Surgery, surgery, surgery, and Sandostatin

by Jillian Emmons

Editor’s Note: Carcinoid/NETs patients often have to make decisions about how to deal with their disease. With this piece, we launch a new series in which patients will talk about their individual experiences with specific procedures. Jillian Emmons was diagnosed with carcinoid/NETs in 2008. She had chemoembolization of her liver in February and March of 2015.

My surgeon told me in 2009 that one deals with carcinoid tumors with the four S’s: Surgery, Surgery, Surgery, and Sandostatin. However, there will likely come a time when the tumors in a patient’s liver are no longer considered operable and another route, such as transarterial chemoembolization (TACE), must be considered.

My situation

There are two reasons a neuroendocrine cancer patient might consider an embolization. The first is that the tumors, despite conventional treatments (Sandostatin or, more recently, Lanreotide), are still growing. The second is uncontrolled carcinoid syndrome.

The goal was to decrease the symptoms of carcinoid syndrome…

I found myself in the latter situation. Carcinoid syndrome varies from patient to patient, but I had uncontrolled flushing and occasionally experienced near fainting episodes. In addition to being uncomfortable and frustrating–symptoms arise when the carcinoid tumors release a large amount of hormones, and that will eventually lead to carcinoid heart disease if left unchecked.

Three ways to go

There are three types of embolization available to patients: bland embolization, radioembolization, and chemoembolization. Therapies must be tailored to each individual patient as we all have different profiles and needs.

…I had uncontrolled flushing and occasionally experienced near fainting episodes.

It was determined that radioembolization was not a good choice for me because 1.) I’m a small person and with repeated treatments would be at risk for hitting my lifetime max of radiation pretty quickly 2.) Radiation exposure is known to contribute to the incidence of cancer. If I were an older patient, this would not be a major concern, but at 35 it is something I consider greatly throughout dealing with my condition.

Arriving at my best route

Bland embolization uses beads alone to cut off the blood source to the tumors. My doctor felt that since more beads are used in bland embolization compared to the two other treatments, clogged bile ducts were more likely to occur–something that is best avoided.

Therapies must be tailored to each individual patient…

This left me with chemoembolization as the best option. As I mentioned before, I’m small. As a result, my doctor decided to use half the chemotherapeutic agent (epirubicin was the drug of choice for me, as it is more gentle on the heart than other options) that he normally would. He called this TACE-light.

Looking at the risks

As with any procedure, there are risks, which I read about in the scientific literature. Abstracts of such papers are readily available to the public. To get a complete copy of a desired paper, all one has to do is write to the author with the request.

He called this TACE-light.

To me, the risks that seemed particularly concerning were liver abscesses, liver failure, kidney failure, and death. I spoke with my physician at length about these risks and came to the conclusion I was unlikely to experience these–and the risk was worth it.

Personal situation

When papers report mortality levels, they include end stage patients whose livers are not doing well at the time of the procedure. The procedure can tip them over the edge and result in liver failure. My liver function tests were perfectly normal and, as such, I was unlikely to be in this group. I had also never had a reaction to contrast, and so was unlikely to experience issues with my kidneys from the procedure.

…the risk was worth it.

Finally, the likelihood of a liver abscess increases with tumor size. This meant the longer I waited to undergo TACE, the more likely it was that my tumors would grow–and the more likely that a liver abscess would form. In other words–if I were going to undergo this procedure, my risks were lowest right then.

So, I leaped.

First procedure prep

I arrived at the hospital about two hours prior to the TACE procedure. I was gowned up and had two IVs placed–one for Sandostatin, and one for the administration of sedatives, etc.

…my risks were lowest right then.

They offered me an Ativan pill to ease anxiety prior to the procedure. The procedure is under conscious sedation and given that anxiety can lead to carcinoid syndrome flare ups, I chose to take the Ativan to, hopefully, lower my risk for any syndrome related issues.

