DH had surgery consult yesterday for para aortic nodes

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CLD
Posts: 204
Joined: Fri Mar 27, 2015 7:16 pm

DH had surgery consult yesterday for para aortic nodes

Postby CLD » Fri Aug 31, 2018 5:13 am

Many members on this board have received care at the big name cancer medical centers... MSKCC, MD Anderson, Mayo Clinic...well yesterday, My DH had an appointment with Dr. David Bartlett at The Hillman Center and it was quite an overwhelming experience. The hospital was run like Grand Central Station and seemed 'chaotic' but my aunt, who is a nurse, came with me and commented "this is controlled chaos!". After being asked a bagillion questions by both the CRNP and the PA, we finally got to meet the dr. Dr. Bartlett was very kind, not rushed, and thorough. The plan they decided on for my husband is as follows: Rescan after the 6th chemo, in 6 weeks. Of concern are the still unexplained micronodular densities in his lungs. Our local pulmonologist, his regular oncologist, and the PET scan do not believe they are cancer, but it must be ruled out before proceeding. Dr. Bartlett can remove the nodes in what would be a 3-4 hour surgery with 4-5 days in the hospital. a 6 week recovery time would be followed with 6 more weeks of chemo. Dr. Bartlett also wants him to see a radiation oncologist so he can know all of his options. Im thinking we will save the radiation option in case inoperable nodes appear in the future, then he wont have radiation toxicity as a limiting factor for future options. Although I was under the impression he would receive the HIPEC treatment, Dr. Bartlett said it does not work on lymph nodes. So, I will keep you all updated on our journey and I wish you all the best of luck in yours.
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes BRAF / KRAS negative
Folfiri and Avastin Aug 2018
CEA:2.9 at recurrence

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CRguy
Posts: 9638
Joined: Sun Feb 10, 2008 6:00 pm

Re: DH had surgery consult yesterday for para aortic nodes

Postby CRguy » Sun Sep 02, 2018 1:26 am

As we all know here ...
plan your work then
WORK YOUR PLAN !!

Best wishes
on the Journey with you
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Brearmstrong
Posts: 67
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: DH had surgery consult yesterday for para aortic nodes

Postby Brearmstrong » Sun Sep 02, 2018 7:17 am

cLD
Sounds like a good plan is in place. My journey is similar and I was fortunate to find a surgeon who would remove the nodes. So far so good as it’s been 3 1/2 months and I am currently on xeloda pills for maintenance. The surgery can be tricky given the location so I am happy that they will go ahead. I too was hoping for HIPEC but got the same explanation-not for lymph node involvement. I still believe that there are cells floating around as my tumor was a T4 but is what it is. Best of luck! Is Bartlett talking of cure?
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3 Jul 18 1.0
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. xeloda 2000mg/day
Aug 18-CT NED!

WarriorSpouse
Posts: 148
Joined: Tue Aug 16, 2016 9:02 pm

Re: DH had surgery consult yesterday for para aortic nodes

Postby WarriorSpouse » Sun Sep 02, 2018 9:10 am

Sorry to read of the reoccurrence. My wife found that 5FU and Avastin took care of her para-aortic lymph nodes without surgery.
PET Scans determined this to put her at NED in 2015. I think once the disease progressed outside of regional lymph nodes it would be correctly staged at IV. This may be beneficial in order to have insurance cover continuous maintenance Zeloda and Avastin treatments after NED is established again. Good luck with the process moving forward.
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

CLD
Posts: 204
Joined: Fri Mar 27, 2015 7:16 pm

Re: DH had surgery consult yesterday for para aortic nodes

Postby CLD » Sun Sep 02, 2018 1:57 pm

Brearmstrong, Dr. Bartlett did not use the word cure, but he said with surgery, " it could go away and never come back or it could come back again." So I guess that's the best we could hope for anyhow. My husband's oncologist said if his scans are clean after he completes chemo he would be done with chemo. But I guess that could change too. Is there any specific reason your doctor keeps you on maintenance chemo?
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes BRAF / KRAS negative
Folfiri and Avastin Aug 2018
CEA:2.9 at recurrence

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chrissyrice
Posts: 1170
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: DH had surgery consult yesterday for para aortic nodes

Postby chrissyrice » Sun Sep 02, 2018 3:48 pm

I had surgery to remove nodes last December. No follow up chemo if clear margins can be obtained. I needed to have several arteries grafted as the lymph nodes had either attached to or spread into the adjoining arteries.

I had chemo and radiation prior to surgery. I would definitely have skipped the radiation if I knew the real risks for tissue damage upfront. I had to have my left kidney removed from the damage.

I had a curative surgery with clean margins so no chemo after surgery.

