P.S. from Sunny Susan: This is a prime example of one kind
of information you get by signing on to the Carcinoid On-line Support Mailing-List
via: http://www.acor/com The mailing lists are the places to
ASK questions, receive answers, share experiences, give and receive emotional
support, and make friends all around the world. If you do not want
individual messages, sign on for the "digest" form and only get one or two
consolidated messages each day. I highly recommend the mailing-list!
+ + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + +
Stu's Experiences with the RFA Procedure (Radio Frequency Ablation)
Date: July 3, 2000 (updated Oct. 2000)
This is a documentary of my recent Radio Frequency Ablation for those of you who are considering having it done as a procedure to alleviate liver metastasis problems with Carcinoid. It is too soon to know the medical effects as of this point in time, but I want to pass this on to fellow Carcinoids. My intent is to give you insight into my process of making a decision to do RFA and what extent the disease was present to do this.
History: Diagnosed mid-gut tumor March 1999 (50 years old). Symptoms prior to diagnosis were mostly abdominal discomfort in area of liver. Took about 1.5 years to diagnose. Showed lesions on liver (2) but little or no growth during that time frame, lesions thought to be hemangiomas or something else. Had all sorts of upper and lower GI tests as well as endoscopy, colonoscopy and numerous CT scans. At first (1998) told me I had IBS. Early 1999 began to have flushing symptoms and some diarrhea, but was not able to associate with Carcinoid until March 1999 CT scan showed primary tumor in area of illeocecal valve. Primary resected March 1999 with some complications of bowel obstruction (gas) and central tube used to rid obstruction became infected with staph.
The specialists - Went to see MD Anderson specialist (Ajani) after local oncologist said “wait and see.” Ajani tested and said “wait and see.” Went to see one of the top Carcinoid specialists – Dr. Pommier in Portland in mid-June 1999. Started me on Sando LAR right away. Within two days all flushing stopped and diarrhea was diminished substantially. Up through this time (July 2000) have had two very mild cases of flushing that lasted about 45 seconds each. Diarrhea is basically gone however my BMs have never been solid per se. 5HIAA went down from about 27 to 16 after starting LAR. Started doing Chromagranin A per Dr. Pommier; have been steady at around 51 with no baseline other than post LAR.
Dr. Pommier indicated to me that if something was going to nail me in the short to medium term it would most likely be the tumor activity on my liver. I have been watching the two tumors (2 cm and 2.9 cm) with CT scans for about 2.5 years and there is no apparent growth. He suggested that the best method for removal of the tumors was to do a resection, but if the resection was not 100% successful due to more tumor growth, I could eventually undergo chemo-embolization. His method is slightly different than that of Dr. Warner, but he indicated that he had done around 70 of these procedures and once undergone there would be about a 90% chance of living another 10 years.
Since then I have seen more and more information on cryo and thermal ablation techniques. Neither seem to be as invasive as resection or as time consuming as chemo-embolization as Dr. Pommier explained them to me. I read about the RFA procedures done by others on the Carcinoid list-serve and then saw the note from Rosemary Finley regarding her consultation with Dr. Sielaff. Rosemary gave me Dr. Sielaff’s email address and office number. I sent him an email and he responded quickly. I set up an appointment to meet with him and my records on March 3, 2000
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 are keeping my Carcinoid symptoms under
control doing the surgery is not acutely necessary, and that if I 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 effect 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 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.
I had CT scans done in April at the U of MN hospital. They came back with information that the two tumors were basically the same size as had been previously reported, but that one of them was 3.8 cm in the body’s longitudinal plane. It is important to note that radiologists generally measure the longest distance across a lesion. What Dr. Sielaff ordered was to have the tumor measured in three dimensions. The CT scans also showed some possible disease in the Omentum. I talked to Dr. Sielaff and we agreed to go ahead and do the surgery on June 26 (last week) with the purpose of reversing the Carcinoid growth process and “eliminating” the known tumors in the liver.
The surgery itself – Four days before the surgery I talked to a nurse at the Fairview University Hospital. She told me that I needed to bring in a list of all the supplements that I was taking and said that my decision to stop taking them four days prior to surgery was a good idea. She also told me when I should be at the hospital and how the time would be spent based upon previous surgeries done by Dr. Sielaff. She was very nice and answered all my pre-operative questions that were detail not covered by Dr. Sielaff. I was told nothing to eat after midnight on June 25, 2000.
Monday June 26, 2000 – arrived at the hospital at 5:15. They did all the usual history and making sure I was the right person. I had a lot of extra interviews since U of MN hospital is a teaching hospital I was interviewed by nurses, and residents for surgery and for anesthesiology. Just before putting me under both Dr. Sielaff and the chief of anesthesiology came in to ask me if I had any questions and to reassure me that they were going to be doing the procedures and closely supervising any residents who might be given some of the duties. 7:15 I was under anesthetics. They then put a tube down my windpipe to make sure that it could not receive and gastric juices and they also put in the NG tube to keep the stomach from becoming a problem. At 8:00 they started the surgery. An incision just below my lift lowermost rib was used for the scope and device to inflate the abdomen. An incision just above the bellybutton and the scars of the March 2000 resection to insert the ultrasound probe.
The ultrasound probe found no evidence of tumors greater than 5mm (resolution of technique) in the liver other than the two and the Omentum finding from the CT scan turned out to be scar tissue from the resection. Dr. Sielaff seemed to be real pleased that there was no other evidence of lesions other than the small sand grain sized ones in the mesentery.
