Postby Kathryn in MN » Fri Sep 14, 2012 11:11 pm
Sigmoid colon and multiple lymph nodes in multiple areas for me, but none in the neck so far. Pretty much neck down, but above pelvic area is where everything is for me, including chest and abdomen, shoulder, clavicle, and spine. It is not common to go to nodes without also going to liver and/or lungs. But I have had no organ involvement at all. I now have bone mets too - and still no organ involvement. This is even way more unusual. But as we live longer due to the treatment options out there, more odd situations are presenting.
With the location of some of my nodes (periaortic) I was supposed to only live 22 months. I'm at 37 months now and don't plan on leaving any time soon.
I know of ONE person who had just ONE distant lymph node recurrence after an original stage IIIC dx, who was able to have it resected (easy location), and did adjuvent chemo again (just like after his colon resection) and has been clear almost 3 years now since that second treatment.
I know several others like myself that just play the "whack-a-mole" game, knocking back down lymph tumors as they pop up. Most have also had/have organ involvement at some point, if not right now. The chance for cure after distant lymph involvement isn't great. But we seem to do quite well sticking around a long time. Besides people that will post on this board, I have two friends that have been using different procedures for lymph mets, plus maintenance chemo and are 7 and 8 years out from dx now, still going strong.
Options for lymph node mets are chemo, radiation (several types) cryoablation, resection and more. It all depends on how many there are, and any other spread, and the location of the nodes. My periaortic were behind my heart on my spine and no one would touch them - not a surgeon or radiologist. Chemo ended up taking those out. But I had 4 others (abdominal and against esophagus) radiated with good results.
I wonder about your statement that they aren't ready for the forum because they are too new? Unless there are underlying circumstances, this is a VERY good place for someone new to ask questions and get information. It was a life-saver for me right after dx. I think a lot of us here would say the same.