Life is consumed by cancer around here lately – and here’s something interesting I’ve learned: it’s been tremendously helpful to read about various experiences and gain information from others (on sites that aren’t written by crazy people).

So.

I’ll eventually get back to whining about how much weight I need to lose (since I’m only half crazy).
________________________________________

As I mentioned earlier, the pathology report came back with great news: stage I. No lymph node involvement + no growth through the wall of the colon.

I previously had zero clue how cancer staging actually works – and still have just a rudimentary understanding – but cancer.net has been very helpful.

According to the info found there (which appears valid and was recommended by a health professional), a TNM system is often used in staging.

This system uses three criteria to judge the stage of the cancer: the tumor itself, the lymph nodes around the tumor, and if the tumor has spread to other parts of the body. The results are combined to determine the stage of cancer for each person. There are five stages: stage 0 (zero) and stages I through IV (one through four). The stage provides a common way of describing the cancer, so doctors can work together to plan the best treatments.

TNM is an abbreviation for tumor (T), node (N), and metastasis (M). Doctors look at these three factors to determine the stage of cancer:

* How deeply has the primary (first) tumor penetrated the bowel lining? (Tumor, T)

* Has the tumor spread to the lymph nodes? (Node, N)

* Has the cancer metastasized to other parts of the body? (Metastasis, M)

Jon’s actual info is this: pT2 pN0 pMX

According to cancer.net, this is what’s going on:

T2: The tumor has invaded the muscularis propria (a deeper, thick layer of muscle that contracts to force the contents of the intestines along).

N0: There is no spread to regional lymph nodes.

MX: Distant metastasis cannot be evaluated.

Jon’s combination = Stage I.

The cancer has grown through the mucosa and has invaded the muscular layer of the colon or rectum. It has not spread into nearby tissue or lymph nodes.

(Borrowed)

________________________________________

He had a 13cm (5.12 inch) segment of his distal (specifically – sigmoid) colon and rectum removed.

(Borrowed)

Right where I previously mentioned.

In fact, based on how low the tumor was, his technical diagnosis is rectal cancer – but it’s all essentially the same (same organ, just different sections) and is AKA colorectal cancer. According to cancer.gov,

The first 6 feet of the large intestine are called the large bowel or colon. The last 6 inches are the rectum and the anal canal. The anal canal ends at the anus (the opening of the large intestine to the outside of the body).

(Borrowed)

________________________________________

Cancer.gov lists the following symptoms associated with colorectal cancer:

* A change in bowel habits.
* Blood (either bright red or very dark) in the stool.
* Diarrhea, constipation, or feeling that the bowel does not empty completely.
* Stools that are narrower than usual.
* Frequent gas pains, bloating, fullness, or cramps.
* Weight loss for no known reason.
* Feeling very tired.
* Vomiting.

Jon had many of these – all of which are admittedly common and could have likely meant anything (maybe even celiac, though I still think that was a total BS/cop-out dx) – but I feel very strongly that he was dismissed because of his age – a notion that was confirmed by his surgeon.

It’s NOT (statistically) common for someone so young to develop colon cancer. But he did. And he complained about many of these symptoms to various doctors for A YEAR AND A HALF.

Nobody took him seriously until I encouraged him to keep a log of his symptoms to give to the Knoxville gastroenterologist.

(Something I asked him to do because I wondered if charting would shed some light on whether his symptoms did, in fact, exist and/or worsen only during times of increased stress – the cause of his symptoms according to a couple of the previous doctors.)

Honestly, I had no idea just how badly he felt until I read the log – but I actually told him not to bother sharing the log because I doubted the doctor would care (even though, yes, it WAS my idea). I was legitimately SURPRISED that the doctor asked for it when Jon mentioned that his soc worker wife was having him chart his symptoms. I am just THAT cynical and jaded – or that easily swayed toward denial.

The log got him a colonoscopy, though.

I’m a trained advocate – and I just dropped the ball.

So – lesson here: DO NOT AVOID CONFRONTATION. Speak up. Loudly and thoroughly. Demand more time, attention and better care.

According to cancer.net:

Colorectal cancer is the third most common cancer among both men and women in the United States. It is also the third most common cause of cancer death among men and women separately (and the second most common cause of cancer death total in men and women combined) in the United States.

BUT:

When colorectal cancer is detected early, it can often be cured. The death rate from this type of cancer has been declining for most of the past 20 years, possibly because more cases are now detected early and treatments have improved.

________________________________________

I haven’t had time to think much about the disparities in care/testing – but it’s coming.

I know that Jon very easily received care/testing that he absolutely would NOT have received if we were uninsured and/or incapable of financially managing this situation (i.e., the PET scan & visits with doctors who have signs indicating they do not accept state Medicaid managed care, etc.).

We are so fortunate. But we shouldn’t have to be.
________________________________________

Jon is doing extremely well. He has chosen to stop the pain meds and is now relying solely on ibuprofen because he’s tired of being in a fog.

He has also decided to ditch the white carbs and is wanting real food again.

His big meals yesterday were cheese grits …

DSCN8449

… and buttered noodles.

DSCN8474

He can have peeled/cooked vegetables and some meat now – so we’re done with this stuff.

He’s still extremely tired – a short trip to Target yesterday completely wiped him out – but he’s progressing as expected.

We’ll know more about further treatment next week. Radiation is likely given the location of the tumor, but we have been told that chemo is generally NOT indicated for stage I – so we’ll see.
________________________________________

We feel so lucky – and so aware that this could have been much worse.

Advertisements