Just Diagnosed. 19-24 lymphs. Need advice

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Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Just Diagnosed. 19-24 lymphs. Need advice

Postby Achilles Torn » Tue Dec 20, 2016 11:44 pm

Hi Everyone,
I am a newbie to this having just been diagnosed after pathology with T3N2M0. So IIIC but with 19 of 24 Lymph Nodes Positive. Had sigmoid resection 2 weeks ago and have not had a meeting with an oncologist yet. Had a CT just before surgery that showed no mets (but not super confident in just a CT). From my own looking around 19 of 24 is the highest lymph involvement I have seen which isn't bolstering me much. My question is: with such a high ratio of positive nodes is it an option to have further surgery to remove more nodes ? I'm worried that with about 80% of nodes positive there might be some left that should be surgically removed.

I'm 40 year old male.


Thoughts ?
Diagnosed as 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 + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

Pat
Posts: 25
Joined: Fri Jan 15, 2016 6:21 pm
Facebook Username: Pat Henderson Sins
Location: Southern California

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby Pat » Wed Dec 21, 2016 2:47 am

I had 25 of 30 nodes positive for cancer. So far I am NED and hope to stay that way.
57 yr old. Dx 9/2015, Stage IIIc T4aN2bM0 BRAF/V600e
10/2015 Right Hemicolectomy
High Grade, poorly differentiated Adenocarcinoma of the Hepatic Flexure
25 of 30 lymph nodes cancerous extranodal extension
Barrett's Esophagus
11/2015 Folfox 12 cycles stopped 3x for month each due to low blood counts
7/30/2016 - finally finished Folfox
9/15/2016 - Clear colonoscopy, 1 sessile polyp
9/7/2017 - clear colonoscopy, next due in 3 yrs

User avatar
Green Tea
Posts: 462
Joined: Mon Oct 24, 2016 10:48 am

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby Green Tea » Wed Dec 21, 2016 3:12 am

Was your resection a Left Hemicolectomy?

I think it would help if you could create a signature block here to give people the basic information on your situation.
A link to the signature creation page is here

http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

The kinds of things that you might want to put in your signature are listed in this post:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597


Once you create your signature you should update it each time you have additional, relevant information to add.

Alessandria
Posts: 37
Joined: Wed Apr 06, 2016 3:18 am

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby Alessandria » Wed Dec 21, 2016 3:42 am

It might be a good idea to get a PET scan- I had more distant lymph nodes affected and they were only picked up on PET.

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby Achilles Torn » Wed Dec 21, 2016 3:43 am

My colectomy as about 9inches of sigmoid colon so that would be the left side I believe.

Sorry I'm a little low on details. I just want to be prepared to be my own best advocate.

Anyone have thoughts on asking for additional surgery to remove more lymph nodes ?
Diagnosed as 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 + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

plastikos
Posts: 351
Joined: Wed Jan 14, 2015 6:09 am

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby plastikos » Wed Dec 21, 2016 4:23 am

I think the best option now would be to start chemotherapy. Unless it's standard procedure where you had it done, request to have your tumor tested for KRAS, MSI status. A PET this early post-op would have areas of inflammation lighting up all over and would not be accurate. Maybe sometime during chemotherapy would be more appropriate.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby stu » Wed Dec 21, 2016 4:51 am

Hi,
Just to add another angle . My mum was stage 4 at the point of detection . A significant spread was already in her liver , the largest being the size of a small orange. The lymph nodes around her bowel tumour were enlarged and reactive. She went straight to chemo , which worked well on these fast growing tumours. Surgery was then possible... no cancer cells were detected after surgery in her lymph nodes. Maybe chemo did a great job . Who knows but getting a baseline pet scan if possible could be a clever plan and a reassuring one. Funny enough a pet has only ever confirmed what the ct was showing for my mum but everyone is different and it's good to get a baseline assessment .
I wish you the best,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby teri3 » Wed Dec 21, 2016 8:23 am

I'm in agreement with Plasitkos. I'm betting your oncologist wants you to start Folfox chemo. that should help mop up any residule cancer cells. Also like Plastikos said demand testing for MSI and Kras, these are very important on how they treat your cancer. Good luck!!
Hugs,
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

Alessandria
Posts: 37
Joined: Wed Apr 06, 2016 3:18 am

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby Alessandria » Wed Dec 21, 2016 9:39 am

Correct me if I'm wrong, but kras, braf testing doesn't make any difference to adjuvant chemo, you just get folxfox/capox. Which is why it's important for any metastatic disease to be picked up, and then other treatments like avastin, cetuximab can be added, depending on the kras, braf testing. Again, correct me if I'm wrong.

