2 swollen nodes in abdomen...

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jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

2 swollen nodes in abdomen...

Postby jep » Thu Sep 20, 2018 9:04 pm

Hey everybody,
So, despite his stage 4 status, my husband has been doing great...we met with his onc in early September and all bloodwork/numbers were so good the onc didn't think a scan was necessary.....I pushed for one (as it had been nearly 9 months) and he scheduled a CT scan. We got the results today and my man has 2 swollen lymph nodes in his abdomen....1 is "pretty big"....I'm trying not to freak, and I have searched for similar threads....just wondering if anyone has some insight....the onc wants him to come in right away (as in tomorrow)...and most likely do a pet scan....maintenance chemo is also looking like a go.... please let me know your thoughts...
Thank you all!
Jep
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed
PET Scan 10/17/18: 3 positive lymph nodes
Irinotecan + Vectobix (started in November 2018)

WarriorSpouse
Posts: 157
Joined: Tue Aug 16, 2016 9:02 pm

Re: 2 swollen nodes in abdomen...

Postby WarriorSpouse » Fri Sep 21, 2018 6:17 am

Sorry to read this Jep.

I would suggest getting the PET scan as directed and taking the results to a major cancer center near your home. Dana Farber (Boston), Sloan Kettering (NYC), or MD Andeson (Houston). The large centers see more and support aggressive treatment plans. Much has changed in the use of maintenance chemo / Avastin treatments in recent years. Do not be afraid of this chemo for life concept. It allows a good quality of life considering the circumstances of the disease.

Good luck in your process moving forward. Keep us posted as you learn more.
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

Re: 2 swollen nodes in abdomen...

Postby jep » Fri Sep 21, 2018 7:33 am

Thank you Warrior Spouse . . . yes, we have been thinking about returning to MSK . . . we did an initial consult with an onc there and she told us to get back in touch if we ever hit a crossroad . . . we have an appt this afternoon with my husband's oncologist . . . he wants to do a PET scan and I believe start maintenance chemo. My husband's incision area has blistered up and popped 3 or 4 times over the past year . . . I'm wondering if maybe this could be linked to the swollen nodes? Maybe that's just wishful thinking . . . if anyone else has advice or insight PLEASE chime in.
Thanks so much!
Jep
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed
PET Scan 10/17/18: 3 positive lymph nodes
Irinotecan + Vectobix (started in November 2018)

martd
Posts: 61
Joined: Tue Nov 21, 2017 3:48 pm

Re: 2 swollen nodes in abdomen...

Postby martd » Fri Sep 21, 2018 12:01 pm

I don't have experience with that type of incision but I have had internal stitches fester up through my incision. Thought this might help. Good luck to you, hope your appt goes good.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

Re: 2 swollen nodes in abdomen...

Postby jep » Fri Sep 21, 2018 12:21 pm

martd wrote:I don't have experience with that type of incision but I have had internal stitches fester up through my incision. Thought this might help. Good luck to you, hope your appt goes good.

It's interesting that you mention this . . . one of the nurse's at our surgeon's office thought there might be a stitch (she used "suture") that is causing an issue with his incision site . . . I wonder if that could be connected to the swollen nodes . . . :(
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed
PET Scan 10/17/18: 3 positive lymph nodes
Irinotecan + Vectobix (started in November 2018)

Beloved fiancée
Posts: 7
Joined: Mon Jan 22, 2018 1:47 pm
Facebook Username: Silianai

Re: 2 swollen nodes in abdomen...

Postby Beloved fiancée » Fri Sep 21, 2018 1:45 pm

Hi, I’ve there and it was the worst nightmare. My fiancé had his CT scan after he completed his Folfox regimen. The Ct scan showed several prominent lymph nodes at the mesenteric. He did an PET scan and all came bame back negative. He did not eat anything sweet for almost 48 hours prior to the PET. Please see my signature.
Best of Luck,
Vana
Diagnosed 0ct 2017 colon Cancer
Procedure: right hemicolectomy
Stage: 3BT4 Mucinous with Signet-Ring Cell poorly differentiated. :(
Treatment: Started Jan. 2018 Folfox
Ct scan July 2018: clear with prominent mesenteric 11X9 mm
Pet scab Aug 2018: CLEAR
Now and Forever Cured! Thank to the LORD

clj12288
Posts: 7
Joined: Tue Dec 12, 2017 11:09 am

Re: 2 swollen nodes in abdomen...

