I Hate Rectums: a Rectal Cancer Synopsis
(This website is not yet complete, but it is a good start.)
I Hate Rectums is just one story for moderately advanced rectal cancer.
Assuming you have rectal cancer, your story may be different, so please take all of this with a grain of salt.
Why do I hate rectums? Because they get cancer. FYI: your lifetime chance of getting colon or rectal cancer (the rectum is simply the end portion
of the colon, or large intestine) is one in 20. Hence, it is wise to get a colonoscopy every few years to check for and hopefully remove any
budding cancer. Many insurance companies don't cover colonoscopies until you are over age 50. However, I was only 46 at diagnosis, and while I was undergoing
treatement I met several colon cancer patients in their 30's and 20's. So there you go.
My Symptoms
My symptoms included diarrhea with some blood. These symptoms often accompany various irritable bowel syndromes and hemorrhoids.
So for around nine months I assumed there was no cancer, and adjusted my diet, hoping to cure the irritable bowel portion.
Eventually the diarrhea became difficult to control, so off to the doctor I went. Upon a quick examination, he did not suspect cancer.
He thought it was "probably irritable bowel syndrome and hemorroids." Then he sent me off to a specialist for a
colonoscopy and a more conclusive diagnosis.
Colonoscopy
The colonoscopy is relatively painless because you're sort of unconscious during the procedure.
There is a risk of perforating your colon, with a probability around 1/500. A colonoscopy consists of a tiny camera on a flexible hose that
is poked up your butt along with some simple tools for biopsies (tissue samples of suspicious growths) and removal of small growths. The flexible
hose allows the doctor to examine your entire large intestine, which is roughly 6 feet long and has a very well defined shape.
CT scan:
The colonoscopy guy sent me out for a CT scan to look at "a large polyp". It turns out the CT scan covered all of my torso
because he was already virtually certain of cancer, and he wanted to check for visible metastises, particularly on my liver.
Diagnosis:
"I'm afraid you have a relatively large tumor in your rectum and it is cancerous. Because it is very low-lying and near your anus,
you will probably have a permanent colostomy." This means I would have my rectum chopped out, my butthole sewed shut
permanently, and the end of my colon poking through the side of my stomach and into a bag. Bad picture? Yes.
Staging:
Staging is where they attempt to define how advanced your cancer is. The more advanced, the more likely it has spread to other organs, and
the lower your chance of survivial. Staging is very important because it defines the preferred treatment path. Interestingly, the size of the
cancer isn't particularly relevant. More important is whether it has penetrated all the way through the rectum wall. If it has
penetrated most of the way through, it is referred to as stage T2. If it has penetrated all the way through, but hasn't spread much beyond,
then it's a T3. The lower the T-number, the better your chances. Mine was staged as "Definitely a T2 and
probably a T3." Note: anything above a T3 and your long-term odds are bad. Because it was "probably" T3, the staging was defined as T3, and this
defined the treatment pathway. When it's a T3, the tumor may have metastisized locally to lymph nodes, etc. The more metastases, the worse
your odds. The hope for the T3 is that upon surgery and excision of lymph nodes, etc. no metastases will be found.
With a T3, you get chemo, radiation, and surgery. That's what I got.
For rectal cancer, staging is accomplished with a rectal ultrasound. Basically, they poke a probe up your butt (note: the probe is not small),
sort of wave it around, and create a picture on a computer screen. The picture is not crystal clear, which is why there can be uncertainty in the
diagnosis.
Surgeon #1:
I was referenced to a general surgeon for an exam for surgery options. He performed a digital exam (poked his finger up my butt).
His conclusion: "The cancer is low-lying only because it hangs down. The actual attachment point is farther up, so I think we can save
your sphincter muscles and you won't have a permanent colostomy." Whew... we thank the Holy creator space aliens, or Oz, or whichever. "However,
you will have a temporary ileostomy post-surgery to allow for healing. Surgery will consist of removing your rectum and attaching the end
of your remaining large intestine to your anus." Bad picture? Yes, but not as bad as it was.
IV Port:
In preparation for chemo, I had an IV port implanted below my left clavicle. It is round, about one inch in diameter, and just under the skin.
A tube connects it to a large
vein under the clavicle. The port is needed because the chemo will destroy small veins if a standard IV is used. This will make a big mess.
Instead, the nurse simply stabs a needle into the port and tapes it in place. No searching for veins required. Of the many times I was stabbed,
nobody ever missed the port. I believe the port was installed on an outpatient basis, and the experience
wasn't at all distressing to my body. I sort of had wandering shoulder pains afterwards, but these vanished in a month.
Initial Chemo and Radiation:
Chemo and radiation started together about 3 weeks after diagnosis. The chemo consisted of the drug 5FU infused using a pump that I carried
24/7 for 6 weeks. The whole kit fits in a fanny pack, from which a tube runs to your IV port. It's a relatively solid arrangement: I was able to
split firewood by tossing the fanny pack into a regular backpack. It's sort of weird having a tube stabbed into your chest for 6 week straight,
but so it goes. You'll probably take fewer showers because they become problematic.
The chemo will lower your energy levels, but not too much. (Based on my experience.)
