or MX if any of them are found to be cancerous. This would automatically classify the patient as Stage IV once these lymph nodes have in fact been confirmed as being cancerous. Confirmation of this might require an eventual biopsy of the lymph nodes in question.

Furthermore, all lymph nodes found to be cancerous, whether local or remote, are to be considered as metastases ("mets"). The main difference between the two kinds of mets is that cancerous local lymph nodes will be removed by the original surgery and can never cause a problem again, while cancerous remote lymph nodes still remain in the body and will be a constant menace wherever they may be located since they have not yet been removed by surgery, ablation, or neutralized by some other means.

WarriorSpouse
Posts: 187
Joined: Tue Aug 16, 2016 9:02 pm

Re: Possible lymph node metastasis

Postby WarriorSpouse » Tue May 14, 2019 11:06 am

Welcome to Colon Talk. There are many here with good advice and as stated previously, you can always use the search tool to read prior discussions such as "Olymphians," hospitals, and treatment plans. Many here always suggest seeking a consultation with a major cancer center such as Dana Farber / Boston, Memorial Sloan Kettering / NYC, or MD Anderson / Houston for post operation treatment plans.

You should update your profile so that others can see what you may be living close to. If you are in Canada or the UK, there are people here on Colon Talk with specific advice for those healthcare systems.

It sounds like your husband should be staged at IV, since it is outside of the GI track area. I see this IV staging as a treatment benefit (oddly) because your husband's Oncologist can and should be seeking the most aggressive and long term treatment plan available for his genetic tumor profile. For my wife, that included a year long initial treatment of 5FU and Avastin. Avastin is expensive, and her maintenance program included Avastin every three weeks for the past four years with Zeloda. A stage IV diagnosis opens up options for aggressive treatment plans and post diagnosis surveillance, meaning the best care and due diligence that your husband deserves.

Please post more as you learn it and more will chime in too. All the best...We are here for questions if needed.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months) NED 05/2015, Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev, pending genetic results. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

rp1954
Posts: 1518
Joined: Mon Jun 13, 2011 1:13 am

Re: Possible lymph node metastasis

Postby rp1954 » Tue May 14, 2019 11:35 am

Usually they consider 21 regional lymph nodes as the goal for the curative colorectal surgery and may sample a few others. Our first surgeon claimed to sample one distant lymph node negative) that was peripheral to his field, without massively disturbing the other organs, like the next operation my wife had. The indication that was important to me later, based on my own literature review, was that many of my wife's initial blood levels were those of stage 4 patients, rather than just a stage 3. More statistics rather than definitive information.

So they struck out twice on critical M1 information from my wife's first surgery (distant lymph nodes and the necrosed peritoneal mets) and did not do a PET scan before the first surgery. But the metastatic distant lymph nodes were still there. Her left over CEA and CA199 elevations were then driven down by her chemo until a lowered dose allowed the LN mets to grow again. So how did they differentiate? Not when the CEA and CA199 climbed alarmingly, but rather on the CT scans. However, my wife's immunochemo did not cause CEA and CA199 elevations with even heavier treatments.

In stage 2-3 patients with a curative surgery, the CEA and CA199 will typically decline to a low base level in days or 1-2 weeks, without any chemo. With Folfox or other heavy cyclical treatments, the CEA and CA199 levels will likely rise later on due to inflammation from the treatment series. So now your question is, how (and when) do your local staff differentiate any distant lymph nodes, and how can you do better.
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

jep
Posts: 121
Joined: Sun Jun 11, 2017 7:45 pm

Re: Possible lymph node metastasis

Postby jep » Tue May 14, 2019 4:50 pm

Hi boys0406,
My husband is scheduled to have surgery in August to remove 1 cancerous lymph node in his abdomen (and possibly a second that is suspect, but has not been biopsied), as well as more of his colon (as a biopsy during scope came back positive) . . . I have so much anxiety about this surgery because he suffered many complications the first time around, and was hospitalized for 22 days . . . That surgery was an emergency surgery, so I'm hoping this planned one will go more smoothly. My husband's surgeon is a board certified colorectal specialist and we trust him very much. He feels that the surgery is doable, but he is worried about the location of the 1 node (which seems to be snuggled up between his abdominal aorta and some other important vessels . . . so, the surgeon is bringing in a vascular specialist to assist with the surgery . . . I know you are probably out of your mind with fear and worry, and I get it . . . we're thinking that this surgery (though risky) is his best chance to beat this . . . he will be doing 6 weeks of radiation and xeloda prior to August surgery . . . there is always the chance that more nodes may pop up after this surgery, and then what? I'm not sure if I can help in any way, or answer any other questions, but please let me know if I can.
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (May 2019)

Boys0406
Posts: 9
Joined: Mon May 13, 2019 8:56 pm
Facebook Username: dcrase

Re: Possible lymph node metastasis

Postby Boys0406 » Tue May 14, 2019 6:57 pm

Thank you to all of you that have responded so far. I really appreciate your concern and input. Thank you to WarriorSpouse and rp1954 for the mentioning of Olymphian. I saw a few posts under that when I was browsing the site. Now I need to see about looking in to posting questions there. I am also going to talk to my husband about seeking consultation from a major cancer center if we are still unclear of his stage and treatment after his scan next month. The oncologist did say that we may look into genetic testing, so we'll have to ask about that when we see him next. I also plan to look at the other information that rp1954 mentioned and list it on my signature to give more information. I do know that his cancer was grade 2-moderately differentiated and that he had both a CT and a PET scan. I live in the US(North Carolina) so any of the hospitals listed by WarriorSpouse would be good for us to look into. I tried to put in my location on my profile, but wasn't sure where to find it.

