My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, December 27, 2007


I was feeling just a bit unsettled today, I have another pending CT scan. I've had that on my mind for awhile. The requisition for the scan has been on a bulletin board in my room waiting for me to schedule it.

Even 6 1/2 years out, CT scans make me uncomfortable. CT scans make us all feel vulnerable, they keep us in limbo.

I'm in the cancer community now and talk to cancer patients daily. I am familiar with cancer recurrences. I have relationships with people who are dying of cancer. Cancer is a sneaky and vicious disease. Once in awhile I hear of a cancer patient who has a recurrence after 5 years. I know too much to become too complacent about cancer.

My doctors keep checking...and checking...and checking my tumor markers. They've been checking them every few months for years now. Just now one is elevated, just a bit, for the first time. So I decided to go ahead and schedule the scan.

It seems no one uses the "cure" word nowadays, we are in "long term remission". That phrase makes it sound as if we still have cancer, that it just isn't active at the moment......implying that it can recur at any time. Implying that we can never move beyond oncology appointments and cancer follow-up testing.

It isn't as bad for me as it used to be. I used to be terrified of impending CT results. But CT scans still make me edgy.

I hope someday someone will use the word "cure" in regards to my cancer. That I will be able to stop being tested for cancer. A friend of mine is 83, she survived colon cancer diagnosed at age 40. She just quit her annual colonoscopies at age 80. Forty years of annual colonoscopies.

The testing goes on, and on, and on.....


Graham Davies said...

I know just how you feel about CT scans, Carolyn. My last scan was in August and looked very positive, with no signs of the cancer returning, and small slivers of PMP jelly that were visible in earlier scans were shrinking and even disappearing. Both my surgeon and my oncologist agreed that they didn't need to see me for another year, but I asked for another CT scan in March just to make sure. But, of course, I then get nervous around the time of the scan and while I wait for the results.

Right now, however, I have put all this at the back of my mind. Christmas went well, the New Year's celebrations are forthcoming and I'm still here - in remission (not "cured") but feeling fit and well for my skiing holiday in Austria in two weeks time.

I wish you all the best for 2008 and for many years to come!

Carolyn Langlie-Lesnik RN BSN said...

Hi Graham! Great to hear you are still doing well. Thank you for the good wishes. I will think of you in March when you go for your next scans.

I wish you a wonderful holiday season, and a fantastic skiing holiday. I also wish you many more years of happiness and good health. Take very good care!