Secondary Malignancies Are More Common Among Carcinoids

Since I found that I have bladder cancer, I have realized that I saw a lot of secondary cancers amongst the members of the carcinoid support groups that I frequent on the web.

A little googling reveals that some in the medical community have realized for a while that carcinoid patients have a higher incidence of other cancers than the general population.  This is one of several articles that I found relating this information:

“Neuroendocrine Tumors and Second Primary Malignancy-A Relationship with Clinical Impact?” 

Obviously, this means that us ‘noids need to be observant and careful to look for signs of other cancers.  We also need to make sure our oncologists and general care physicians are aware of this.

As usual, no oncologist that I know of has warned their patients of this possibility.  Why won’t they share information?  Many do not have the information because carcinoid is  rare.  Many believe that it is not malignant or is not a cancer because it grows slowly.  These beliefs have been debunked thoroughly but they (and sometimes the medical schools) have not gotten the message.  As patients, we must be brutal sometimes in educating our doctors and pursuing better treatment options.  We always should seek second opinions from those few doctors who are known experts in the disease.

May we all have the best possible outcomes,

Cy

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A Different Cancer!

As I told you in CT Scan News a few days ago, a lesion was found on my urinary bladder by the latest CT Scan.  I saw a urologist today and I have bladder cancer!  This appears to be the same as one of my brothers who was treated for bladder cancer about a month ago and I will have the same treatment when I return from Europe in a month or so.   My brother Dave is doing well from his treatment.

It’s called scraping the bladder.  It is normally an outpatient procedure but for me there may be a complication (of course!) because the cancer might be blocking a duct from one of my kidneys and also because I am carcinoid so the anesthesia could cause carcinoid crisis.  We won’t know until we get there.

I told you in The Nicest Thing an Oncologist Ever Said to Me that there is no known reason for carcinoid cancer and our own actions cannot be blamed for it.  This bladder cancer is not the same.  Generally, the docs blame smoking for this one.  I quit smoking about eight years ago but I smoked for about 40 years.

It seems that I can thank carcinoid cancer for causing the discovery of bladder cancer at a relatively early time.   Never thought that I could be grateful for carcinoid.  Now I’ve got to educate another doctor about carcinoid crisis.

As always, may we have the best possible outcomes,

Cy

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Chillin It has a lot of downloads!

My song “Chillin It” has had a thousand downloads on Soundcloud!   This is enough that they want me to upgrade to “Professional” before they will allow any more downloads of the song.  I have opted not to spend the money for that.   So here is the song and a link for downloading:

Download

With most browsers, you should right click on the Download link above and select “Save Link As”. It has a download link on the Music page as well.

Of course, it is very pleasing that so many people have chosen to download and listen to this song. None of my others come even close. Perhaps there is a demand for ambient music that I was not aware of?

I have not produced any new music for a while but I am currently working on a new piece. Maybe I can get it out this month.

May we all have the best possible outcomes!
Cy

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Cardiac Concerns Spring 2014, CT Scan News

Finally!  I have a report from the cardio doctor.

Basically:

  • There is occasionally slowing down of the heart (bradycardia).  This could be treated with a pacemaker.  They say I don’t need to have a pacemaker until the condition makes me uncomfortable.  I knew all of that already.
  • There is an irregular beat in one portion of my heart.  It beats slightly ahead of the rest of my heart.  No treatment suggested.
  • There is little or no sign of atrial fibrillation (AFIB) which was the major problem in 2012.
  • A very important finding.  There is no sign of Carcinoid  Heart Disease, which is a problem of heart valves that occurs in patients with metastasis to the liver.  I am checked for this every year.
  • No change in treatment is recommended.

So, it’s all good I guess.

On to the next thing…

At my age you cannot walk past a doctor’s office or hospital without some new diagnosis.  It’s a drag sometimes.

As you know, I have a CT Scan every 3 to 6 months to keep watch on the carcinoid.  My latest scan was March 19.  I just received the news that there is no change in the liver tumors which is good.

