The Colon Club

Thank you Beth—yes, I am in the process of finding a surgeon who will remove the distant node at the time of surgery (since my mom has RC, surgery is the last step for us instead of the first.)

From what I understand and at the time, i went to Cleveland Clinic they never said I was stage four. This is what my MRI results showed:

LYMPH NODES
Mesorectal lymph nodes and tumor deposits:
* Suspicious mesorectal lymph nodes/tumor deposits: N+: Short axis 5-9
mm and round shape / irregular contour / heterogeneous signal intensity
* Location of most suspicious node: 3:00, immediately below the level of
the tumor;

Extra-mesorectal lymph nodes:
* Suspicious extra-mesorectal lymph nodes: Yes , left internal iliac
node measuring 1.2 cm in short axis with increased peripheral
irregularity (7:16). Additional ill-defined left internal iliac lymph
node located immediately superior to this (7:20).
* IMA node station: No suspicious adenopathy.

THIS IS AFTER 3 MONTHS OF FOLFOX (CHEMO)
LYMPH NODES
Mesorectal lymph nodes and tumor deposits:
* Suspicious mesorectal lymph nodes/tumor deposits: N0
* Regression of mesorectal adenopathy.

Extra-mesorectal lymph nodes:
* Suspicious extra-mesorectal lymph nodes: No
* Fibrosis of previously identified left internal iliac lymph notes.
* IMA node station: No suspicious lymph nodes.

At each of these points I was classified Stage 3. Once it went to my liver is when I was classified Stage 4. Nodes are a way of transferring cancer to other organs and also the bloodstream so I am not sure if it is stage 4 just because some nodes lit up.

I hope this helps. Let me know if you have any other questions.

Just saw your post...
My oncologist preferred not to commit to stage 3 or 4 (I had several enlarged iliac nodes), and instead preferred to stage me as T3N2MX (I also had some presacral changes that were not biopsied)

As you know, i underwent 8 cycles of FOLFOX followed by 28 days of chemoradiation plus targeted radiation to extraregional nodes. I had a complete clinical response and was given the option of watch and wait (but this was not a good fit for my personality, so I elected to proceed with surgery)

I did end opting for an APR, which was done robotically, and convinced my surgeon that it was worth pursuing robotic iliac node dissection as well. Post up plan was to continue with maintenance xeloda plus Celebrex (basically the ADAPT protocol) but I had persistently low platelets, and since I had a complete pathological response (and a strong family history of myelodysplastic syndrome) we decided to drop the xeloda and continue with Celebrex alone. That was 3 years ago, and scans and CEA have been stable.

My life has been complicated by other complications of chemo, radiation, and my underlying autoimmune disease, but I would choose the same treatment course again with no hesitation. Neuropathy and dysautonomia are no fun, but it could be a lot worse. Please let me know if you have any other questions about my treatment...I am not on this forum much, but I do check in from time to time

Thank you again hawkowl. I have shared your story with my mom.