Best of luck
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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bitchslapped
Posts: 1502
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: DH had surgery consult yesterday for para aortic nodes

Postby bitchslapped » Sun Sep 02, 2018 8:55 pm

My goodness Chrissy! Did they inform you re: tissue damage at all?

CLD,
I wondered if your DH would be candidate for HIPEC, but your doc sent you there...maybe just for the surgery? At any rate, sounds like a good appt!


Brearmstrong, Sounds like good news for you as well. Hadn't read of your surgery!

Best Wishes All
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Brearmstrong
Posts: 67
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: DH had surgery consult yesterday for para aortic nodes

Postby Brearmstrong » Tue Sep 04, 2018 11:57 am

Brearmstrong, Dr. Bartlett did not use the word cure, but he said with surgery, " it could go away and never come back or it could come back again." So I guess that's the best we could hope for anyhow. My husband's oncologist said if his scans are clean after he completes chemo he would be done with chemo. But I guess that could change too. Is there any specific reason your doctor keeps you on maintenance chemo?


CLD- I am on maintenance chemo because my original tumor was through colon and into the appendix. The para aortic nodes are far away from the appendix, thus making it Stage IV. I am told that there is a very high rate of recurrence once in distant lymph nodes and while my surgeon did a great clean up and had clean margins, I am also not a candidate for immunotherapy because of my MSS status. I will stay on xeloda for at least a year and indefinitely if I can continue to tolerate it. If it comes back a third time, I'm out of chemo options ;-(

Barlett is great from everything I've heard about him. Best of luck in the surgery.
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3 Jul 18 1.0
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. xeloda 2000mg/day
Aug 18-CT NED!

rp1954
Posts: 1382
Joined: Mon Jun 13, 2011 1:13 am

Re: DH had surgery consult yesterday for para aortic nodes

Postby rp1954 » Tue Sep 04, 2018 3:58 pm

We've used a different playbook for para-aortic nodes, one where fundamentals, prior successes, logic and economics have more sway.
.
First, we kept as much chemistry on the nodes as possible, continually for years; to a degree even through surgery - not this 2-3-4-6 week standoff stuff, before and after surgery. Of course, there were adjustments in the run up to major surgery.
Second, we shopped until we found people who could advance issues like (potentially involved) lymph node dissection, however irregular to the old ASCO or NCCN algorithms or guidelines. Dr No should never get the last word.
Third, therapeutic nutrition has many answers but it remains a highly fragmented art with greatly different levels of performance possible. I've become an art collector. "Side benefits" instead of "side effects" are a goal.
Fourth, a better multimodal treatment strategy and its implementation are largely driven by self advocacy and homework.

Even the largest, "most advanced" cancer centers have limited menus of what is available or offered globally.

I largely gave up hope of (micro)met clearance 3 years after the last surgery, to remove a conglomerated para aortic node cluster, with no escape from "chemo forever". However my wife didn't. My wife has taken a chemo vacation for at least these last 2 months, and her markers are holding down pretty well.

Brearmstrong wrote:I am told that there is a very high rate of recurrence once in distant lymph nodes and while my surgeon did a great clean up and had clean margins, I am also not a candidate for immunotherapy because of my MSS status. I will stay on xeloda for at least a year and indefinitely if I can continue to tolerate it. If it comes back a third time, I'm out of chemo options ;-(

We live in a different world where there are many immunotherapies, and immunochemo combinations, just not institutionally sponsored ones.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Achilles Torn
Posts: 109
Joined: Fri Dec 16, 2016 2:41 pm

Re: DH had surgery consult yesterday for para aortic nodes

Postby Achilles Torn » Wed Sep 12, 2018 12:52 pm

Sounds like you have a good plan ! Anytime surgery can remove the cancer you have a great chance for a positive outcome.

I had para-aortic nodes at diagnosis and as of my last PET scan in April they are no longer showing up (I'm overdue for a scan now). 5Fu infusions are starting to wear me down so I'm thinking of switching to Xeloda as I want to keep this going as long as possible. If they come back and it is in a limited fashion I'm going to push for surgery.

Keep us updated !

Thanks
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.

Brearmstrong
Posts: 67
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: DH had surgery consult yesterday for para aortic nodes

Postby Brearmstrong » Thu Sep 13, 2018 9:48 am

I had para-aortic nodes at diagnosis and as of my last PET scan in April they are no longer showing up (I'm overdue for a scan now). 5Fu infusions are starting to wear me down so I'm thinking
of switching to Xeloda as I want to keep this going as long as possible. If they come back and it is in a limited fashion I'm going to push for surgery.