The radiation treatment began after some xrays etc. to determine exactly where the cancer was. The radiation was delivered using 3 beams
from 3 different directions. The beams intersected at the cancer. This way the cancer gets maximum dose, and the surrounding tissue gets
less (roughly one third). For you radiation buffs, the dose was MUCH higher than I expected. It was a local 160 rads 5 days a week for 6 weeks. To
give you an idea what this means, if you receive 500 rads over your whole body, you have a 50% chance of being dead in 30 days. Fortunately
the dose was local rather than whole-body, so it was not lethal. However, it probably drained my energy. It also has the well-known potential to
cause (other) cancers long-term; so basically it's a trade off of short-term benefits for risk long-term negatives. It can also have immediate
side-effects such as disrupting other nearby organs, sexual side effects, sterilization, and burned skin.
The radiation requires that you be positioned precisely on a table for each treatment. This is facilitated by a special table that you lay on,
two laser beams
crossing the room, and 3 tiny tattoos that you will receive (one on each hip and one on your back).
As the radiation and chemo proceeded, my symptoms actually improved, and after a few weeks my diarrhea was minimal and easily controlled. It
was clear that the chemo and radiation were shrinking the cancer. Shrinkage is desired for two reasons: (1) small cancer means a smaller
cancer, which sounds good, and (2) smaller cancer means surgery to remove it will be easier. As it turns out, the rectum is tightly packed
in with other organs surrounded by pelvic bones. So shrinking the cancer means the surgeon will have more room to maneuver.
Overall, my perception of the pre-surgery chemo and radiation is that it was very easily tolerated, and though it may have decreased my
energy levels slightly, it was an overall positive on my quality of life.
Surgery Research:
While the chemo and radiation were happening, I obviously had time to do some research. Both the chemo and radiation are relatively
"plug and chug" procedures: it's the same everywhere, and all practitioners do approximately the same thing. This isn't true if your case is extremely
severe, in which case experimental (and potentially dangerous) drugs may be tried. But in my case, chemo and radiation were simply
formulaistic and well-understood.
However, surgery is different at different hospitals. Some hospitals have general surgeons. Larger facilities have specialists. And the
best facilities have specialists with specialist equipment. Regarding the latter, I quickly identified the
Mobetron as specialist equipment
for rectal cancer surgery. It is a portable linear accelerator used DURING surgery to give a very direct radiation dose to "trouble spots"
that cannot be surgically removed. These may be metastases to various important organs that are preferrably left intact. The Mobetron is
used during other types of cancer surgeries as well, but it is clearly valuable for certain rectal cancer sugeries.
For example, if your chance of
"complete" cure is a relatively low 25%, use of the Mobetron can increase this number to something around 45%. And that's a big difference.
So I contacted the Mobetron manufacturer, and learned there are only nine in the US, the closest to me being the Mayo in Phoenix.
Other facilities have equipment similar to the Mobetron, but this equipment is fixed in place, so YOU must be transported to the equipment
during surgery, which is a bad thing. It's difficult to maintain a sterile environment while rolling you around the hospital.
A little more research revealed that Phoenix Mayo has colorectal specialists. So, taking charge of matters, I made an appointment for an
evaluation at the Mayo. This led me to a Dr. Heppell, a colorectal specialist. Upon examinaion,
his opinion was the same as Surgeon #1's, but with one BIG
difference. With Surgeon #1 I
would receive a "straight connection" of my colon to my butthole. But Dr. Heppell suggested a different procedure: turn the colon back on itself
to make a "J-pouch." At the bottom of the J, cut a hole and connect this to my butthole. Effectively, this would give me a new rectum.
Later research revealed that ALL people with a straight-connect have incontinence problems, often for more than a year. However, with a J-Pouch,
some people reported no incontinence problems at all. This is a huge difference.
Anyway, I made a surgical appointment on the spot. The Phoenix Mayo was the place for me. Based on my subsequent experience I
recommend it and Dr. Heppell strongly. (Note: nobody is paying me to say this.)
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If you have rectal cancer, LOTs of stuff will get poked up your butt. Get used to it.
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Terminology
Colonoscopy: this is where a doctor shoves a little tiny camera up your butt. He looks at a computer monitor to see what the camera
sees. Along with the camera are little wire hoops and other tiny tools for exising the bad things. This equipment is on the end of a flexible tube,
and the doctor can make the tube turn in any direction to folow your colon. The colonoscopy ends at the end of your large intestine. Your
small intestine is not included in the exam.
Large Intestine (Colon): normally, the large intestine (and rectum) is about 6 feet long and has 4 primary functions. (1) Absorb water,
(2) resorb
salts injected into the small intestine to assist with digestion, (3) create nicely formed turds, and (4) provide storage capacity so you can have
relatively infrequent bowel movements rather than 30 per day. Importantly, the rectum, which is at the end of your large intestine, is
primarily a pouch that stores turds until you poop.
Small Intestine: the small intestine is about 20 feet long and resides between your stomach and large intestine. It's primary responsibility
is digestion and nutrient absorption.
Sphincter Muscles: the sphincter muscles consist of TWO circular muscles at the rectum's exit that are typically closed to retain turds.
When you take a crap, you relax these muscles, they open and out come the turds.
Anus: where turds come out.
Hemorrhoids: exposed and droopy veins near your anus. They tend to bleed and can be painful. However, they are primarily an
irritation rather than a life-threatening condition.
Ileostomy:
This is where the end of your SMALL intestine is poked through your abdominal wall and into a bag. This happens following rectal surgery
to allow for healing.
Colostomy:
This is where the end of you LARGE intestine is poked through your abdominal wall and into a bag.
Note: this story lacks references because it would take a long time to find them again on the web. If you want to find the references, you
certainly can.
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