Can Someone Explain Staging & Why I Still Have No Clue?

Peter:

Welcome to this forum.  As you have already discovered, this is the place to be if one must have CRC.  The responses here are honest, bluntly so, and therapuetic.  No need to pay for counseling, just log on here and get involved.  Your fingers may become fatigued but it doesn't cost $125/hr to get some temporary reprieve from the mental and emotional confusion caused by CRC.

Your question/statement regarding staging of CRC hit home for me.  I went through that frustration. 

My protocologist couldn't/wouldn't say, but instead deferred the question to my surgeon.  My surgeon was a very poor communicator and said it depended.  He even waffled when I mentioned the incorporation of an oncologist in the event!  My oncologist spoke in riddles and said I needed another CT scan, but it was inconclusive because they could not get a device inserted into my rectum (bad sign).  My next stop was another trip to the colonoscopy table, but this time with a special camera that was invented by Superman - it could see through walls.  English was not that protocologist's primary language so between the residual effects of Michael Jackson's favorite drug and his verbal explanation, I remained clueless when I left that clinic.

With a feeling of being paranoid and even selfish, I bullied my way into the local oncology practice and was finally paired up with a rad oncologist and a medical oncologist.  The initial consult with these guys revolved around whether insurance would cover the services because so far none of my diagnoses had provided sufficient, clinical confirmation to warrant oncology.  But, I did have a clinically confirmed, cancerous tumor in my rectum that was so large that it was blocking the passage of anything in either direction.  We proceeded as if my situation would warrant oncological treatment.  I got mapped at the radiation clinic and then waited, and waited, and waited for someone to tell me that someone else had confirmed that my rectal cancer did warrant oncological treatment.

Out of the blue, I received a phone call from a clerk at some pharmacy confirming my mailing address.  He was getting ready to mail me a big box of Xeloda.  I told him to hold the phone, and then asked him who approved the prescription.  He said Medicare and Tricare.  So, that's how I found out that my rectal cancer was serious enough to warrant oncology.  I was telling myself that we seriously needed to have a "team meeting" and discuss communication practices.

Within a day I was on the table getting zapped with neutrons and eating Xeloda pills.  Once that picnic ended I underwent another CT scan.  The radiologist who reviewed it said that there was no evidence of a tumor.  Between the burning and the poisoning, and the natural process of fecal elimination, my tumor went down the drain.  I took a picture and shared it with my oncologist to be sure and he said it was common.

Now I was back in the surgeon's office because it was/is the commonly accepted medical protocol to surgically remove the offending section of the colon.  Plus, while you are down and out, that is also the time to check your margins - remove some lymph nodes for further pathological evaluation, which probably best defines one's stage of CRC.

A few weeks later I had my resection surgery.  Most painful event I have experienced, and I have had two lumbar spinal fusions.  Two issues were responsible for my discomfort.  I had a large amount of adhesions in my abdomen cavity due to a previous radical prostectomy (cancer survivor times two) and a double inguinal hernia repair.  The second issue was the hospital's aversion to include an adequate amount of opioid medication to control my pain.  That is another story unique to me and my comorbidity.  It had nothing to do with CRC.  Back to me laying in the hospital bed.  Somewhere in that time between being rolled into and transferred from one bed to another, visiting with family, mentally accepting the fact that I have an ileostomy, and sliding into a pain zone that literally kicked what was left of my ****, the surgeon came in and mumbled something to the effect that he removed 4 lymph nodes and the pathologist said they were clean.  I was supposed to understand that data, insert it into the previous data, and then compute my stage of cancer.

Two days after I got home from the hospital, I called my surgeon and asked him what my cancer stage was.  He was somewhat offended by the question and he said that he told me that when he visited my room after the surgery.  Stupid me!

My final chapter in this story iwa my adjuvant chemo therapy.  Have you ever asked a dog if it is hungry?  My oncologist said that I needed to undergo 12 sessions of FOLFOX6, again because this was/is the commonly accepted, medical protocol for treating CRC.  His argument was based upon the "it only takes one cell" theory.  I conceded but only endured three sessions before I tapped out.  My soul told me that the treatment was killing me at a faster pace than the disease.  I disengaged and told him that I would take my chances.  As we were shaking hands and saying goodbye, I asked him one last time.  What was my stage of cancer?  I was a 2.  If I had been a 2 in 1971 when my birthdate was the second one drawn in the "draft lottery" then my life probably would have been very different.  Just as Led Zep said, sometimes words have two meanings; sometimes numbers have two meanings.

Stay away from Google and the internet Peter.  This is the place to be if you have CRC.

Jim