Stu Chalmers Carcinoid Story - continued

June 1999 – Dr. Pommier consulted with me. When I met with him I brought two pages of questions that I had emailed to him prior to my arrival. He answered all the questions. Then he took me to one of the rooms that had a white board and began to explain to me the statistics on Sandostatin, discussed several ways to deal with the liver mets and then he started me out on Sandostatin and gave directions for my local oncologist to follow for testing and trending. Began CT scans every 6 months, 5HIAA every 6 months and Chromagranin A every three months.

In this process I found that Doctors do communicate with each other, but since they are so very busy I have taken on the role of communication facilitator. I take prolific notes when I see Dr. Pommier and then present them to my local oncologist. I highlight recommendations for treatment or for testing. My local Dr. has always listened and followed the instructions and also discussed with me what my thinking and feelings are. I see the local oncologist twice a year, but go into his chemoinfusion area for Sando LAR shots, blood work and CT scans. All of the nursing staff there are wonderful and very caring. I have established a means of communicating with them as well such as scheduling or changing schedules for the above work and asking for advice. They always promptly meet with my local oncologist and get back to me when I have questions within a day.

June 2000 - not much change in markers but three of the tumors on the liver were around 2-3 cm and continuing to grow slowly... I became concerned about them. Started email dialogue with Rosemary in Minnesota (for awhile Rosemary was a regular contributor to the ACOR group. I believe that she passed away a couple of years ago, but she invited me to consult with Dr. Sielaff at the U of MN hospital to talk about RFA and to attend the MN conference on Carcinoid. Went to the conference, saw Rosemary and Dr. Sielaff. My wife and I had the good fortune of having lunch with Rosemary and Dr. Warner.

The following Monday Dr. Sielaff performed the RFA. The result was that the tumors basically were killed. What surprised me was that they continued to show up on the CT scan. Since then I have found out that it is the norm for RFA to kill tumors but that they continue to show up on CT scans as spots. By the way for the RFA I did not consult with Dr. Pommier. The reason that I did not was that I felt that he would prefer to do surgery and cut these tumors out instead of the laparoscopic process that is used with RFA. After the RFA, Dr. Pommier basically told me that he did not think too much of RFA. His reasoning is that at least at that time he did not see the process as effective a treatment as surgery. I do know that OHSU where Dr. Pommier practices his surgery they do teach RFA. Perhaps it has come a long way since then.

The copy below in italics is from a report that I gave to Susan Anderson to put on her web page.

Dr. Sielaff meeting - The meeting started off with him asking me what my history was inclusive of how I was diagnosed with Carcinoid Syndrome. I walked him through the beginning symptoms and to the point of finding out that I needed surgery last year. I also walked him through the visits with Dr. Ajani at MD Anderson and Dr. Pommier in Portland.

He then looked at my films. His first reaction was to ask me when I had my cholysystectomy (gall bladder removal - 1995). He then indicated that the quality of the films was not to his liking. He could clearly see the two tumors on my liver but also saw some other spots that he wished were clearer. He thinks that they are the blood vessels in the liver but the contrast was not good enough to really tell what was going on. At that point it became clear that if he is going to do something, I should have CT scans done by the folks that he has confidence in and the newest equipment that is available to him at the University of Minnesota.

We then discussed my situation. He basically told me some of the same information that he told me before on the telephone. But this was clearer and much more interactive. I will try to get the main points across with this note:

1. When to do Radio Frequency Ablation versus resection (cut it out through major surgery) – He indicated that if there were no other lesions except for what is on my liver a resection would be the best option. Since there are other lesions in the mesentery, a resection is not the only option. Radio Frequency Ablation (RFA) is very good at getting rid of liver tumors. With the exception of a few attempts when they were first learning, the tumors that have been zapped with RFA have not returned. RFA does not have a guarantee that there will not be any other tumors or that more will not grow. People normally have RFA when the symptoms of the tumors on the liver are really getting the best of them and they need symptom relief. He would not say that RFA would get rid of the discomfort that I have with the belching when laying on my right side or back. He said that if it happens it would be great. Since my symptoms are not so bad and the Sandostatin LAR shots are keeping my Carcinoid symptoms under control doing the surgery is not acutely necessary, and that if my symptoms were to get worse or the tumors grow significantly then it would be important to do the surgery.

2. Should I have the surgery done? He said that it is up to me to decide and that the rational that he just explained is all that he could offer. He indicated that the people working with Carcinoid patients are all doing different things and all claiming some level of success, but that this is not a controlled experiment. Ideally they would like to have 100 people have a resection and another 100 people undergo RFA and see what the long term results were, but that is not what is happening. Furthermore he said that people with really ugly CT scans (meaning they have lots of tumors and related problems) can live a long time; and others with relatively clean CT scans have had more troubles.

3. I asked if doing RFA would affect other tumors in the body such as small ones that do not show up with CT scan on my liver or those in my mesentery and cause them to begin to grow unusually. His response was that in very rare cases some inhibitor can be released and cause this to happen, but it is very very unlikely.

4. I asked how the process works. He said that it depends on where the tumor is. In many cases they can do the surgery with just CT scan and a probe that goes through the abdominal wall. In my case the tumors are near the diaphragm and the lung and he would need to do a laparoscopic procedure. This would involve two holes into which one would have a camera and the other some sort of probe that allows them to grope around in more than one dimension with ultrasound. Once they zero in on the actual place, they stick the RFA needle in through the side of the abdomen and guide it to the actual spot where the tumor is. The end of the probe has a series of electrodes somewhat like a Christmas tree. They maneuver the probe so that it is touching the tumor (they can see this with CT scan or ultrasound) and then once convinced that it is in the right place they turn up the RF, which basically generates heat, and cook the tumor. As in any laparoscopic procedure the one probe is used to introduce air into the abdomen in order to separate the organs from each other. The surgery lasts about two hours.

5. I asked how long I would be in the hospital for. He indicated the some people have gone home the same day, but that is if the procedure is an easy one. In my case I should be able to go home from the hospital after one or two nights depending on my recovery. He indicated that it would be 6 weeks before I can do any strenuous lifting, but probably about one or two weeks before I can resume most of my normal activities.

6. The surgery would be done at the Fairview University Hospital at the West Bank campus of the U of M.

7. I asked if it would make sense for him to put a catheter (to use instead of angioplasty) in for future use if I were to have the procedure that Dr. Pommier suggested called Chemo embolization. He said that with the adhesions from the gall bladder surgery and the delicateness of that procedure he would not go about doing that.

8. I asked about why the surgeon did not try to resect my liver tumors March 1999. He indicated that he would not have attempted it either. The reason is that they were not prepared to do so, not knowing that the tumors were metastasis of a Carcinoid primary tumor.

9. I asked if the RFA procedure would be considered experimental and if the insurance company would pay for it. He responded by saying that the process is FDA approved and that his office would make sure that I am covered so that I do not have any misunderstandings if I were to pursue the surgery.

Continued...

For More Information Contact:

Texas Carcinoid Support Group
Carol-Anne Wilson 2609 Windsor Place Plano Texas 75075
Tel: 972-867-4417
FAX:
Internet: carol-anne.wilson@carcinoid-tx.org