Feeling hopeless. Para aortic nodes-inoperable?

Please feel free to read, share your thoughts, your stories and connect with others!
Brearmstrong
Posts: 31
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Feeling hopeless. Para aortic nodes-inoperable?

Postby Brearmstrong » Sun Dec 03, 2017 12:31 pm

I had a PET scan last week and you can see the history below. Sloane Kettering is reviewing my case as I am starting process to seek second opinions. I meet with my oncologist this week but initial call from him sounds like folfri with avastin for life and now says I am inoperable and incurable. I am just devastated and cannot seem to handle this new progression. Tumor board reviewing my info Tuesday but all I read is that too dangerous to remove. Anyone have better outcome? I did search and read older posts but anyone know a progressive surgeon that may take on a challenging removal? I don't know how large yet. Thanks for listening.
:cry: 45 Female Jan 2017 after appendectomy
DX: (CC) tumor started in appendix and went through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
No mutations
FOLFOX Apr-sept 2017
Clean CT scan Jul 2017 watching one small lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1.
Oct 2017 clean CT 4mm lung nodule stable, new 2 mm nodule.
Nov 17 PET shows para aortic nodes uptake. Stage IV :(

User avatar
susie0915
Posts: 551
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby susie0915 » Sun Dec 03, 2017 2:10 pm

Brearmstrong wrote:I had a PET scan last week and you can see the history below. Sloane Kettering is reviewing my case as I am starting process to seek second opinions. I meet with my oncologist this week but initial call from him sounds like folfri with avastin for life and now says I am inoperable and incurable. I am just devastated and cannot seem to handle this new progression. Tumor board reviewing my info Tuesday but all I read is that too dangerous to remove. Anyone have better outcome? I did search and read older posts but anyone know a progressive surgeon that may take on a challenging removal? I don't know how large yet. Thanks for listening.

I am so sorry. I don't have any answers for you. I hope you can get some here. Many stage 4 here that may be able to help. I'm praying for you
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

cbsmith
Posts: 47
Joined: Sat Nov 28, 2015 11:45 am

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby cbsmith » Sun Dec 03, 2017 2:34 pm

I had spread to a para aortic lymph node and then lung mets. Once the lymph node showed up it was declared inoperable and chemo for life. I had opinions from 2oncologists and 2 surgeons and all said the same thing. I’ve been doing folfiri + avastin since the fall of 2015 and just stopped it last week as my latest ct scan showed growth so we are looking at other options now.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby Lee » Sun Dec 03, 2017 5:54 pm

I am so sorry to read this. I hope Sloan Kettering can come up with a plan of action in dealing with this. The unknown is always the hardest part when dealing with this cancer. I don't have any real advice, butt wanted to give you a virtual hug.

(((Brearmstrong)))

You are in my thoughts and prayers,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Zig2017
Posts: 59
Joined: Tue Sep 26, 2017 12:26 pm

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby Zig2017 » Sun Dec 03, 2017 6:18 pm

Hi there, I'm so sorry about your news of progression. My husband also was IIIC and had progression on FOLFOX. He is now on clinical trial at Sloan Kettering, as he has the BRAF mutation. I want to send you a message of hope! Although yes, there is spread, I'm happy to see that you are seeking a second opinion. Sloan Kettering is one of the best, and sometimes when you get a second set of clinicians/doctors looking at your reports they might have a new or different approach. There's always hope. And I believe with all the new trials and medicines they are coming up with, even targeted therapies. Are they thinking of radiating the area? Or new drugs? Anyway, just want to lend some hope as they are coming up with new stuff all the time! Please don't feel discouraged, easier said than done, I know. It's a crazy time right now for you but once a plan is in place you will feel more in control. Don't let ANYONE steal your hope! Much love and gentle hugs to you, Mrs. Ziggy xoxoxo
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby Lee » Sun Dec 03, 2017 6:36 pm

Have you considered immune therapy? Maia might be able to help you if you are thinking about it. Keytreda helped BeansMama when all tradition chemo failed here. She went from surgery not an option, to now recovering from her surgery.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

rp1954
Posts: 1205
Joined: Mon Jun 13, 2011 1:13 am

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby rp1954 » Sun Dec 03, 2017 7:03 pm

I got my wife's para aortic lymph nodes removed after several turndowns in 2011. There are several hurdles and they are as much or more about defensive medicine, skill, experience and adequate multimodal treatment planning, as any possible net surgical benefit/risk to you. We found a highly rated surgeon who had removed para-aortic lymph nodes many times for ovarian cancer patients and was willing to invest in our story.