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby fumaros » Wed Dec 21, 2016 6:09 pm

You should probably wait for the result of a PET Scan before requesting further surgery. When the surgeon cuts out the cancer tumor, they take all the lymph nodes attached to it. So he can't randomly take out more lymph nodes without some prior awareness of where the tumors are. Besides, if you undergo surgery right now, you will push back when you can start chemo as your body will need to heal sufficiently before chemo can begin.

I know you are anxious, but an oncologist at MSKCC told me that sigmoid colon cancers tend to be less aggressive. The chemo will take care of the any tumors and metastasis that the surgeon and CT and PET scan can't see.

Patience is a big part of the approach to cancer.

All the best on this journey, try not to give in to worry, and focus on healing and getting ready for what''s next.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby DarknessEmbraced » Wed Dec 21, 2016 6:32 pm

I can't answer your question regarding lymph nodes but just wanted to welcome you.*hugs* I'm sorry for your diagnosis.*hugs* I had half of my sigmoid and half of my rectum removed. Stage 2a, T3N0M0, no chemo, have been NED since surgery. Lymph vascular invasion undetermined. I hope that your 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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby jdepp » Wed Dec 21, 2016 9:00 pm

I was diagnosed with 19 infected lymph nodes, too. Maybe we can start a club?

My advice is to let the chemo do its work. A lot of treatments are in development now and might well mature by the time you need them.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby Achilles Torn » Wed Dec 21, 2016 9:09 pm

Thanks so much for all the responses. I apologize for being so clueless but there is so much to digest. I probably should just be waiting to speak with an Onc. but can't seem to drive the questions out of my mind. I will definitely be seeking full chemo. My pathology report has a lot of scary comments in it (even beyond the 19 positive Lymph Nodes) so I am sure I won't be turned down :)

With this pathology I am worried about Lymph nodes having already spread (not to mention having one swell up behind my knee about 4 nights after surgery and then go away which I put down to a response to the removal of the others)

Does anyone know how much time after surgery you would need to have the PET scan be effective. I am only 12 Days out now so I am guessing more like a month (around the time Chemo should start from my understanding)

Thanks so much

AT
Diagnosed as 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 + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

rp1954
Posts: 1857
Joined: Mon Jun 13, 2011 1:13 am

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby rp1954 » Thu Dec 22, 2016 4:29 am

I agree with plastikos to begin testing asap. Getting and using molecular information is a key to survival in advanced CRC.

A lot of patients dx'd stage IIIc are either already metastatic or will be, tissue KRAS and serum CA19-9 are big clues. Stage IV's initially (mis)diagnosed as IIIc are not that uncommon either, changed with more information later. The high lymph node count is certainly a risk factor. Also high lymph node activity tends to be associated with some CA19-9 elevation (above 22). In any case, we got the CA19-9, ESR, CRP, and LDH (a really cheap biomarker that can be added to the standard monitoring package) done sooner than "standard" and profited from the extra information. I don't even trifle with oncologists that can't get this much done. The more data you can compare from before chemo, the more effective your treatment choices are likely to be.

Also we have seen benefit from permanent, daily 5FU combination treatments on lymph nodes asap until they could be cut out, or suppressed by the combination of chemo, targeting and immunotherapies. Some ADAPT (xeloda+celebrex) patients with active lymph nodes may have seen a long term benefit, too. You might review the CT archives here on ADAPT. There are several inexpensive adjuncts that help prevent or suppress metastasis even before stage IV.
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

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: Just Diagnosed. 19-24 lymphs. Need advice

Postby Wonderfullymade » Thu Dec 22, 2016 9:10 am

I had a lot of nodes too after each of my surgeries ( just didn't bother to put it in my sig) and am still fighting them, in my case the suggested course of treatment is chemo/immunotherapy, not surgery.
I wish you all the best and will keep you in my prayers! Try to stay positive there really are a lot of new treatments out there and new ones in the works!
Wonderfullymade
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1


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