Busy Cancer Day – May 28, 2014

Today was quite a busy day for cancer stuff…

First I met with a Physician’s Assistant for bladder cancer pre-op evaluation.  Had blood and urine tests and EKG.  In return, I gave her this paper:

I have Carcinoid Cancer. Among other things, this means that I could experience Carcinoid crisis during invasive procedures, stress, or anesthesia.

Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome. The crisis may occur suddenly, or it can be associated with stress, chemotherapy, or anesthesia. It is characterized by abrupt flushing of face and sometimes-upper body, usually severe falls in blood pressure and even bronchospasm with wheezing can (infrequently) occur. The attack may look like an anaphylactic attack. In my case it probably would include bradycardia (35 bpm sometimes).

Epinephrine and pressors will provoke – not help carcinoid attacks. Do not use anesthesia drugs mixed with epinephrine.

Attached are two descriptions of protocols recommended and used by carcinoid experts.

Here at Franklin:

Dr. Anondo Paul Stangl used a similar protocol which may have saved my life when he was performing chemoembolization on me and I had a crisis.

Dr. Philip Neff and his anesthesiologist used a similar protocol when I had liver surgery last year. I did not have a crisis during the 5.5 hour procedure.

These doctors are just across the hall from urology if more information is needed.”

NOTE: please have the tumor lab tested for carcinoid as well as the more normal. Let me know of results.

I also printed Dr. Woltering’s protocol and Dr. Pommier’s protocol.

The PA was suitably impressed with the information and said that she would have an anesthesiologist assigned early and make sure that she has this information.  The surgery is scheduled for next week, June 4.  As I have pointed out before, this is essential to insure that a carcinoid patient survives anesthesia and stress and invasive procedures.

Later that day I met a new PA to discuss my carcinoid.  She studied and approved of what I did above regarding carcinoid crisis.  No changes in my treatment for now.

Then I had the Sandostatin injections that I have every four weeks.

We cannot avoid sometimes our day revolving around our cancer!  Thankfully tonight is a meditation meeting.

May we all have the best possible outcomes,

Cy

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Busy Cancer Day – May 28, 2014 was last modified: September 4th, 2014 by cy

9 thoughts on “Busy Cancer Day – May 28, 2014

  1. I can only imagine the thoughts going through the PA’s head as she read this. Was this your idea? If so, good thinking. I am surprised that your regular doc did not prep her for this. It seems like information that is necessary to know before a procedure. May all go smoothly!

    1. sounds like you are not ovewhelmed by the situation, I am glad that you are able to keep your head about you . I am sur e everything will go alright with the operation, hang in there and remember you have our thoughts and love.

    2. Hi Michelle,
      Yes, my idea. We have to be prepared like this even for dental work with anesthesia.
      One of the reasons for this blog is that the doctors don’t communicate well with their patients or other doctors. (I just communicated with a carcinoid who was never told of carcinoid crisis.) It’s a rare disease and many doctors including oncologists do not have good or accurate knowledge of it. I shared one of the protocol documents with my surgeon last year. He has done surgeries on carcinoids often enough and was aware of octreotide protocols and uses one and he admires and knows Dr. Pommier but he had never seen that paper. He then made a plan with the anesthesiologist to use the information. Just before the surgery, they both thanked me for the information.

  2. Cy,

    Great info to share and get out there! I’ve been lucky. My doctors have all seemed familiar with the risks of anesthesia for us “noids” and have been very careful with me. I’ve been lucky though, I’ve never had a “crisis” during surgery–not even my liver surgery! My prayers and thoughts are with you going into this. I have a really good friend who has bladder cancer too! Let me know if you would like to speak with him. I know he’s had different treatments and has traveled to MD Anderson for consults. He just had surgery up at the University of Utah. Big Zebra hugs to you!

    1. Thanks Sharon,

      I am good with my treatment plan so far. It seems to follow the norm.

      Doctors who handle “noids” often usually know about the carcinoid crisis risk. Certainly my cancer team all knew about it and were using an octreotide protocol. However, they were not up with what the “expert” carcinoid clinics are doing now. I find that they often don’t share that information and much other information with you unless you ask questions. The problem is that we start out not knowing what questions to ask. Who would guess to ask about dangers under anesthesia?

      Doctors (including dentists, skin doctors, etc.) who do not have noids as patients often have no knowledge of carcinoid tumor at all much less the carcinoid crisis. We noids must be prepared to educate them and see that they contact our oncologists if possible. I’m told that my oncologist is also contacting the urologist who will do this surgery.

      May we all have the best possible outcomes,
      Cy

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