First, surgeons and oncologists typically presume that p-LN have multiple metastatic sites or seedlings and that you will be on chemo for life anyway, with or without a surgery. So surgically futile in their eyes. What they fail to realize, is which chemo for control of fewer and smaller sites can be a huge difference. Of course our brand of oral chemo only cost $150-$200/mo in 2011 and oncologists couldn't be bothered either. (actually they actively ostracized any dr who did since the 1980s - it would destroy their IV services - I've been cited several examples by drs who were there). The off label generic drugs and immune supplements, ha-ha, oncs always laugh first. By the weeks before surgery, any time I talked with surgeons or insurance, I carefully called this a solitary p-LN site because there were papers by 2011 that showed some success with surgery on solitary para-aortic LN sites. ("it's operable", they may need a little guidance)

Second, they worry about the proximity of the major blood vessels. An MDA alum, a thoracic surgeon, turned me down. He cited concern that there might be involvement of the node(s) with the major vessel. I re-interviewed a week later, and told him our radiologist (with some MDA associations) said that the mass was separated - the surgeon changed his tune and said yes. However, with the surgical team at another hospital, the lead surgeon had said no insurmountable problem in any case and was prepared to remove involved mets and repair the major vessel if necessary !

Third they are worried about surprises. Since my wife had earlier peritoneal involvement they were especially concerned that about disqualifying mets being found during the surgery, an "open and close" situation. I cited the advantages my wife had had chemo wise, and her scans' absence of evidence of spread. In actual fact, the physical mass was a lot larger than the scans showed, and what the drs assumed was a solitary node, was an LN cluster with extensions - bad news in their eyes - but the surgery was already done.

Fourth, we ran various (milder) cancer related treatments as close to surgery as possible, hours and days, not weeks or months, before and after. We even got the surgical team to accept cimetidine for the surgery itself as a replacement drug to the usual proton pump inhibitor.

In 2011, this took homework, practice on interviewing skills, and shaping perceptions with several sets of drs. Each option was explored with multiple opinions and papers and it paid off. The surgeon did require us to interview their oncologists on both chemo and radiation since surgery was usually last in consideration.
Last edited by rp1954 on Sun Dec 03, 2017 8:19 pm, edited 1 time in total.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

veckon
Posts: 112
Joined: Thu Jul 27, 2017 7:44 am

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby veckon » Sun Dec 03, 2017 8:18 pm

Never give up hope. Incurable doesn’t mean untreatable. Treatment for us at stage IV is all about global control of the disease. If you can achieve some level of control from treatment, you can live for many, many years. Life slowly adapts to the new normal.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

User avatar
bitchslapped
Posts: 1360
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby bitchslapped » Mon Dec 04, 2017 12:56 am

A big blow for you, but the fact that you have the opportunity for 2nd opinion @ Sloan is good. Hold onto hope even if not a surgical candidate now. Some good input here from folks. Also like Veckon's point.

Keep us in the loop.

Big Hugs
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
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

Stewsbetty
Posts: 101
Joined: Thu Jul 14, 2016 7:08 am

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby Stewsbetty » Mon Dec 04, 2017 1:59 am

I am sorry you received this news. Pretty tough stuff to deal with. You don’t mention your MSI status in your signature. I am MSI high. This summer I had multiple involved nodes that were growing very quickly. It went from one in April to numerous infected by July. After 2 treatments with folfiri it was evident that it failed. I had very little hope for a good outcome but I pushed for immunotherapy. After 3 rounds all of my nodes had shrunk around 50% and the largest much more! I am now field with hope for the future. Even if you are not MSI high I would encourage you to look at trial options. There might be something that could work for you. Especially as it seems your cancer is fairly active.

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

Mercy110
Posts: 73
Joined: Wed Aug 16, 2017 12:13 am

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby Mercy110 » Mon Dec 04, 2017 4:32 am

I am sorry to hear your news. My mum has nodules in her lungs and doc said inoperable. I do remember how disappointed we are and we did search for second opinions which told us similar results.
Now she is in Folfox with Avastin. Luckily she is doing fine temporarily. Although her lung nodules did not gone for the last CT scan, I still searching for surgery options. It is not easy but I do see hope from cases in the forum. I know lung nodules are properly very difficult to operate but there are patients who can stay with cancer for long years. Just dont lose hope yet. Take the advice and always stay positive, then search for further options. May be it can be cure or operable after few years.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery done. Temporary stoma. Path: T4N1M0. Stage3C. Chemo - Xeloda. Rejected radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4.
Start from 2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3)
2017-11: Stable Multiple Lung Nodules from CT

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

fumaros
Posts: 218
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Feeling hopeless. Para aortic nodes-inoperable?

Postby fumaros » Mon Dec 04, 2017 12:49 pm

I know I don't have the answers you need. But never give up fighting and looking for them. There are experimental treatments occurring around the world, keeping searching and don't give up hope.
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
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
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED


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



Who is online

Users browsing this forum: Aqx99, Yahoo [Bot] and 32 guests