Stewsbetty wrote:clj12288 wrote:Jep,
I am sorry to hear about this discovery. I am hoping it's not abdominal lymph nodes. However, if they are, I want to give you some info because I have experience with it.
Mine have only been detected by PET scans - never big enough by CT criteria to be seen. So, I've had PETs every 2-3 months since July of 2015. Mine are considered retroperitoneal & para-aortic, and common illiac. If you do a search - it is somewhat rare. At least rare to have these lymph nodes and not other organs involved. We have blasted mine with 30 rounds of chemo, radiation, and surgery - and they continue to persist. Next steps are to try an EGFR inhibitor chemo. I have been fortunate to keep them relatively contained - although recently a node popped up in my supraclavicular (neck) region. But considering these first showed on a scan in July of 2015 - it's not lost on me I've been relatively lucky to only have these for the past 3 years.
I would suggest taking an aggressive treatment approach and making sure your doctor is in line with that approach. Don't let any doctor tell you that this means chemo for life...it may mean chemo for now until better options come along. Let me know if you have any questions.
Best of luck,
We share some commonalities. I am one of the weird LN met people. Mine started in retroperitoneal area, spread to thoracic and then up to my left supraclavicular node. Thought it was interesting that it went to the left and not the right in the neck.
Not similar in that chemo didn’t help me and my spread was very rapid. Thankfully immunotherapy is working really well for me now.
Sure hope that between surgeries and treatment you can diminish or keep your disease contained.
It's nice to meet you as it does seem like we are some of the "weirder" ones here. Mine is also in my left neck node (supraclavicular). I did a little research and after asked my oncologist who confirmed; the reason it goes to the left and not the right is because the thoracic duct from which the lymph drains from abdomen ends at the left supraclavicular nodes aka Vichow's node. Very odd and it feels so stange that cancer traveled that far. Right now, my chemo is helping me, but I am preparing for the day when it won't. Which immuno are you on? I just got my Foundation One results from my most recent biopsy and I have a Tumor Mutation Burden of 15 muts/MB which may make me eligible for immuno despite being MSS. I hope that the immuno continues to work well for you! It's given so much hope to so many people.