As Seen By Susan

Lifelong Learning the Hard Way

"You have been through a lot." 

"I am sorry you are here." 

These were the first words spoken to me by my oncologists Tuesday at my first two appointments at the Cancer Center in Walla Walla.

The fact is, I was initially taken aback by the first statement until I realized my medical oncologist had read through all my medical records that went back over a year to when I had had a routine colonoscopy. Unbeknownst to me, the potential seriousness of the lesion that was detected and mentioned almost as an afterthought along with the words from the gastroenterologist, "See you in ten years," was lost on me. Yet, it prompted a hemorrhoidectomy a few months later in which the lesion was removed and biopsied with the diagnosis of "pre-cancerous." I recall full well the audible sigh of relief I felt in my surgeon's office knowing that all the pain I had suffered during the recovery had been well worth it to avoid a brush with cancer. And even at my 6-month post surgery check-up, I thought it was standard preventative procedure to be referred to a colorectal specialist in Spokane for an anoscopy. But when the doctor there called me ten days later with the pathology report of cancer, I was shocked. I cried. Ugly crying. How? Why? What next?

So yes, I guess I had been through a lot, even without knowing, and it felt comforting to hear my new doctor acknowledge it.

*     *     *     *     *

Then how disarming is, "I am sorry that you're here"? Talk about hitting the nail on the head. A cancer diagnosis was right at the top of my list of things I never thought I'd hear. So sitting in the small examination room waiting to meet my radiation oncologist was second on that list. But with those simple words, she also acknowledged my anxiety and affirmed my right to be fearful, or maybe even a bit terrified. 

So these are the facts I learned from the first meeting with my medical oncologist, Dr. Orville Batson:

• Based on the biopspy from the anoscopy procedure in Spokane, I have a 1.5 cm. lesion in the anal canal which is squamous cell cancer most commonly associated with HPV (human papillomavirus). Even though I am unaware of ever having HPV in my body, and having tested negative for it as a pre-anoscopy procedure, that's the likely cause. Just like chicken pox, those nasty viruses stay in your body and can cause serious illnesses later in life. So be sure to get your 11-12 year olds vaccinated!

• To determine the stage, I will need to undergo a PET scan to confirm whether there is cancer elsewhere in my body. The results of the PET will also determine the course of treatment regimes. Cancer that is localized or regional (as in it has spread to the nearby lymph glands) is treated differently than cancer that has spread and is distant. Dr. Batson thinks it is localized, but he has to make sure before designing a chemo treatment.

• Assuming the cancer is localized or is only regionally spread, the combination of chemo/radiation is the standard treatment. Known as the Nigro protocol, it consists of radiation therapy combined with 5-FU and mitomycin-C chemotherapy. 5-FU is usually administered through an IV over the course of four to five days at the beginning of treatment and repeated after four to six weeks. I will also be taking an oral/pill-form anti-cancer medication at home, five days a week, for 6-7 weeks which will run concurrent with radiation. ( I asked if 5-FU meant Five Fuck Yous to cancer. It doesn't, but he chuckled.)

• I won't even go into the possible (probable) side effects right now other than to say I most likely will NOT lose the hair on my head. So that's GOOD news!

And these are the facts I learned from the first meeting with my radiation oncologist, Dr. Kristen Riegert:

• To my question of, "Is this cancer rare?" she answered: "Radiation is the cornerstone of treatments of anal cancer, so radiation specialists see most of them. Virtually all anal cancers stem from HPV which a lot of people have had and which usually clear, but sometimes they manifest in cervical, head or neck cancers, or anal cancers." My response: Who knew? 

• The goal in treatment is to, "1. Cure the cancer, and 2. Preserve the function. That is why surgery is not the first treatment of choice. Because of its location, if the cancer is cut out via surgery, function is most likely lost." Good to know!

• "Also, surgery is a salvage which happens in a real minority of cases." Phew!

• When I asked what is the difference between a lesion and a tumor, this was her answer. "A lesion is the same as a tumor and it's the same as a cancer mass." Also good to know.

• The PET scan will give an "eyes to thighs" view to look for an errant cancer cells that are 1cm or more in size.

• The MRI gives a good tissue definition of the lymphatic system. This will give the best images for her to start making the plan where to target the radiation.

• During radiation, the highest amount is aimed at "ground zero" with it gradually lessening as it moves out from there. 

• Yes, there's a myriad of unpleasant side effects to radiation treatment, but I will hold those thoughts for now and not get the cart before the horse.

• But the best, best, best news of all was that as of right now, and unless the scans show differently, I have small, Stage 1 cancer.  And that is GOOD!

So if you are wondering how I am able to capture both doctors' words as direct quotations and remember all of these facts, it's because I have the most stupendous, speedy note-taking, clarification-asking patient advocate at my side. Kathryn Barron please take a bow. I couldn't do any of this without you. I love you!.