Carcinoid and Scanxiety

A couple of months ago my fellow NET cancer blogger Ronny Allen wrote a blog which he  called No Fear about the fear some people experience before their routine scans checking for more cancer.  We often see this called “scanxiety”  He has no fear before those scans and neither do I.  They keep us healthy by allowing us to know what needs to be addressed.

However, I certainly have found I can get anxious if the results are reported to me late as happened last week.  And I can be downhearted when the results are poor as they were last week.

I think it would be instructive to look at my annual schedule of meetings, tests and treatments relating to carcinoid cancer. This is not an unusual schedule for carcinoid cancer.  Bear in mind that this schedule may be mine for the rest of my life!

  • Every 28 days I go to the clinic to have an injection in each buttock of Sandostatin LAR.  This is deep muscle and a big needle. Sometimes it burns. Sometimes one side or the other hurts for several days.  The drug both reduces symptoms and may inhibit tumor growth.
  • Every three months I have a set of blood tests.  Seratonin, Chromogranin A, gastrin (these three are specifically to try to catch disease progression but may not be reliable. Currently specialists are recommending pancreatin and neurokinin A instead). Also, Comprehensive Metabolic Panel, White Blood Cell Differential, Complete Blood Count with Differential and sometimes others.  At least six vials of blood are drawn.
  • Also every three months I meet with my oncologist or a PA and discuss the above plus any other recent scans and tests and to discuss my symptoms and any problems.
  • Every six months I have a CT scan.  It is a triple phase with contrast scan meaning that I must fast and for two hours before the test I have to drink two bottles of barium sulfate (not good) and during the scan they inject an iodine solution into my arm.
  • Annually we do an octreoscan which is a specialized scan in which I am injected with octreotide bonded with some radio isotope and then scanned by a large machine for an hour or more for at least three days.
  • Annually I also have an echocardiogram to make sure that I am not developing carcinoid heart.  The extra seratonin made by the tumors can cause a heart valve to become fibrous and function poorly.
  • In addition, I have had one or two MRI scans. Because of my new pacemaker, we cannot do that anymore. I have also had other tests like the 24-hour 5HIAA urine collection which is supposed to be better than the seratonin blood test but showed nothing for me.

We have to remember that none of these tests are definitive.  The only proof that you have carcinoid is to biopsy a tumor. The blood tests can be inconclusive or wrong.  The octreoscan requires that your tumors have  type 2 octreotide receptors but not all people or even all tumors within one person have those receptors. Tumors can “hide” from CT scans.

After four years of this, I am used to it and in general do not feel anxious about any of it.  The last blood tests showed nothing new.  However, the CT scan last month was a bit different because a) I have felt just a little worse than I have since the surgery two years ago. b) Statistically the surgery might halt progression for about two years.  So, I actually have been expecting some indication of progression this year.  Of course, the results were reported to me 5 or 6 days later than I normally get them.  They reported that the scan detected a small lesion in my liver.

I expected it but it upset me.  I find that I can’t be analytical and brave all the time. Now, having time to consider, I know that we will do nothing but wait for the next scan to see if it is still there and if it has grown.  These things grow very slowly plus I have two smallish tumors in my liver already and I probably have a primary tumor in the midgut area which is still not found.  I hope this year to see a real specialist and develop a plan.

Looking at all this, you might see why some people develop scanxiety.  For me, as Ronnie says, these scans will keep us alive! We should celebrate the technology.

My point here is to give everyone a glimpse into the schedule you might have if are diagnosed with carcinoid or neuroendocrine cancer.  My hope is spread awareness of the disease and the very real impact on one’s life even before you consider the symptoms.



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Carcinoid and Scanxiety was last modified: June 3rd, 2015 by cy

9 thoughts on “Carcinoid and Scanxiety

  1. Thanks for sharing. I am new to the NET thing. Going for the first rounds of ostreoscan, CT scans etc… October 19 – 20 at Moffitt Cancer Center in Tampa. Your sharing does ease some of my anxiety. On the 20th I will learn the treatment plan. On September 17th the main tumor was removed 6cm from my small intestines which had to be resected. I know 18 of 20 lymph nodes were positive and there are 7 known
    Lesions on the liver. Only given 20% chance of surviving the operation is did and 6 days later I went home. On October 6th, I went back to work full time. Thanks again.

  2. Cy, I came upon your blog when furring through e-space. I have been following some of your foot steps through machines and rumors and having my mind blown away . Then I started reading your info and and lights started flashing in my mind. You are helping me understand the medi-bunkle and explaining what are road is like. I felt alone and reading your page has giving me understanding and hope. Keep up the good work.
    Ron S

  3. Thanks for referencing my blog from your excellent post Cy. It’s also great when something is scheduled early or late making it look like continuous testing My car knows the way to my hospital ! CgA and 5HIAA urine remain the gold standard for regular checks over here. I’d be happy to do more checks if they wanted!

    1. Your blog was good Ronnie. It inspired me to talk about what scans “scanxiety” was all about and then to talk about all the other stuff we do during a year. I didn’t even include all the other stuff we get to do; like surgeries, embolizations, colonoscopies, various “procedures”.
      I agree that I would do more if it would be effective against the disease!

  4. Thanks for sharing, Cy! It was once my job to coordinate all of the follow-up scans for our GI patients, but at the time I had very little awareness of what it was like from your side. It really adds up to a lot of your time being taken with these diagnostic tests, not to mention the expense. “Scanxiety” is a great word, by the way! 🙂

    1. Thanks Michale,
      You see the word “scanxiety” on the online support groups often. I didn’t invent it.
      I try to accurately describe the medical stuff yet be readable for a civilian.

      I spend the out of pocket limit on Medicare advantage within 3 months each year.

  5. I love that you spread the word about your journey and whatnots is like. I had no idea the schedule was like this. None. Love you, uncle!

  6. I love that you have a positive attitude. I believe this makes you stronger and better able to cope with whatever you need to do.
    You guys stay strong.

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