Well tomorrow is chemo #11/12! I know he's dreading it, but at least we are closer to the end of this treatment.
Wife of DH-46yrs old
DX’d-11/18 rectosigmoid colon cancer
T type-adenocarcinoma
Positive LN-2/59
CEA- 239.8
CDX-2 positive
dMMR-retained nuclear expression of all 4 mismatch repair proteins
T4bN1bM-pm(or listed as n/a, couldn’t biopsy possibly LN)
Stage3c (invaded bladder wall)
11/18-surgery, ileostomy, and removal of back of bladder
12/18-Folfox started (12 cycles)
2/19-CEA 1.1
3/19-blood clot,hospital 3 days
3/19- began Eliquis
5/31/19-Completed Folfox

Deb m
Posts: 491
Joined: Tue Jan 14, 2014 10:08 am

Re: Possible lymph node metastasis

Postby Deb m » Wed May 15, 2019 9:14 am

On my husbands first pet scan after diagnosis, two lymph nodes lit up on the scan. When they removed them during the surgery, that were negative. Our oncologist at MDA said they were probably inflamed or infected from just having cancer. I'm hoping the same for you and that they are not censorious.

Hang in there,

debm

boxhill
Posts: 242
Joined: Fri Apr 06, 2018 11:40 am

Re: Possible lymph node metastasis

Postby boxhill » Wed May 15, 2019 4:30 pm

My oncologist told me he now routinely orders genetic testing for all stage 3 and beyond patients. It should be standard of care at this point. Did they at least test for dMMR/MSI, BRAF, and KRAS?

I am not impressed with your oncologist and his or her lack of diligence in answering your questions.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

Boys0406
Posts: 9
Joined: Mon May 13, 2019 8:56 pm
Facebook Username: dcrase

Re: Possible lymph node metastasis

Postby Boys0406 » Wed May 15, 2019 9:16 pm

In response to your question boxhill, my husband has not been genetically tested yet. The problem is that my husband doesn’t want to research, go through the reports, look at blood levels, his PET scan and then ask questions etc... There’s a few reasons for that, one is that he is not the type to look into all the details, research and ask questions about what he discovers. Two, he is working full time as a lawyer(long hours) while he goes through chemo and when he’s home he is just too tired. Finally, it’s just too depressing and anxiety producing(which I totally understand). He thinks I am spending too much time looking into everything and “obsessing” as he says, while I am the type of person that needs to fully understand everything. I just have lots of questions that I want answered.
To be fair, we also only actually get to see his oncologist about once a month because he’s on two week cycles. So we see him once, then the oncology nurse. I also find out information that I have questions about and my DH doesn’t think we need to ask etc... I told him that we should just send him a message through the online system the healthcare center has, but he just wants to wait until the scan. Frustrating! I also don’t want to worry him by telling him everything I read or ask the oncologist a question he isn’t ready to hear the answer to either. I just want to b proactive.
I feel he is just trying to think positively and wants to just concentrate on being done with this chemo regimen. Whereas, I want to be prepared for the worst and I realize that it often recurs. Even if we get a clean scan this time, it may not be over(although we hope it is).
Sorry for the rambling, been frustrated about this for awhile.
Wife of DH-46yrs old
DX’d-11/18 rectosigmoid colon cancer
T type-adenocarcinoma
Positive LN-2/59
CEA- 239.8
CDX-2 positive
dMMR-retained nuclear expression of all 4 mismatch repair proteins
T4bN1bM-pm(or listed as n/a, couldn’t biopsy possibly LN)
Stage3c (invaded bladder wall)
11/18-surgery, ileostomy, and removal of back of bladder
12/18-Folfox started (12 cycles)
2/19-CEA 1.1
3/19-blood clot,hospital 3 days
3/19- began Eliquis
5/31/19-Completed Folfox

Pyro
Posts: 239
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Possible lymph node metastasis

Postby Pyro » Thu May 16, 2019 9:22 am

Boys0406 wrote:In response to your question boxhill, my husband has not been genetically tested yet. The problem is that my husband doesn’t want to research, go through the reports, look at blood levels, his PET scan and then ask questions etc... There’s a few reasons for that, one is that he is not the type to look into all the details, research and ask questions about what he discovers. Two, he is working full time as a lawyer(long hours) while he goes through chemo and when he’s home he is just too tired. Finally, it’s just too depressing and anxiety producing(which I totally understand). He thinks I am spending too much time looking into everything and “obsessing” as he says, while I am the type of person that needs to fully understand everything. I just have lots of questions that I want answered.
To be fair, we also only actually get to see his oncologist about once a month because he’s on two week cycles. So we see him once, then the oncology nurse. I also find out information that I have questions about and my DH doesn’t think we need to ask etc... I told him that we should just send him a message through the online system the healthcare center has, but he just wants to wait until the scan. Frustrating! I also don’t want to worry him by telling him everything I read or ask the oncologist a question he isn’t ready to hear the answer to either. I just want to b proactive.
I feel he is just trying to think positively and wants to just concentrate on being done with this chemo regimen. Whereas, I want to be prepared for the worst and I realize that it often recurs. Even if we get a clean scan this time, it may not be over(although we hope it is).
Sorry for the rambling, been frustrated about this for awhile.