AT, I had mine removed (5 of those buggers came back as cancerous) on May 15th of this year and after surgery I started on xeloda pills. Besides really sore and swollen feet, it's night and day for me over 5fu and that dreaded pump. Hoping it's working at keeping it at bay but I almost don't even feel like I'm in treatment since I can just swallow the pills twice a day! I hope they are an option for you and may you stay NED forever!!
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3 Jul 18 1.0
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. xeloda 2000mg/day
Aug 18-CT NED!

gringo51
Posts: 4
Joined: Mon Mar 21, 2016 11:09 am

Re: DH had surgery consult yesterday for para aortic nodes

Postby gringo51 » Mon Oct 01, 2018 10:18 am

After two years of remission my husband had 1 recurrent Para aortic lymph node show on CT and PET this past Feb. Our Oncologist only gave chemo as an option. We sought a 2nd opinion at MSKCC. where the Dr. recommended surgery or SBRT with only one lymph node, so we went ahead with SBRT. Now he potentially has 2 more nodes (pending next scan) and Dr. has taken surgery off of the table. Should we be seeking another opinion still? They want to wait for next scan in Oct to confirm second 2 nodes. Is it possible for lymph nodes to be only reactive to radiation therapy - SBRT?
Wife to DH diagnosed June 2015 age 51.
Stage IIIC Rectal Cancer with regional lymph nodes
FOLFOX 6 months
Chemo Radiation Therapy
Complete Response to treatment - Watch and Wait
NED March 2016 - Feb 2018.
PET Scan March 2018 - single 1cm Para aortic lymph node
Xeloda/Avastin- 2 months, Fail.
2nd opinion at MSKCC suggested SBRT
SBRT July 2018
August CT showed original lymph stable with two additional Para aortic lymph nodes 7mm each
CT scheduled for Oct 2018

Brearmstrong
Posts: 67
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: DH had surgery consult yesterday for para aortic nodes

Postby Brearmstrong » Mon Oct 01, 2018 11:51 am

Gringo, why did MSK say surgery is off the table? Location?
45 F Jan 17 Mom- two boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3 Jul 18 1.0
Oct 2017 clean CT 4mm lung nodule stable,3 new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. xeloda 2000mg/day
Aug 18-CT NED!

gringo51
Posts: 4
Joined: Mon Mar 21, 2016 11:09 am

Re: DH had surgery consult yesterday for para aortic nodes

Postby gringo51 » Mon Oct 01, 2018 1:00 pm

He said that he would only consider if one node... three means it's in his system. There are all fairly close together. I see people with up to 5 para aortic nodes having surgery... so being denied was heartbreaking.
Wife to DH diagnosed June 2015 age 51.
Stage IIIC Rectal Cancer with regional lymph nodes
FOLFOX 6 months
Chemo Radiation Therapy
Complete Response to treatment - Watch and Wait
NED March 2016 - Feb 2018.
PET Scan March 2018 - single 1cm Para aortic lymph node
Xeloda/Avastin- 2 months, Fail.
2nd opinion at MSKCC suggested SBRT
SBRT July 2018
August CT showed original lymph stable with two additional Para aortic lymph nodes 7mm each
CT scheduled for Oct 2018

rp1954
Posts: 1382
Joined: Mon Jun 13, 2011 1:13 am

Re: DH had surgery consult yesterday for para aortic nodes

Postby rp1954 » Mon Oct 01, 2018 2:04 pm

Brearmstrong wrote:Gringo, why did MSK say surgery is off the table? Location?

Conventionally, para-aortic lymph nodes are usually considered systemic, "chemo forever" territory, and futile for radiation or surgery. Since 2010, when we started, the surgical literature has grown. Papers show big improvements are possible with one site only (multiple nodes on a chain, maybe okay) even if chemo is still necessary.

gringo51 wrote:... Dr. has taken surgery off of the table. Should we be seeking another opinion still? They want to wait for next scan in Oct to confirm second 2 nodes.

Are the lymph nodes likely on a single chain? (Ask) See above. Any data on KRAS, CA199, LDH? The surgeons who will operate on PALN are less common and need informed encourgement. They want to see slow growing cancer, or some ability to control or slow the spread. In our case, the 1-2 surgical teams willing were the surgical department heads for the two best regional hospitals. From our perspective, the best chemo answer, surgery or not, was to amplify less toxic chemistry components (several years previous discussion) and use them continuously even close in to surgery, before and after. So my wife has been their longest living such patient, for years now.

The surgeons don't like peri-operative 5FU chemo, but it has been done successfully in a number of papers and studies, mostly Japanese papers. So we did it too, with extra attention to surgical preparation, recovery, and wound healing supernutrition, with all the dark arts like IV vitamin C, etc.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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