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I have a small pancreas tumor that is described as an "islet cell neoplasm in the uncinate process (the head of the pancreas)". Has anyone had one of these? If so, what were the symptoms you experienced? Was it removed or treated some other way? I am going to NIH in February and will know more about it at that time. I just wanted to get input from those of you who may be familiar with this. I also have renal cell carcinoma. Thanks!
Kim
Kidney transplant Cancer Surgery Pancreatic cancer Kidney cancer Pain Sutent Stress
My husband had both Islet cell carcinoma & renal cell carcinoma. However, they were both metastatic stage 4 when 1st discovered. Islet cell can either be symptomatic or not depending on if it is over producing the normal pancreatic hormones /enzymes or not. His was non-productive, therefore no symptoms. He was put on Sutent mainly for the more aggressive renal cell carcinoma, but scans showed marked reduction of the islet cell tumors as well.
I'm sure you'll get excellent advice at NIH. To my knowledge, sutent had not been studied much for islet cell cancer, so hope this tidbit can help.
I had a neuroendocrine tumor (islet cell carcinoma) that was in the head of the pancreas. I did not have any symptoms from it, however it was approaching three centimeters so NIH thought it should come out. I had a Whipple procedure in June and they said that they got the tumor out just in time; it was right by the blood supply to the liver and could have spread at any time. My advice is to definitely listen to the NIH folks--they know what they're talking about.
hi lifeandhope,
do you mind telling me what the whipple procedure is like? i have read some about it and it seems like a difficult surgery. my tumor is only 6mm or maybe more since my last scan was in May. i know it will eventually have to be removed...
thank you.
Google "whipple procedure" and it'll explain the technical aspects of the surgery. All that I know is that it was the worst surgery I have ever had, but I did survive. It was painful and I still have 'issues' (like being nauseous after I eat, etc.) Basically they removed part of the pancreas and parts of other organs and re-routed my digestion. It was a 12 hour surgery. They did not intend to do the Whipple, but when they opened me up it was necessary because of the size and placement of the tumor. You are necessarily going to have to have this surgery, even if you do have a tumor in the head of the pancrease. Let me know if you have any other questions; I'd be happy to answer them for you.
Hello, lifeandhope. I think in your reply above you meant to say "you are NOT necessarily going to have this surgery..." right? She needs to be open to the discussion with her doctors, especially since she is going to NIH where we know they have expertise in this issue.
Best wishes,
Joyce
Thank you for the correction--I DID mean that she will NOT necessarily have to have this procedure. My Whipple was done as a function of where the tumor was and what tissue was involved. Each person is different and each situation has to be looked at individually.
Sorry for the typo--I just lost my dad to VHL and I'm not thinking really clear right now. Just trying to get through each day...
I definately knew what you meant. I am so sorry to hear about your dad. It is so difficult. My mom passed in 2000 with RCC and we had no idea at the time about VHL. She was the obvious carrier and now me and my sister found out last year that we have it. I appreciate your help so much. I pray for your comfort and healing...
Kim,
I'm so glad you are going to NIH for care! I currently have several pancreatic islet cell tumors that my docs are watching. They are all under 1.5 cm in size at this time and don't seem to be growing (Thank you God).
I had surgery a few years ago (they thought I had another pheo) and that was when they found the tumors. They did remove several and sent them to Stanford Pathology. The tumors were not active, meaning they were not secreting any hormones (like insulin or glucagon) and I really did not have any symptoms from them and I still don't.
For me, the most important thing to do, is to have my yearly scans to make sure all of the tumors they have located are not growing.
Best of luck to you,
Tina
I have had four MRI scans and one CT scan since my kidneys were removed in August of 2006. All of the scans seem to show cysts on the liver and pancreas. I am relatively new to this whole VHL thing as my case is spontaneous and I don’t have any family to confer with. The doctors that I have spoken with about malignancy are under the impression as am I, that the kidneys are the only problematic tumours associated with VHL. I was also told by my kidney transplant coordinator that the two year wait to be placed on the list was due to the tumour size. When I asked about the wait it came down to the immune suppression drugs and the fact that the cancer may still be in my body. I was ok with this explanation because the doctor also told me that there was no effective treatment for the kidney cancer post op. Now I read about Sutent, can anyone advise me on this drug and the chances of the pancreatic cysts turning cancerous.
Regards
Your pancreatic cysts will not turn cancerous. You only have to worry about the solid tumors, islet cell carcinoma/neuroendocrine tumors. The solid ones can metastisize but your cysts will only be problematic if they cause you adverse symptoms. Make sure to check out vhl.org's VHL handbook--it has all the information you need to know in there. I think you can view it online. Sorry about all your kidney stuff; my Dad had kidney cancer battles for the last ten years. It stinks. Good luck.
