Prior to the first day when I was diagnosed that fateful day May 16, 2012, I really hadn't had much experience with doctors, needles, drugs or my own mortality. Now, the doctors, needles and mortality are not the things that disturb me, it is the ever impending worry of wondering what will happen next and of possibly hearing bad news. Up until May of 2012, I pretty much felt like one of the healthiest people I know. Even the life insurance company had rated me "superior" and granted the lowest rates to me in the summer of 2010. Now, I don't worry or fear the stick of a needle, the concern of drinking colonscopy prep, or XRays. I worry about the waiting for results to be heard..... the waiting for the end of 5 years to come...... the waiting for any bad news.
I think this is just part of life. Waiting. Good news or bad, waiting just isn't comfortable. The strongest muscle we have is our mind and mine works overtime dreaming up what "might" be. Once you hear you have the big "c", your mind is never the same. I think about it every single day. Even though I don't look like I ever went through anything at all and even when I was going through it I didn't look like I was, it's a good thing you can't see inside my head. Inside there is what has changed the most.
Right now, I am a 10 months post treatment. I had my first colonoscopy with some biopsies one year after my first one. Colonoscopies are not really NCCN (National Comprehensive Cancer Network) recommended follow up for anal cancer I've been told. Most of the time they just do anoscopies or DRE (digital rectal exams). But my surgeon ordered one along with a PET/CT. She just wants to keep a close eye on things and if these help her do that, I'm down. There was a mix-up with the PET/CT in that my insurance wouldn't cover it, so a CT with contrast was done instead on chest, abdomen and pelvis. After some pointed questions, it seems a CT is just as good and will let the docs know what they need to know just as well as the PET/CT. I am not fond of these procedures and don't want them all the time to comfort or discomfort me as the case may be. I'm glad my doctors haven't felt like I needed anything done prior to this time. It has given me plenty of time to heal.
I was pretty anxious about waiting for the results of both of these important tests, especially since they were my very first post-treatment. And even though I was in no big hurry, hey seemed a long time coming. It seemed that other anal cancer patients get them much sooner. I try not to compare like they say, and trust my docs (within reason) because they know a lot more than I do, but it's hard not to wonder about the followup after treatment variations.
This year the gastroenterologist seemed smilier than the last time he did my colonoscopy. I know I wasn't as scared about it. Just get it over with will ya? The good news is they called me a couple days later to let me know the biopsies were clear, scar tissue, no cancer. YAY! That was so awesome to hear. On paper, the three specimens submitted on one slide, looks like this in writing: sections show multiple fragments of squamous mucosa with reactive changes and minimal chronic inflammation. There is no koliocytosis or dysplasia, as confirmed by immunohistochemical staining for P16 and K1-67, respectively. There you go...... pretty simple right! Scar tissue, no cancer. Come back in 10 years when I'm 60.
Moving on to the CT done on 5/14, that is another story. I sat there yesterday in my surgeon's office at 9:00 shaking, worrying, stressing out....... until she came in finally and let me know the results. Again, good news. Even the good news sometimes sounds a little bad. I am always waiting for the next shoe to drop with this thing, but the good news it's all pretty good news. I have these two spots in my lung, that haven't grown or changed at all. Good news. I have these cysts in my liver, normal I guess, which remain unchanged. Both of these things showed on the PET/CT last year but didn't light up as cancer. My docs are "watching" them though. That's why I say the good news sometimes sounds bad. Because you always have to "watch" things once you have had cancer. Then the lymph node, right lateral to the rectum, now measures 5 mm X 5 mm, compared to 1.1 X 1.6 cm on the prior study (5/21/12). Both the surgeon and radiologist think this is very good. We didn't have PET to look at, which would light up any "cancer" larger than 1 cm in size, but my new smaller lymph has shrunk down sufficiently enough that all three of us are very happy about it. Of course, we are "watching" it. Always watchful, alway waiting. I hate that.
So in the end, literally, my surgeon finished her DRE and other physical inspections and reported several times that it feels "perfect". No more tumor, still, waiting, watching. The final "impression" statement on the CT scan printout reads: Since the prior studies performed in May 2012, no evidence for metastatic disease to the chest, abdomen, or pelvis. Good. And meanwhile, I wait.