The ablation was done on both tumors; the largest was about the size of a golf ball. Dr. Sielaff indicated to me later that I should tell my local radiologist that I had the procedure done because the RFA process ablates some of the healthy liver tissue around the tumor to make sure that the tumor tissue is completely ablated. CT scans for the next several months will appear to have larger tumor activity until the body absorbs the ablated tissue. The RFA probe makes an incision about 2 mm in diameter and has practically healed up on the surface after one week.
I woke up in the recovery room at 12:00, but Dr. Sielaff went and explained the procedure’s outcome to my wife about 10:45. I was in and out of the real world for about another four hours. I was given some “muscle relaxant alias pain relief medication IV at 1:00, again at 6:00 Monday evening and at 1:15 on Tuesday morning the IV infiltrated. The nurse was going to start another IV. I asked what for and she said that there were orders for two more doses of the pain medication IV ordered. I asked if there were alternatives and she said that since I had already eaten a clear liquid dinner and was now given orders to eat some soft foods that an option was to take Perkaset (Tylenol with codeine). I was told I could take one or two and opted for one. That worked just fine.
I went home on Tuesday afternoon around 2:30 after eating a solid lunch (small doses though). Took two more Perkaset and then decided to wean myself from that to just Tylenol. The Tylenol worked just fine. I began a process of walking outdoors three times per day along with mostly bedrest and watching videos of Bill Gaither and his Homecoming singers. I tell you this is the best therapy for me to listen to gospel music. It just lifted my spirits.
On Friday morning we began our trip by car back from Minneapolis to Austin Texas. We arrived last night and I am writing this today. I feel very good, but not enough to lift heavy things or do things athletic. I find that I still have to watch that I don’t eat too much at any setting. I am going to try weaning myself from the Tylenol today. I see my local oncologist’s nurse on Friday July 7 after taking the next dose of Sando LAR to see if my wounds have healed okay.
Will be having my next battery of tests (5HIAA, Chromagranin A and CT scan) in September and should know much more about how I feel. I will try to keep the group updated at that time.
Post surgical update # 1
Most interesting part of this surgery was that aside from the typical associated shoulder pain that occurred for the first two or three days, I had none of the acute pain that was related to trapped gas. In a previous surgery (1995) to remove the gall bladder I chased gas bubbles throughout the abdomen and chest area for about three weeks. Dr. Sielaff’s procedure definitely has a much better handle on this problem than the cholysystectomy surgeon in 1995.
I have been gaining strength all along and by the beginning of the third week I felt as though I could go through a whole day at the office without tiring. My work involves travel so I cannot run through airports and sling roll on suitcases into the overhead compartment in airplanes, but the routine driving to work and working in the office is not a problem.
I had my first check up with the nurses when getting my Sando LAR shot 10 days after surgery. They said the wounds healed just fine. I had some localized pain over the liver, but that went away when I remembered to watch the diet and not eat so much fat. The steak on July 4 tasted great but should have been avoided. I called Dr. Sielaff and told him of this problem.
Dr. Sielaff’s nurse Marie Kramer called me as a follow up and reassured me that most of the localized pain was from the probing and prodding during surgery and that my assessment about avoiding fats was a correct one. I also sent an email to Dr. Sielaff telling him of my status and he responded the next day with an apology for not being able to see me the day that I left the hospital and was happy that I was recovering on schedule.
My next update will be after the tests for Chromagranin A, 5HIAA and CT scans are done in early October. I don’t suspect that there will be anything of substance to report to you before then. So it’s not so bad.
Post surgery report # 2 – I had my Chromagranin A, 5HIAA and CT scans done. The results are that Chromagranin A went down from 51 on the average for the last 3 tests over a year to 35. This is encouraging. The 5HIAA stayed at around 15 where it has stayed. This reading was about 27 when I was first diagnosed and came down to 15 once I started the Sando LAR in June 1999. I may have a slightly more elevated reading than I should because I forgot about what not to eat and had a delicious banana split from the Texas stop sign (Dairy Queen) right in the middle of the 24 hour collection process. Bananas are on the “not to eat list.”
The CT scan showed an increase in the size of the tumors on the liver. I was expecting this from the conversation with Dr. Sielaff who told me that the RFA process includes ablating some of the healthy tissue surrounding the tumors. I sent an email to Dr. Sielaff the day that I discussed these tests with my local oncologist. He responded right away and indicated that he was happy that the Chromagranin A showed improvement and that I was feeling better. He asked that the CT scans be sent to him to be sure that all was going well and to compare the scans with what he had done prior to surgery at the U of Minn hospital.
I have been feeling much better. No flushing at all since the surgery, however the Sando LAR pretty much put flushing to a halt in 1999. The diarrhea has improved. Generally no more than two BMs per day and only about every fifth day do I have runny stools, the rest of the time they are semi-formed.
I should mention (because I neglected to elsewhere) that I also have
metastasis to the mesentery. There are innumerable small tumors (sesame
seed size) in the mesentery and these cannot be ablated or removed surgically
due to the size and quantity. So I will continue to have Carcinoid Syndrome
if not on Sando LAR so that process continues. Like some of the rest
of you I am waiting for the outcome of the testing on the Yttrium 90 radio
isotope work to see if there is something that can be done about the little
buggers with that process.
-- P.S. from Sunny Susan
This is a prime example of one kind of information you get by signing on to the the Carcinoid On-line Support Mailing-List via: http://www.acor/com The mailing lists are the places to ASK questions, receive answers, share experiences, give and receive emotional support, and make friends all around the world. If you do not want individual messages, sign on for the "digest" form and only get one or two consolidated messages each day. I highly recommend the mailing-list!
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