We call it Progression

About 28 hours after returning home from the hospital having had a pacemaker implant (and feeling good about it; see: A Pacemaker!?!), I got a call from my oncologist’s nurse with the results from a CT scan that I had 11 days before.

A new lesion was seen on my liver.

Damn.  I guess one day of relief is all we get. We can add the new one to the two lesions that we already know about.

I had liver surgery just short of two years ago.  At that time, I wrote that statistics are showing that debulking (removing as much tumor load as possible) seems to lead to two years of no progression in 50% of the patients. So, it appears that I am just an average kind of guy.

What is progression? I cannot find a formal definition for progression in neuroendocrine tumors. Indeed, there are papers lamenting about the need for a formal definition. My take is that there is visible tumor growth and/or worsening of symptoms. Given that, my disease has progressed. Oh boy.  Luckily the symptoms have changed very little or not at all at this point (except maybe the heart rhythm and rate which we just fixed).

What will happen?  It is impossible to tell now.  A specialist surgeon in the carcinoid field is moving to Denver next month.  Dr. Eric Liu is one of about a dozen specialists in the US. He sees more carcinoid cancer patients in a week than the entire clinic I go to sees in a year. His clinic will be about 4 blocks from the clinic that I go to now.  I plan to demand a referral from my HMO insurer.  We will let him look at everything and help us make a plan.

How wonderful that I am co-leader tomorrow of the Colorado Carcinoid Cancer Support Group quarterly meeting.  I have some listeners who will understand how it feels.

Once again, may we all have the best possible outcomes.

Namaste,

Cy

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We call it Progression was last modified: March 8th, 2018 by cy

7 thoughts on “We call it Progression

  1. Damn, sorry to hear about this Cy. You’re in my thoughts,prayers and meditations. Stay strong, your sense of openness about this is inspiring.

  2. Really sad to hear about the lesion, know that it was unexpected and sure that it makes you feel like crap but don’t despair and keep on keeping on, nothing new for you. If you need anything or just need to talk you know I am always here for you. Love you brother

  3. You are in the same boat as I am – sorry to hear that. I have two liver tumors that have grown and as well as a lymph node. Moved my Sandostatin dose up and going to do an MRI in July to see if stable or still progressing. Ugh…Good luck getting to Dr. Liu, he’s a keeper, especially if he’s in your home town! Glad to hear your heart is working well again.

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