But, (I hate “but”, don’t you?) they have seen a lesion on my urinary bladder.  A lesion is any abnormality or damage in the tissue.  Medicos use the term lesion for tumor as well.  I am now scheduled to see a urologist for a cystoscopy (they look inside through a long tube which I know from experience is not very fun).   Yippee! Yet another doctor in my contact list.

While we do not know that this is anything serious, I felt that I should at least inform myself a little.  Searching the web, I find that

  • Carcinoid of the urinary bladder is extremely rare. If this case is carcinoid then it could be my unknown primary or it might be a metastasis (very, very rare).
  • Most lesions on the urinary bladder are malignant.
  • Many lesions of the urinary bladder are fairly easily removed and maybe cured by cystoscopy.

So what?  We don’t know at this time how any of this relates to me and my own, personal bladder, liver, and carcinoid tumors.  We are each different.  I am going to choose not to worry until there is more concrete data to discuss.

I presented the above material more as educational about carcinoid.

May we all have the best possible outcomes,

Cy

 

 

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NIH Study on Familial Carcinoid

I was providing information to a person who left a comment on the My Story page and realized that I had not written a blog about this yet.

It’s important!  NIH Study Natural History of Familial Carcinoid Tumor.   

The above link is for a study being connected by the National Institutes of Health Clinical Center.  Members of families in which two or more blood relatives have had small bowel carcinoid tumors  are eligible to participate.  Participants will have a medical evaluation every 3 years.  If the participant already has carcinoid or are considered at risk for carcinoid will have tests and scans explicitly for carcinoid.  If mid gut carcinoid is found then the participant will be assisted to determine the best course of treatment for them.

This could be life saving!  Carcinoid is known to run in some families.  I would encourage anyone who may qualify to contact NIH for more details.  They are recruiting participants now.

May we all have the best possible outcomes.

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A Study on Carcinoid

A few days ago,  I searched for any studies on carcinoid tumor that I had not read before.  I found this:

A 5-Decade Analysis of 13,715 Carcinoid Tumors

This has some interesting survival data and more.  Most interesting to me, it is the first actual published study which I have seen  that states that surgery does indeed lead to longer survival. It was published in 2008.

I hope to see more news and advances in the treatment of carcinoid.

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Cardiac Concerns Continued

I am still wearing the event monitor but only for a few more days.  The cardiologist’s nurse called yesterday to tell me that so far there is little or no sign of atrial fibrillation and they believe the drug that I am taking for that is working and probably shouldn’t be changed.  There are a few occurrences of slow heart rate and it could be treated with a pacemaker but does not seem necessary unless the low rates make me uncomfortable or likely to pass out (I don’t get that feeling).  There is an irregular heartbeat but again there is no recommended action unless it make me feel bad.

So, for now,  I think we will just watch and wait.

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Cardiac Concern Part 2

As I mentioned two weeks ago (Cardiac Concern), I had to wear a Holter Monitor for a week because of a low heart rate incident.  I did that and turned it in and waited for week.  There was no call from the cardioligist, so I called them on Friday.  They were confused because they had intended to order it for me to wear for the monitor 30 days but instead it was ordered for 7 days.

I had two incidents of atrial fibillation symptoms during that time.  Those symptoms had not occurred since long before my surgery last year.  I was working on installing ceiling lights in a kitchen and apparantly working with a heavy fixture over my head brought it on.  The cardioligists did not seem concerned about that.  However, there was at least one event that I did not detect but the Holter Monitor did detect when my heart rate fell to 35 again.  They still don’t know why or what to do.

They have decided that I must get fitted again tomorrow for the monitor and wear it for 30 days this time.  I hate that because going to the gym is embarrassing with the electrodes on your chest and the wires hanging down and also I wouldn’t get to use the therapy tub or steam room.  Oh well,  maybe we will figure it out this time.

Again… More will be revealed. Maybe.

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Carcinoid Crisis Part 2

In February 2013, I blogged information about Carcinoid Crisis which is a deadly condition that can occur when a NETS patient undergoes anesthesiology and surgery or other invasive procedures (Carcinoid crisis protocols).