Lifeandhope's summary is a good one - "my Dad had kidney cancer battles for the last ten years. It stinks."
Most people who have kidney tumors removed at or before 3 cm are usually able to avoid metastatic kidney cancer. In a word, "it stinks." Yes, there are treatments, but none of them is fun, and none is a sure thing.
The 2-year waiting period before transplant is a bummer, but unfortunately it is usually necessary, depending as you say on the size of the largest tumor removed. If under 3 cm, then the risk of metastatis is low. If larger than 3 cm, the risk rises that there might be cancer cells floating around in your body, trying to implant themselves in some other place.
Our bodies are usually able to kill those seeds. However if your immune system is not working properly, or if you have lowered your immune system to keep from rejecting a transplant, the ability of your body to stop those seeds from growing will also be reduced.
If at the end of two years there are no signs that any such seeds have implanted and are growing into tumors, then you should be just fine going for the transplant.
Today, people with transplants are being excluded from the trials, because we don't know what the drug might do to the transplant, and transplants are too precious to risk in such a study. Once we get drugs with fewer side effects, we will undoubtedly try some with transplant patients, but not yet.
So hang in there, watch your diet, manage your stress, and wait out the two years. Keep up with your scans of other areas of the body. Do everything you can to stay in good physical condition throughout this time so that you are in terrific shape to accept that new kidney and get a new lease on life!
All the best,
Joyce
Sorry to be late to the discussion. The NIH program is excellent - they have been tracking my pancreatic tumors over the past few years. Until recently, the pancreas program there was run by Dr. Steve Libutti. He is moving on to Albert Einstein in NYC in January. Although NIH will continue to be a center of excellence, if you haven't connected with Steve, that might be worthwhile as well. I'm guessing Joyce will have his contact information, as will the staff at NIH.
Good luck and God bless,
Dave
Thanks Life&hope and Joyce appreciate the info. The two year wait was actually up this past August and I am now thankfully on the transplant list. Two years is a long time, but time seems to fly once there is hope of getting better some day.
Regards
If Dr. Libutti is moving on, will NIH replace him or is the pancreatic cancer study done? I sure hope not; those people literally saved my life.
I am disappointed. I was looking forward to meeting him and had heard he was so knowledgeable and well-researched. It is funny that NIH didn't mention it to me. I had specifically contacted him to be able to see him at my next visit. Oh well, I hope they have replaced him with someone similar.
Libutti is moving to New York to set up a new Cancer Center at Albert Einstein Medical Center -- a very nice feather in his cap!
He will be available at NIH a few days a month, by appointment only. He called me to assure me that he is committed to seeing any person with VHL who wants to see him. Feel free to call his office to schedule an appointment -- either at NIH or in New York.
Clearly in New York there will be a regular hospital fee, but insurance should cover it as it would cover any other medical appointment.
Best wishes,
Joyce
Thanks for the info Joyce! I asked NIH if I could see Dr. Libutti there and they replied that I would have to see him outside of NIH and they would not absorb the costs for the consultation. How would that work if he says he can see people there? Would he be separate from NIH but have an office on campus? Do you have his office number? Thank you- you are so helpful!
Why did your surgery(whipple) take 12 hours? My daughter had that surgery in 2006. It took 4 hours. Her surgery was done at SloanKetteringCancerCenter in NY. Her tumor was close to 5cm, and was malignant.They took part of her stomach, intestine,rerouted her bile duct. It was a rough surgery, but she did real well.
Surgery takes the time it takes. It's not about speed -- you want them to do everything carefully and well, not in a rush.
Re Libutti, his bio
http://en.wikipedia.org/wiki/Steven_Libutti
does not yet mention his move to New York. He told me that the transfer of his lab would be happening in the month of January, so he will be in transition.
There is nothing yet on the Albert Einstein website.
Try calling Geoff, his clinical research nurse (CRN) at NIH, and ask what's the best way to book an appointment with him. As for payment, your insurance should be able to help.
Geoff Seidel, CRN 301-451-6742
Best wishes,
Joyce
The Whipple took 12 hours because it is a particularly complicated surgery. They had to remove part of the pancreas, duodenum, and intestine, and then reconnect/reroute my digestive system. They did a fabulous job, but Whipples are notorious for taking forever because there is so much involved. Joyce is right--they take as long as they take--often they don't know how long they'll be until they open you up.
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