1st time poster- para-aortic lymph node mets

Please feel free to read, share your thoughts, your stories and connect with others!
chrisnellany
Posts: 6
Joined: Sun Aug 25, 2013 10:05 pm

1st time poster- para-aortic lymph node mets

Postby chrisnellany » Sun Aug 25, 2013 11:28 pm

Hi, at 50 years old, I was diagnosed with stage 4 bowel cancer in November 2011 with liver metastases. I had a right hemicolectomy and liver resection on the 13/12/11 then started my first cemo session 23/1/12, Folfox/Avastin. On the 7th session I had an allergic reaction so cemo was changed to Folfiri. More spots were seen in the liver in April 2012. This was also the reason why the cemo drug was changed as the folfox was obviously not working. RFA was performed on the new lesions on the 28th May 2012. After just 4 sessions of Folfox, I was taken off the cemo as it was making me very sick and scans in July were clear. Unfortunately scans in October 2012 showed new lesions in the liver so in November 2012 I had my second liver resection. I was not restarted on cemo and I have enjoyed a good 7months. I got married in Jan 2013 (second time), moved house and enjoyed 4 good holidays. Unfortunately my latest scans in July 2013 showed the tumour has returned to my liver (intense activity in segment 8) and there is metabolically active lesions seen in the para-aortic lymph nodes. My oncologist says these are in-operable and my only option is to go back on the Folfiri to try and shrink the tumours. They say there is also no point doing surgery to the liver either because its not worth putting me through surgery if the lymph nodes cannot be removed (I think they are too near the aorta). I am finding this hard to accept and feel my doctors are giving up on me. Does anybody out there know anyone who has had this surgery and or know a surgeon who is capable of doing such surgery. I am restarting cemo on 3/9/13 (Folfiri/avastin).

Many Thanks
Christine

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

Re: 1st time poster- para-aortic lymph node mets

Postby Asterix » Mon Aug 26, 2013 3:12 am

I have had a para-aortic lymph node resected, as well as 3 retroperotineal nodes during the same op. I have not had liver involvement. The nodes were seem on PET scan at diagnosis, and I was told they were inoperable. After 3 months of FOLFOX and Avastin they didn't show on the scans. A year later my CEA starting rising and they showed on PET again. Then they were removed. Unfortunately my CEA is still elevated after the surgery and we don't know why. I have another PET scan in 2 days to try and find out.

The aorta is quite long, so para-aortic nodes could be in many areas, so yours may not be the same as mine.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

chrisnellany
Posts: 6
Joined: Sun Aug 25, 2013 10:05 pm

Re: 1st time poster- para-aortic lymph node mets

Postby chrisnellany » Mon Aug 26, 2013 6:44 am

Thanks for your reply and advice. Would it be too imposing to ask the name of your surgeon who removed your lymph nodes. I am in Perth Australia. Good luck with your next scan.
Christine

User avatar
Traveler001
Posts: 471
Joined: Fri Jul 27, 2007 11:47 pm
Location: Chicago
Contact:

Re: 1st time poster- para-aortic lymph node mets

Postby Traveler001 » Mon Aug 26, 2013 8:13 am

I had a lymph node that was stuck to my aorta that was successfully removed (along with a number of other mets) using robotically assisted thoracic surgery at MD Anderson. PM me if you want.

Traveler001
Diagnosed June '07
Laparoscopic LAR surgery - 7/12/07
Stage IIIC 4/21 nodes
FOLFOX6 and Erbitux started 8/24/07
Completed 11 / 12 on 1/15/08
NED
New 4.5 cm lung mass and lymph nodes discovered 7/12
Folfiri w/ Avastin on 9/14/12 - 11/29/12

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

Re: 1st time poster- para-aortic lymph node mets

Postby Asterix » Mon Aug 26, 2013 4:17 pm

Christine,
It was Dr Ian Martin. He works from the Wesley in Brisbane. http://www.martinsurgery.com.au/ian_martin.html
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

User avatar
Kathryn in MN
Posts: 2970
Joined: Mon Sep 14, 2009 12:25 am
Facebook Username: Kathryn Finn-Blume
Location: Minnesota & Mexico
Contact:

