Colon Cancer Diagnosis Details

While most of my posts here and on my real-time blog, We Are All Made of Stars, deal with the more emotional aspects of my treatment, one of the incredible resources I met on the Colon Club (my primary cancer support network during treatment) pointed out how important it is to share my specific diagnosis. Doing so allows other CRC patients to understand which of my treatment details would be relevant to them. He took the time to look at my history of posts to summarize the detail that other patients might need; and I’m including his overview here, inclusive of why some of these details matter.

The Details of my Stage 4 Colon Cancer diagnosis:

Sigmoid colon cancer, metastatic to the liver, MSS, kras/nras/braf wild type, HER2 negative

cT3N1M1 (at diagnosis)

ypT3N1aM1a (at first surgery)

There are a dozen or more data items that help an oncologist define a patient's specific treatment trajectory. Outlined here in greater detail is the specific CRC context of my treatment. 

Context of diagnosis:

Colonoscopy vs. emergency surgery: For patients diagnosed with CRC, it is important to note whether the diagnosis came about through a normal screening colonoscopy, or whether it was the result of an emergency surgery to remove a blockage. In the latter case, the patient will have a reduced set of treatment options, and the timeframe for detailed treatment planning will have been compressed because of the emergency surgery. Patients who need emergency surgery may encounter a more difficult situation than patients who have had time for adequate consultations and have had sufficient time to request second opinions about how to proceed.

My cancer was discovered via colonoscopy; I was able to have three consults (University of Chicago, Northwestern, and Cleveland Clinic) before beginning chemo two weeks later. Each of them recommended starting with the same course of treatment.

Location of the cancer:

Whether the cancer originated in the colon or rectum can make a difference for various reasons, because there are separate NCCN treatment guidelines for colon cancer (CC) and rectal cancer (RC), although there is some overlap, for example in drugs used in a chemo protocol.

My cancer originated in the sigmoid colon.

Type of cancer:

Your diagnosis should also specify the type of cancer you have (e.g., adenocarcinoma, etc.), as well as its grade, so that the viewer can assess whether you have an ordinary type of colon cancer as opposed to a particularly aggressive type.

I had adenocarcinoma - and I still need to check with my oncologist about its grade.

KRAS/NRAS/BRAF mutation status:

This information is important because it impacts what treatment options are available. In particular, I spend a lot of time on this blog discussing Vectibix, which like Erbitux, is a targeted therapy that is used only for a KRAS 'wild-type' diagnosis.

My cancer was KRAS “wild-type.”

MSI status: 

This is important to understand, because the list of potential MSS treatments may involve a different set of therapies from those available for MSI-H patients.

My cancer was MSS.

Baseline CEA:

CEA tested at the time of diagnosis could be very important to know, especially if it is very high. Baseline CEA is very important to measure before any kind of treatment intervention is attempted, because it might turn out to be a good marker for future recurrences.

My baseline CEA was 931; and over time it has proven to be a very sensitive marker for recurrence, almost always rising just a little before a scan picks up new growth. When I am healthy, my CEA tends to hover below 1.0, although anything under 3.0 is considered "normal."

TNM staging code:

These codes give details about how extensively the cancer has spread. 

I was Stage 4A – which means the metastases had reached the liver, but no other organ.

I was T3 – which means the primary tumor had reached the outer limits of my colon.

I was N1 – which means only one to three regional lymph nodes were impacted (if memory serves, they only found one)

And I was M1 – which means that only one other organ beyond the colon was impacted – my liver

Location, size and distribution of metastases:

At the time of initial diagnosis, it is important for Stage IV patients to be informed of the estimated extent of metastatic involvement, including how many different organ sites have mets, and for a given organ, how many mets are present, how large they are, and whether they are located in places considered "difficult" or inoperable. This can make a big difference for strategies for eventual removal of these mets -- if such removal is even possible.

My cancer had only spread to the liver – but it had really spread. At the time of diagnosis, tumor covered about 80% of my tumor, and I was so far away from operable that none of the three oncologists with whom I met were willing to discuss it with me.

Comorbidities and general health of the patient:

At the outset of treatment planning, it is important for the medical staff to obtain an assessment of the general health of the patient, including a list of important comorbidities and conditions currently under treatment that could possibly influence which CRC treatment interventions might be implemented. This would also include autoimmune diseases, too.

I did not have any other health problems that would have precluded certain CRC treatment interventions.

Family history of CRC or polyps:

It is important to know if you have any family history of colon cancer. Also, important to note is whether you belong to an ethnic group that is known to have an elevated risk of colon cancer.

I didn’t think that my family had any history of polyps – but after diagnosis, both my parents referenced polyps that had been discovered in their own exams. I am Caucasian – of Italian, Polish and Austrian descent, with no elevated risk factors – and in fact, no real risk factors for colon cancer overall.

If you’d like an overview of my treatment journey, you can find it on my blog, We Are All Made of Stars, here.