Postby clj12288 » Sun Sep 23, 2018 9:06 pm

Jep,
I am sorry to hear about this discovery. I am hoping it's not abdominal lymph nodes. However, if they are, I want to give you some info because I have experience with it.

Mine have only been detected by PET scans - never big enough by CT criteria to be seen. So, I've had PETs every 2-3 months since July of 2015. Mine are considered retroperitoneal & para-aortic, and common illiac. If you do a search - it is somewhat rare. At least rare to have these lymph nodes and not other organs involved. We have blasted mine with 30 rounds of chemo, radiation, and surgery - and they continue to persist. Next steps are to try an EGFR inhibitor chemo. I have been fortunate to keep them relatively contained - although recently a node popped up in my supraclavicular (neck) region. But considering these first showed on a scan in July of 2015 - it's not lost on me I've been relatively lucky to only have these for the past 3 years.

I would suggest taking an aggressive treatment approach and making sure your doctor is in line with that approach. Don't let any doctor tell you that this means chemo for life...it may mean chemo for now until better options come along. Let me know if you have any questions.

Best of luck,
clj12288
clj, 30
dx '14, stage IIIc sigmoid cc
colectomy, 12 folfox
7/15, stage IV, met to liver, retroperitoneal/para aortic LNs
8/15 - 11/15: folfiri + liver resection
2/16: 14 5FU + avastin & 4 folfiri +avastin
12/16 -2/17 - PA LN removal (5/10 LNs +) & 25 tx radiation
12/17 - PET confirms metastasis to right common illiac node, uptake in PA LNs
14 folfiri + avastin
9/18: Pet progression, left supraclavicular node, biopsy + for mets
Begin folfiri + vectibix
CEA: not useful. 0.9 now
KRAS wild type, MSS

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: 2 swollen nodes in abdomen...

Postby rp1954 » Mon Sep 24, 2018 3:41 am

We opted for daily oral chemo beyond ADAPT, with mild extras to control spread and para-aortic LN before a surgery for the PALN. We also applied this oral chemo after surgery. For us, this also had the advantage of chemo much closer in to abdominal surgery, so the cancer cells just never got a break from chemo(s) exposure, unlike regular chemo-surgery sequences.

An important "extra points" question for you right now is CA199 and KRAS status. Our experience is that is possible to better target and beat conventional chemo for control and quality of life with better bloodwork and data.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

Re: 2 swollen nodes in abdomen...

Postby jep » Mon Sep 24, 2018 3:53 pm

Thank you clj and rp ....my husband's oncologist feels that the swollen lymph nodes might be a result of persisting issues with my husband's incision site and a fistula that we thought was totally healed (but might not be)....his onc said that we need to figure out exactly what's going on....so, he is working with our surgeon to possibly biopsy a node (or maybe do some other type of exploration)....we discussed starting chemo, but onc is uncertain about starting Avastin w/o knowing exactly what's going on....he also said he doesn't want to treat my husband with chemo if it's not necessary....all other markers have been great....so, here we are....meeting with surgeon this week and looking for answers/direction....thoughts???
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed
PET Scan 10/17/18: 3 positive lymph nodes
Irinotecan + Vectobix (started in November 2018)

jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

Re: 2 swollen nodes in abdomen...

Postby jep » Mon Sep 24, 2018 4:44 pm

One more thing...the oncologist wants to hold off on the PET scan for now, as infection/inflammation can light up....so best to wait until the surgeon checks him out (???)
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed
PET Scan 10/17/18: 3 positive lymph nodes
Irinotecan + Vectobix (started in November 2018)

jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

Re: 2 swollen nodes in abdomen...

Postby jep » Tue Sep 25, 2018 8:47 pm

Hey everyone....another update on my husband....his surgeon reviewed his last 2 CT scan and feels that the fistula is closed....surgeon and oncologist spoke and they agree that the swollen lymph node should be biopsied....I read a bit about this online....does anyone have experience with this type of biopsy? Still clinging to the possibility that the abdominal nodes are swollen for some other reason.... :(
Thanks to all...
jep
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed
PET Scan 10/17/18: 3 positive lymph nodes
Irinotecan + Vectobix (started in November 2018)

clj12288
Posts: 7
Joined: Tue Dec 12, 2017 11:09 am

Re: 2 swollen nodes in abdomen...