I’m with him.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda, CEA @36, treatment failure

boxhill
Posts: 242
Joined: Fri Apr 06, 2018 11:40 am

Re: Possible lymph node metastasis

Postby boxhill » Sun May 19, 2019 12:49 pm

Boys0406, I'm with you. :D

I feel your frustration. Unfortunately, I don't know how much you can do about it when you are not the patient and the patient is resistant. One thing you could do, if your H agrees, is set up the patient portal at his cacner center and have him allow YOU to access his reports and tests. Maybe you could promise not to discuss it with him unless he comes to a point where a decision about new treatment or tests must be made.

Can you look at your H's first pathology reports and see if they at least note whether they tested for KRAS, dMMR, BRAF?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

Boys0406
Posts: 9
Joined: Mon May 13, 2019 8:56 pm
Facebook Username: dcrase

Re: Possible lymph node metastasis

Postby Boys0406 » Sun May 19, 2019 9:29 pm

Hi boxhill,

I do have his password for the online portal and have looked at his reports and tests. Unfortunately, I haven’t seen anything on KRAS, dMMR, or BRAF, but I’ll double check the pathology report in case I missed it.

One good thing is that we finally have some clarification on the lymph nodes that I was referring to in my original post. My husband’s brother is a radiologist and had read his CT and PET scans back when diagnosed, but when we mentioned the distant lymph nodes to him and our Dr.’s concern, he didn’t know exactly what lymph nodes he was referring to until he went back and read the scans today and asked us to send the reports. He confirmed that the enlarged lymph nodes listed on the report were distant, but just like the oncologist, said we will have to wait and get confirmation on whether they are cancerous. Hopefully, we can schedule a biopsy to find out. I know at one point the oncologist told us it might be a few scans in until we know for sure because cancer or just inflammation from the tumor could have caused them to be inflamed, but that would be awful to not know for another 6 mos.
Wife of DH-46yrs old
DX’d-11/18 rectosigmoid colon cancer
T type-adenocarcinoma
Positive LN-2/59
CEA- 239.8
CDX-2 positive
dMMR-retained nuclear expression of all 4 mismatch repair proteins
T4bN1bM-pm(or listed as n/a, couldn’t biopsy possibly LN)
Stage3c (invaded bladder wall)
11/18-surgery, ileostomy, and removal of back of bladder
12/18-Folfox started (12 cycles)
2/19-CEA 1.1
3/19-blood clot,hospital 3 days
3/19- began Eliquis
5/31/19-Completed Folfox

WarriorSpouse
Posts: 187
Joined: Tue Aug 16, 2016 9:02 pm

Re: Possible lymph node metastasis

Postby WarriorSpouse » Sun May 26, 2019 1:52 pm

Genetic testing is a must, especially if you have children. This can help identify if they are at increased risk as they age.

Also, some CRC respond exceptionally well to new biological drugs that look for unique genetic characteristics. These drugs are not chemotherapy and are very tolerable to the patient, and can provide many years of being NED and a normal life.

Never give up, and always be purposeful in your research and actions. Oncologists have many patients. We have only one spouse to support.
Good wishes and best of luck!
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months) NED 05/2015, Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev, pending genetic results. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Boys0406
Posts: 9
Joined: Mon May 13, 2019 8:56 pm
Facebook Username: dcrase

Re: Possible lymph node metastasis

Postby Boys0406 » Sun May 26, 2019 5:27 pm

Thank you WarriorSpouse. I will definitely ask his oncologist for genetic testing. We have 2 boys ages 13 and 15. We have already been told to be sure they start having colonoscopies at age 25. I appreciate the info on the other treatments as well. I will be sure to look into them as needed. Last chemo for him is Wednesday and scan about 2 weeks after that! Fingers crossed and lots of positive thoughts needed!
Wife of DH-46yrs old
DX’d-11/18 rectosigmoid colon cancer
T type-adenocarcinoma
Positive LN-2/59
CEA- 239.8
CDX-2 positive
dMMR-retained nuclear expression of all 4 mismatch repair proteins
T4bN1bM-pm(or listed as n/a, couldn’t biopsy possibly LN)
Stage3c (invaded bladder wall)
11/18-surgery, ileostomy, and removal of back of bladder
12/18-Folfox started (12 cycles)
2/19-CEA 1.1
3/19-blood clot,hospital 3 days
3/19- began Eliquis
5/31/19-Completed Folfox


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