lymph node tested positive :(

Please feel free to read, share your thoughts, your stories and connect with others!
jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

lymph node tested positive :(

Postby jep » Wed Oct 10, 2018 10:31 am

My husband finally got the results from his biopsy today . . . the lymph node tested positive for cancer :evil: . . . they want to do a PET scan to see if hopefully it's just this one node, and maybe it can be surgically removed . . . I don't know what else to say . . . my husband is so strong and just takes all of this in stride and I am not doing as well . . .
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: lymph node tested positive :(

Postby jep » Wed Oct 10, 2018 11:01 am

If you have any suggestions as to what we should ask the oncologist, please share them!
thank you everyone . . .
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)

Achilles Torn
Posts: 113
Joined: Fri Dec 16, 2016 2:41 pm

Re: lymph node tested positive :(

Postby Achilles Torn » Wed Oct 10, 2018 1:31 pm

There is every reason to have hope for a positive outcome for your husband. Surgery still may be an option and if not, then systemic treatments may be very effective. There are several examples on this board of people with lymph node mets that have been going strong for many years and tolerating treatment well.

As for questions for the Onc....I would ask about complete genetic testing (if that hasn't been done). The more you know the better.

Hope that helps
AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

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

Re: lymph node tested positive :(

Postby jep » Wed Oct 10, 2018 2:09 pm

Thank you AT . . . for both the optimism and the advice.
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)

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

Re: lymph node tested positive :(

Postby rp1954 » Fri Oct 12, 2018 12:46 am

oral chemo+supplemental chemistry asap, + 2nd surgery + later adding celecoxib (from ADAPT) is what we did.

I do suggest noting CEA, CA199, LDH as minimal markers for this approach if they are even "average" - e.g. CA199 over 12 or 22 and LDH over 170. We do something more like CBC and extended panels for chemistry e.g. you might ask for a CBC+Chem 25 or 26 and see what they offer. We just order them ourselves.

Slightly improved lab work can steer you better with ADAPT and other nicer chemistry.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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

Re: lymph node tested positive :(

Postby clj12288 » Tue Oct 16, 2018 9:00 pm

Jep, I am so sorry. But, as AT mentioned please have hope as there are a good number of us here with positive distant lymph nodes that are doing ok and have been for several years.
You will see from my signature - I've tried a lot. Surgery - chemo - radiation - more chemo. You will have more information after the PET and that will help direct which way you can go. The problem with surgery - and believe me, I have wanted surgery every scan, and still do - but I know that surgery will get whatever we see on the scan - but it can't get those microscopic cells that aren't on the scan. So, that's where chemo comes in. I have heard from several experts, that the bigger concern in distant lymph node mets is not the actual lymph nodes we see, but rather those cells floating around that could spread to a vital organ. So, if it is a solitary node - and resectable - that is wonderful. But it will be ok if it's not because chemo is a good option. Folfiri + Avastin worked well for me for several years. I am not Folfiri + Vectibix. Has your husband had mutational testing? Is he KRAS wild? If so, I would ask about an EGFR inhibitor such as Vectibix or Erbitux. I am just starting that now, but I know they are using it in the first line setting as well for KRAS wild, especially left sided cancers. I would also ask for CA19-9 in additiona to CEA as there is some evidence that can be useful in lymph node mets. My CEA is not an indicator (always been below 2.5 after initial colon resection) but CA19-9 has been elevated.
Sending lots of hope you to you and yours!!!
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: lymph node tested positive :(

Postby jep » Wed Oct 17, 2018 9:14 pm

Thanks clj! So much useful info in your post and it made me feel better....pet scan was this morning and we should know more in the next day or so...will keep you posted as we learn more...
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: lymph node tested positive :(

Postby clj12288 » Fri Oct 19, 2018 7:40 am

Jep
Please do keep me posted and if there is any more advice or questions I can answer I would love to help!
CLJ
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: lymph node tested positive :(

Postby jep » Fri Oct 19, 2018 2:25 pm

Thank you so much!! We are still waiting to hear back regarding Wednesday's PET scan....I thought we would have heard by now....
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)

AppleTree
Posts: 247
Joined: Fri Mar 18, 2016 8:16 am

Re: lymph node tested positive :(

Postby AppleTree » Mon Oct 22, 2018 3:32 am

Well today is Monday, so fingers crossed the PET is read and you will be given some options to think over. It must have been a long weekend for you.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

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

Re: lymph node tested positive :(

Postby jep » Mon Oct 22, 2018 4:49 pm

Yes, we finally got the results of the PET scan this afternoon . . . my husband has 3 affected lymph nodes . . . 2 in the abdominal area and 1 in his arm pit . . . I haven't been able to talk with the doctors yet, but I will definitely be there to speak with his oncologist. Apparently this means chemo (which we figured), but we were kind of hoping it would only be 1 (or maybe 2) that could be surgically removed. After my husband's surgery (May 2017), we met with a doc at MSK. She told us to do chemo locally because the protocol was the same, but to definitely contact her if we hit a crossroad . . . well here we are. I'm having my husband's records forwarded to MSK and we're going to make an appointment to see what the doc there recommends . . . any advice/insight is greatly appreciated . . .
Thanks for being there for us for the past year and a half . . .
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)

AppleTree
Posts: 247
Joined: Fri Mar 18, 2016 8:16 am

Re: lymph node tested positive :(

Postby AppleTree » Mon Oct 22, 2018 8:27 pm

Was his 1st scan really just this past week?

I am on a 3 month schedule of PET scans.

But ok. What to do next? Yes, make the plan. I got 2nd opinions at Mass Genersl and then had chemo on Cape Cod since it was the same formula. The surgery for my lung was done at Mass General.

3 nodes might respond very well to chemo. And then be insistent about follow up CT or PET scan. Now you have the results you can move foreard.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

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

Re: lymph node tested positive :(

Postby jep » Mon Oct 22, 2018 8:55 pm

Hi Appletree...no, this was not his first scan....he had a PET scan after surgery (June 2017) which was clear...he also had a CT scan January 2018 (also clear)....all is his bloodwork had been excellent and his oncologist didn't think he needed this most recent scan, but I pushed for it...yes, we're hoping that these nodes will respond well to the chemo, but we're also pursuing other opinions...we haven't even met with his oncologist yet, so I'll be very interested to hear what he has to say...
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)

DarknessEmbraced
Posts: 3177
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: lymph node tested positive :(

Postby DarknessEmbraced » Tue Oct 23, 2018 12:09 pm

I'm sorry it wasn't better news and hope his chemo goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

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

Re: lymph node tested positive :(

Postby jep » Tue Oct 23, 2018 5:18 pm

So my husband's oncologist called him tonight and gave him his suggestions for the next chemo regiment: 5fu + Avastin + leucovorin (12 rounds). Apparently the 1 node that was biopsied is the larger one (in his abdominal area) . . . the other 2 (including the armpit node) are very small . . . his doc suggested completing the chemo regiment and then possibly pursuing radiation to blast the nodes (?) . . . I've read some troubling stories about the effects of radiation on other organs (possibly) . . . can anyone advise on any of this? Still planning on a second opinion, but it feel a little bit better to have 1 possible plan in place . . . you guys are amazing . . . thanks for listening . . . I can't really talk too much about this at home because we don't want to upset the kids . . . and work is kind of the same . . .
thank you!
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)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Brearmstrong and 47 guests