Re: 1st time poster- para-aortic lymph node mets

Postby Kathryn in MN » Tue Aug 27, 2013 3:41 am

You can pursue a second opinion, but it is also quite possible that you really are not a candidate for surgery. I know it is not what anyone wants to hear, but for some of us that is the case. I started off with para aortic node mets and was told chemo only. A second opinion from a major NCI (DUKE) Tumor Board agreed - chemo for life. I did 14 more months of chemo (after already doing 7 earlier) and then just couldn't tolerate it anymore. At that point I had radiation daily for 2 months to 4 stubborn nodes. I had more nodes than that with cancer over that time - chemo killed some off, but not all. Radiation took out the stubborn ones. The idea was to lower my tumor load, giving me a much better chance at living longer, and a chance for a much needed chemo break which I took. Then I had progression to more nodes and bones. I did radiation, more chemo and RFA. (Radiation and RFA were to bones, not nodes this time.) I got another break. Now more progression and back on chemo.

All of my treatment is palliative, not curative. The truth is that once the cancer is throughout the lymph system as mine is, the chance of cure is almost non-existent. This is true even if you do get nodes surgically removed - although your best chance is if you get them out. The problem is there are usually lots of little cancer cells spread throughout the lymph system - many too small to detect and remove when they take the big ones they know about. I don't say this to be a downer, but to be honest. Still I always say to HOPE for the best, and PLAN for the worst, and make every day count! No one really knows how long they have, cancer or not. The projection for me was 12-22 months. I was misdiagnosed for 2 years, and I've gone 4 years since dx now! Six years, not less than two! And my "chemo for life" hasn't been constant - I have had 3 treatment breaks. Many of us can live managing a chronic disease for a long time. Chemo can kill off enough of the cancer to get you to the point of breaks or other procedures. And if we hold on long enough, newer better treatments may come along too. Two new drugs are out there since my dx, and I've been using one of them since last fall with good success (Zaltrap).

I do know one person who had great success with surgical removal of a lymph node tumor. He was originally a stage III. One year after he finished treatment he had just one solitary node light up. The biopsy confirmed CRC. He had it surgically removed and then did 12 tx of FOLFIRI + Avastin. He has been cancer free for 4 years now! So it can happen. But it is just not common, especially with multiple nodes or multiple sites involved like liver and nodes, bones and nodes, lungs and nodes, etc.

I also know two women that live near me who keep having node mets pop up and have had SBRT (targeted radiation with just 5 or 10 tx needed) or cryoablation (a freezing procedure) to the mets each time they pop up, and they stay on Xeloda for chemo maintenance. They both have had liver or lung involvement at some point too. One has had multiple RFA procedures to remove lung nodes as they pop up, and the other had a liver resection which has stayed clear for several years now. The three of us have been plugging away and adjusting to each new situation as it comes for many years. I am the "newbie" at 4 years in - they are at 6 and 7 years.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: 1st time poster- para-aortic lymph node mets

Postby NWgirl » Tue Aug 27, 2013 2:47 pm

I have nodes lighting up next to my aorta as well. I got 3 opinions - one from my local cancer center, one from Providence Cancer Center (Portland, OR) and one from Fred Hutchinson Cancer Center in Seattle. All 3 radiation doctors and oncologists I consulted with said no to radiation or surgery - too close to the aorta. I did not go to MD Anderson - I've heard they are more aggressive in their treatments.

I've been on chemo for 2 1/2 years now and I have a scan coming up later this month. For now at least, the cancer is slow growing. Best of luck with your treatment, whatever it ends up being.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

chrisnellany
Posts: 6
Joined: Sun Aug 25, 2013 10:05 pm

Re: 1st time poster- para-aortic lymph node mets

Postby chrisnellany » Wed Aug 28, 2013 10:57 pm

Hi Traveller, thank's for your advice. I note that you say you had lymph nodes removed at the MD Anderson and I just woundered which state this was in as I notice there are a lot of MD Anderson clinics in . I am in Australia so a long way to travel but worth it if I can get a result
Christine

bjl
Posts: 37
Joined: Tue Jul 30, 2013 11:36 am

Re: 1st time poster- para-aortic lymph node mets

Postby bjl » Fri Aug 30, 2013 4:45 pm

MD Anderson in Houston, Texas, USA.

http://www.mdanderson.org/


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



Who is online

Users browsing this forum: No registered users and 28 guests