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.