The insertion procedure

I remember the first procedure very vaguely. I remember the placement of the foley catheter. I remember struggling against them, so they had to try three times to place it, which is probably why I remember it. I also remember struggling against the catheter in my groin. I don’t remember any pain associated with either of these two catheters, just that they happened and I wasn’t happy about it at the time.

The procedure is under conscious sedation…

During the procedure, the patient is periodically asked to take a deep breath and hold it. This is the only other thing I remember from round one of the procedure itself.

Initial aftermath

The first night was better than expected. I used my pain pump occasionally, but this was really just for groin pain where the incision had been made. This area continued to be sore for about a week.

I remember the first procedure very vaguely.

At my facility, the required hospital stay is one night. Before I was released, I had to demonstrate a good appetite, ability to urinate, walk around, and of course the doctors checked me over multiple times throughout my stay.

On the home front

For me, recovery from TACE round one felt like a planned bout with the flu. I experienced fatigue, nausea, vomiting, and a low-grade fever over the course of about eight days after the procedure.

The first night was better than expected.

I experienced quite a bit of discomfort in my abdomen. It was hard to get comfortable without using a lot of pillows to support my body. The only way I can describe the feeling is to imagine your liver has been replaced with a large rock. It felt heavy and I was very much aware of it, though I wouldn’t qualify the feeling as pain.

Carcinoid symptoms decline

After about eight days, I felt pretty much back to normal. I continued to limit the amount of weight I lifted to about twenty pounds for the first couple of weeks post-TACE procedure.

…imagine your liver has been replaced with a large rock.

I noticed pretty much immediately that my flushing episodes had decreased in number and intensity. They were visibly less red and most of them were simply a visual occurrence and did not cause me to feel hot.

Follow-up tests

Three weeks after my procedure I returned to the interventional radiologist for a follow-up exam and blood work. I was shown images from my procedure demonstrating that it had gone technically well. Images of blood flow prior to the placement of the beads showed tumors throughout my liver.

…my flushing episodes had decreased in number and intensity.

After the beads had been placed, the tumors were no longer visible on the images as the blood supply to the tumors had been successfully blocked off. Blood tests showed that my liver function tests were perfectly normal–they are often elevated for a bit following the procedure–and my chromogranin A levels which had been hovering in the 1000-1100 ng/ml range for the past year were at 373 ng/ml. The normal range is <93 ng/ml.

Round #2

Round two took place about five weeks after the first round. This time, the left side of my liver was treated. I spoke with the nurses prior to the procedure about the Foley catheter issue and they went above and beyond to make me comfortable the second time around.

… my liver function tests were perfectly normal…

The set-up was the same, but my experience the second time was vastly different. I remember flushing during the procedure. I also remember a lot of pain surrounding the placement of the groin catheter and also when they removed it. Thankfully I had a wonderful nurse who held my hand when I needed it and got me through.

Recovery #2

Recovery the second time was much harder. I had been warned that the proximity of the stomach to the left side of the liver would likely result in acid reflux. I experienced intense burning upon lying down–and once it started, I could not get the burning to go away for a long time. I slept upright to combat that and it did the trick.

…I had a wonderful nurse who held my hand when I needed it…

There was a lot more nausea and vomiting the second time as well. I lost about five pounds after each procedure–though I was able to pretty quickly gain it back. The biggest obstacle to recovery, though, was intense back pain which left me without much sleep. I relied on the prescribed oxycodone to get me through. Back massages also helped take my mind someplace else.

Symptom relief

The second procedure once again left me with decreased flushing. Two weeks out from the procedure my blood work showed elevated liver enzymes. These levels were watched closely and quickly returned to normal. My chromogranin A level was 247 ng/ml.

I lost about five pounds after each procedure…

I will have imaging done in May to show the progress of the tumors, but I feel as though the procedure was a successful one. The goal was to decrease the symptoms of carcinoid syndrome and we accomplished just that.

Editor’s Note: None of the above constitutes medical advice. It is a story about one person’s experience with this particular procedure. Your experience and situation may be very different from what is described here. If you think you are a potential candidate for this procedure, you need to discuss it thoroughly with your doctor. Neither the author nor the editor have medical degrees.