Cancer - How It All Came About - part 2

Needless to say I had a very sleepless night post diagnosis.

I didn't know that when I walked into the doctor's office I was enjoying the last few moments of freedom as a normal health(ish) woman. Walking out I knew I had this alien invader that was taking over my body.

Sounds a lot like a case of the Body Snatchers really.

A lot of cancer survivors seem to share the same experiences after their diagnosis.
Worry, Anxiety, Panic attacks, Anger, Frustration, Grief, Fatalism.

There were a lot of crying, a lot of questions of "Why me?!" then "How did this happen?!", a lot of self and genetic blaming.

That first week I had what I can only describe as panic attacks - Rapid breathing, sweating, stomach churning - total fight or flight response. I just wanted to run run RUN away from the cancer. (Illogical, captain!)

If my husband wasn't there to hold me, comfort me, work through my anxiety I don't know what I would have done. (Thank you honey.)

So. After a lot of personal introspection we still needed to take care of business.

Business Item #1 - Appointments.

Ohhhhh the appointments. I was referred (wahey!) for a second opinion at Sunnybrook hospital (A top research hospital in Toronto.)
"I know you already did a CT scan but they will like to do their own scan at their hospital" confided the general surgeon.

Apparently there is a bit of a hospital bias towards their own hospitals. Doctors want scans done at their hospital with staff that they know and trust. The CT scan done at my local hospital apparently "wasn't that great" according to my oncologist so she ordered another CT scan. Sure doctor, I'd love to take another radioactive oral / IV dose for you!!!
I guess I rather they had a clear picture than one they had to guesstamate. "Um,...that looks like a liver...or spleen?"

To give you and idea of the appointments I have had so far:
September     -Annual Physical
October 3      - First Colonoscopy
October 21    - CT scan (They found an ovarian cyst!)
November 1  - Second Colonoscopy
November 5  - Ovarian ultrasound (Cyst is 1.7cm and not 3cm as noted in CT scan)
November 12 - Office appointment about ovarian cyst
November 14 - Office appointment - Diagnosis
November 28 - MRI and blood work
November 29 - Sigmoidoscopy - I wasn't asleep! There's a camera up my butt!!!
December 3   - Clinic appointment with oncologist - she wants another CT scan and ultrasound!
December 13 - Pelvic ultrasound
December 17 - CT scan
January 7       - Clinic apt with onco - Found something on my adrenal glands - wants another scan! (sob)
January 14     - Ostomy nurse
January 28     - CT scan (no IV dose! woohoo!)
February 18   - Clinic apt with onco - Adrenal gland is good.
Marchish       - Surgery

So far that's 17 appointments in total - not including the appointments for Naturopathic doctors, acupuncturists and massage therapy.... Thank goodness I'm not working because I don't know how I would have managed all the appointments and still kept a job....

Business Item #2 - Research

Internet time! Perhaps it is just me but I don't like being kept in the dark about things. I rather know all about cancer, rectal cancer, prevention, treatments, statistics, survival rates, operations etc etc. I want to go to my appointments armed with educated questions and not be coddled into believing everything my doctor tells me.

The general surgeon said I looked like I was Stage 1. My polyp looked moderately to highly differentiated. The cancer looks to have only gone through to the submucosal layer. WHAT DOES THIS ALL MEAN DAMMIT?!?

Some of the medical jargon was familiar because I had been studying for a medical office administrator certificate. Some I had to look up.

Moderately to Well differentiated polyp:
Differentiation is the grade of the cancer and it is based on how abnormal the cancer cells look under the microscope. Cancers that are poorly differentiated tend to be more aggressive – to grow and spread more quickly. [cancer.org]

Polyp to Submucosal Layer:
In stage I, cancer has formed in the mucosa (innermost layer) of the rectum wall and has spread to the submucosa (layer of tissue under the mucosa). Cancer may have spread to the muscle layer of the rectum wall. [cancer.gov]

I checked the statistics for cancer recurrence and cancer survival rates for Stage 1. It seems 80-90% over a 5 year period. Recurrence if it happens will happen in the first 3 years. Recurrence depends on the treatment and stage you are at.
For me chance of recurrence is 9-20% for a local excision (The site of the cancer is cut out along with a border of healthy tissue.) For a APR (Abdominoperineal resection) where they remove rectum and part of the sigmoid colon and they place a permanent colostomy the chance of recurrence is 1%.

Interesting fact: I found out that no MRI, CT scan or ultrasound can tell you that your lymph nodes are 100% clear. The scans are only 85% accurate. So really if you have a early stage cancer it's all a guessing game.

Frustration much?

I need as much information as possible in order to make an informed decision as possible. If I don't have 100% facts then I have to guess. But this is my LIFE and my decision impacts my children and my family - I really shouldn't have to guess about something so important!!!!!