A Different Kind of "Not Knowing"

I had a PET scan on Thursday last week and have been waiting in angst ever since for the results. Today is Monday and I don’t see the doctor until Tuesday…at noon. As you already have surmised I am pretty, well let’s just say “aggressive”, as far as the typical cancer patients go. I am a nurse and not perfectly, but somewhat, knowledgeable about the tests they regularly do on me to gauge my cancer’s state of being. I know results can be obtained in as little as 2 hours. I also know that the techs that do these tests know when they monitor the pictures coming in what is normal and what is, well, just “too bad” when they see it. For reasons that still baffle me they aren't allowed to show me my own pictures and while understand they why they cannot discuss them and MUST look and speak to me with painted smiles and soothing voices I don’t know why I cannot even glimpse at my own pictures. As a matter of fact, aside from my radiation oncologists (both Dr. Cutie – sigh…I miss him – and Dr. Anders) and BDM (CT surgeon extraordinaire) no one really ever shows me the pictures. I just get a piece of paper typed with the dictated report from a faceless radiologist’s interpretation of my PET films at my oncology appointment generally a week later. Last September an “area of concern” of only 6mm in size was identified in my right lung and I only saw it in black and white print. Emotionless words on a paper, I too faceless to the reader and represented by nothing more than the pictures that showed my cancer. I remained anonymous to the initial reader, but not to Dr. Ander’s, he shared the pictures with me and we made a plan. The CT that followed 30 days later I got a glimpse of because I insisted not only on seeing the base of my right lung I insisted on taking a measurement of the nodule as well. The techs were stunned that I would not take no for an answer and did the deed. I hugged them both for not requiring me to make a scene.

Now that the cancer is out and I have experienced one “stable” scan result, so everyone is back to their “you’re going to be fine, don’t worry” attitude, the last 3 months have afforded us all a time to “exhale”  as it were. What I want to explain is “not knowing”  the state of my cancer up until the day of my scan is not the same as “not knowing” after it is done. The thing is that now it is recorded somewhere and somebody knows. Even if it is only the radiation techs, who truly know what looks right and what looks abnormal, somebody knows truth. And even if nobody ever looked at it it’s recorded, written down, scribed, etched as truth on a CD or computer file in someone’s in-box. My having peace about not knowing is directly linked to everybody else’s state of knowledge. When everybody doesn't know I feel none of the tension I do now and frankly neither does my family. Everybody is on “high alert”. We go from level yellow to level orange anticipating that level red could potentially be ignited by the scan results and although we are fully prepared with a disaster plan this waiting causes angst. My kids call me more and my family, sister and husband set themselves to “Standby” mode. It feels comfortable when all the world doesn't know, but once the pictures have been taken anxiety sets in and I, and those around me, can no longer draw comfort from my past confirmed remission. The fact that my cancer could be growing again is not what concerns me as much as just needing to know. It’s not that I am indifferent about my cancer returning, I prefer being told to “stand down”, but if one needs to declare a code red status then one needs information. Two plans exist and one will be enacted based on the results we wait for. In the meantime we are in limbo just waiting to know and even though I was happy “not knowing” on Wednesday things are not the same since Thursday…it’s a different kind of “not knowing”.

Danean, Jessicafk11 sent you a hug.
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You do not wait alone, my friend! Even if I had not had a CT scan just this morning, I would be anxiously waiting with you for your results, hoping for all good news! But I guess we both wait to get our verdicts! Praying for great results for both of us! Hugs!
Michele likes this comment
Michele , Well said.. Interesting how this waiting causes a shift in our lives and everyone around us.. I was saying somewhere that there should be a law.. Really and literally .. That any test relating to a serious disease or condition has to be relayed to the patient in 24 hours.. Or it should be part of a hospital/ test facility/ and physicians customer service. That would wow the customer! And set providers apart from each other. Especially since we know how fast the facility can have the results ready.. Hang in here and lest is know! My best, Lori
Michele likes this comment
I too will soon be in your company once again. I finished treatment at the end of March, and at that time they scheduled me for my MED. oncologist F/U on June 14th. Just recently they scheduled my PET scan for the 11th. So even though it's a prearranged wait of 3 days, it's still going to be a long 3 days. I think the only thing making it bearable is knowing that when the results come back I will be disease free. It's always been the waiting as the worst part though. Whether it was waiting for the biopsy to confirm, or the 1s PET scan to confirm it wasn't on my liver (that was a relief after thinking for a month I was stage 4 since the original CT showed enhanced masses on the liver), or waiting on the Chemo, or radiation (didn't wait long for those, just over a weekend). So now I've been waiting since March for my new PET. And after being a member in here for awhile, I can see the waiting is NEVER over. Once I'm confirmed NED, then I can wait for the next scans to see if it comes back. Cancer does suck.
Michele likes this comment
Michele, I cannot imagine what you are going through. This is part of the US medical culture. When I lived in Argentina it was the opposite. When I had a mammogram the technician would come in after I dressed and tell me the results and show the pictures. The films were mine to take away - and share with my doctors if I wanted to! I have all of my mammograms from those years. The same in Spain. We have to stop treating patients who want the information (at a minimum) as if they are children. HUGS!!!
I think we all feel as you do about the wait for results. I use to phone the consultants secretary in London a few days after and ask for a copy of the results which she always sent by first class post as my results appointment was always the following week. When she realised I had a three hour train journey she arranged for me to have my scans in the morning and the clinic in the afternoon so I got my results that day. For the first time on my last visit I was told at clinic that the results were not through but they would phone me. I got the phone call the next day. So it can be done. Take care. We are all waiting with you Hugs Annabelle
Michele likes this comment
Michele, I can remember hearing the expression what you don't know can't hurt you...boy has this cancer thing put a whole new spin on that one...hope you already know or hear real soon... Jeanne
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October 3, 2011

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January 31, 1963

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Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

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Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

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April 20, 2010

September 20, 2010

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