There is a link in that article to Dr. Rodney Pommier’s paper (Carcinoid/NET Cancer Specialist Rodney F. Pommier, MD on Carcinoid Crisis and Surgery).  This was used for my surgery and deserves a close look by patients, their surgeons and their anesthesiologists especially if the patient has carcinoid syndrome.

I have just run across Dr. Eugene Woltering’s protocol for preventing crisis during surgery. Dr. Woltering is Professor of Surgery and Neurosciences, Chief of Surgical Endocrinology, Director of Surgical Research, LSUHSC Neuroendocrine — Carcinoid tumors.  He works at NOLA NETS : The Neuroendocrine Tumor Clinic.  Here are the protocols:

“The NOLA NETS group uses this–others use less–can’t speak to their
results but even with these “higher than others” type dosing we have had 2
carcinoid crisis out of about 300 OR visits–

Two hours before surgery give 500 micrograms of octreotide acetate IV Push

Then start a 500 microgram per hour IV infusion —– start this
immediately after the IV push and
continue infusion during and after surgery

Depending on the severity and duration of surgery—– taper the infusion
over 1-24 hours–say for
colonoscopy taper over 1 hour– after huge liver cases taper over 12-24
hours

If patient crashes don’t use pressors (except as a last resort if the
following fails)– use fluids and 1-5 mg bolus of octreotide (can repeat)–
for malignant hyperthermia use dantrolene in normal doses

If all else fails print this out and hand it to your anesthesia person
along with
my cell phone number 504-884-3555-if the get into trouble have ‘em call me
day or night.”

The above is also an important piece of knowledge for the patient, surgeon and anesthesiologist.  The Doctors should review both of these protocols when planning surgery on a patient with carcinoid syndrome or any carcinoid condition.

EDIT: As Paula reminds me below in the comments section, we carcinoids need to tell our doctors, dentists and anesthesiologists that epinephrine is an allergy and should only be used as a last resort.  I have done this and have not had problems.  It might not be true if you do not have carcinoid syndrome, but it won’t hurt.

I believe that patients must be proactive here because any surgical team that does not normally handle carcinoids will not be aware of the potentially deadly carcinoid crisis and how to prevent and/or treat it.

As usual, the patient is their own best advocate.

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Cardiac Concern

About two weeks ago, after a workout and lunch, I stood up from my desk and felt a distinct fuzziness in my head and it did not go away. I immediately grabbed a heart rate monitor that I have in my office and watched the numbers. My heart rate was 35. It climbed back to 55 after about 15 minutes and I felt fine.

Early this week, I mentioned the episode to my Oncologist during my quarterly visit with her.  She messaged my Cardiologist who conferred with my Cardiac Electrophysiologist (that’s a mouthful).  My Cardiologist had me come in yesterday and have an echocardiogram (ultra sound of the heart).  Also, I got fitted with a Holter Monitor that I must wear for a week.  A Holter Monitor is a little black box that is hooked to EKG style sensors on your chest.  It has a “Symptom” button that you press whenever you feel any cardiac symptoms occurring.  It then saves the 30 seconds prior to the button push and some time after the button push.  The monitor also saves any cardiac events that it senses even if you have not pushed the button.  When the device’s memory is full, it beeps and the patient has to dial an 800 number and have the monitor send it’s data to a collection point.  Employees at the collection point may ask you what you felt and record that data as well.  Your doctors can then review the data online.

I have worn one of these before when I was having a lot of atrial fibrillation.  At that time there were a lot of symptoms.  This time, I think there will be few or none.  Since my liver surgery last year, I have had no symptoms until two weeks ago.  I believe there is some connection between this heart slowdown (bradycardia) and carcinoid tumor or perhaps the Sandostatin injections that I get every 4 weeks.  However, years before I was diagnosed with carcinoid, my resting heart rate could fall to as low as 42.  Was it because I already had developed carcinoid tumor?  No one knows.   My doctors are doubtful of a connection between carcinoid and afib or bradycardia for that matter.  There is a known connection between Sandostatin and afib about 15% of the time.

“More will be revealed.”  Maybe.

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