Postby clj12288 » Thu Sep 27, 2018 9:01 pm

Hi jep,
Still a possibility that the nodes are due to inflammation. But the biopsy is the only way to be 100% sure. PETs can definitely show false positives and any surgeon would be hesitant to do it shortly after surgery because of the inflammation and the healing process of the tissues. After my PET scan that showed some nodes lighting up in the abdomen, they wanted to be sure, so did a CT-guided biopsy where they essentially used an interventional radiologist to use imaging to find the proper node that had lit up. It was an outpatient procedure, there was some anesthesia involved. It was relatively painless and it was the best way to confirm what was going on and to get the right treatment plan started. Best of luck to your husband and you. The unknown can actually be worse than knowing in my experience because then you can get a plan in place.
clj, 30
dx '14, stage IIIc sigmoid cc
colectomy, 12 folfox
7/15, stage IV, met to liver, retroperitoneal/para aortic LNs
8/15 - 11/15: folfiri + liver resection
2/16: 14 5FU + avastin & 4 folfiri +avastin
12/16 -2/17 - PA LN removal (5/10 LNs +) & 25 tx radiation
12/17 - PET confirms metastasis to right common illiac node, uptake in PA LNs
14 folfiri + avastin
9/18: Pet progression, left supraclavicular node, biopsy + for mets
Begin folfiri + vectibix
CEA: not useful. 0.9 now
KRAS wild type, MSS

jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

Re: 2 swollen nodes in abdomen...

Postby jep » Fri Sep 28, 2018 2:43 pm

clj:

Thank you so much for your reply. My husband's surgeon and oncologist work very closely together and they both agree that we need to biopsy. It sounds like he will have the same procedure that you had . . . it's scheduled for this Wednesday morning. I'm just hoping we get the results ASAP. Do you remember how long it took for you to get results? Hoping and praying for the best news . . . will keep you posted.
thx,
jep
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed
PET Scan 10/17/18: 3 positive lymph nodes
Irinotecan + Vectobix (started in November 2018)

Stewsbetty
Posts: 136
Joined: Thu Jul 14, 2016 7:08 am

Re: 2 swollen nodes in abdomen...

Postby Stewsbetty » Sat Sep 29, 2018 6:43 am

clj12288 wrote:Jep,
I am sorry to hear about this discovery. I am hoping it's not abdominal lymph nodes. However, if they are, I want to give you some info because I have experience with it.

Mine have only been detected by PET scans - never big enough by CT criteria to be seen. So, I've had PETs every 2-3 months since July of 2015. Mine are considered retroperitoneal & para-aortic, and common illiac. If you do a search - it is somewhat rare. At least rare to have these lymph nodes and not other organs involved. We have blasted mine with 30 rounds of chemo, radiation, and surgery - and they continue to persist. Next steps are to try an EGFR inhibitor chemo. I have been fortunate to keep them relatively contained - although recently a node popped up in my supraclavicular (neck) region. But considering these first showed on a scan in July of 2015 - it's not lost on me I've been relatively lucky to only have these for the past 3 years.

I would suggest taking an aggressive treatment approach and making sure your doctor is in line with that approach. Don't let any doctor tell you that this means chemo for life...it may mean chemo for now until better options come along. Let me know if you have any questions.

Best of luck,
clj12288


Hello CLJ,

We share some commonalities. I am one of the weird LN met people. Mine started in retroperitoneal area, spread to thoracic and then up to my left supraclavicular node. Thought it was interesting that it went to the left and not the right in the neck.
Not similar in that chemo didn’t help me and my spread was very rapid. Thankfully immunotherapy is working really well for me now.
Sure hope that between surgeries and treatment you can diminish or keep your disease contained.

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

pantufla
Posts: 133
Joined: Thu Dec 03, 2015 12:44 pm
Facebook Username: kelleykulina

Re: 2 swollen nodes in abdomen...

Postby pantufla » Wed Oct 10, 2018 4:54 pm

Hi JEP,

I'm responding to this post instead of today's post.

I don't know a lot, but it seems a lot of people on this board survive on maintenance chemo if surgery is not an option.

You said, "one of them is pretty big." Did they ever give the size of it? If you see my signature line, you'll see why I'm curious.

Thanks so much. :)

Kelley
DH T2 N1b M0. 3/15 positive nodes.
Stage IIIA moderately differentiated adenocarcinoma.
Tumor size 6 cm.
Left hemicolectomy 10/26/15.
FOLFOX 11/30/15 to 5/2/16, full 12 cycles.
Lynch negative.
10/3/16 CT scan clear.
11/10/17 CT: "Focal opacity along the left lower lung, 7 mm. Two small peripheral opacities along the right lower lobe, 2 to 3 mm. A few small to mildly prominent left-sided central mesenteric nodes, up to 13 mm. There are subcentimeter retroperitoneal lymph nodes."


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