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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
Here is the new contact information for Dr. Libutti at Albert Einstein School of Medicine and Montefiore Hospital. He is still somewhat in transition, but this information should be operational now.
The protocol for pancreas tumors at NIH is now closed. Dr. Mary Beth Hughes, another pancreatic surgeon on the VHL team there, will continue to see patients who are part of the wider VHL protocol driven by the Urologic Oncology program under Dr. Linehan. The chief scheduler for that program is still Cris Leite, (301) 402-6507.
From Dr. Lubitti: "My plan is to continue to see my current patients and new patients once I arrive in New York. My contact information in New York is noted below:
"Steven K. Libutti, M.D., FACS
Vice Chairman and Professor of Surgery
Montefiore Medical Center
Department of Surgery
Greene Medical Arts Pavilion
3400 Bainbridge Avenue, 4th Floor
Bronx, NY 10467
718-920-4800"
Best wishes,
Joyce
thanks lifeandhope. i had a great surgery done at NIH last february to remove a few kidney tumors. my doctors here (at a prestigious hospital in my city) also recommended that i go there for access to more advanced and less invasive surgical techniques. i feel so thankful for my outcome and i really like the kidney doctors i had. you are right that no institution is perfect, but i feel very fortunate to be able to go there.
My tumor was malignant and dangerously close to the liver's blood supply. Whipples take 10-12 hours no matter where you get them done at; they're just very difficult surgeries. Up until the 1970s, most patients didn't even survive the surgery itself (thank goodness for medical advances...) I've had many surgeries at NIH and have had very good outcomes. I have total confidence in the doctors performing my surgeries and haven't had any bad experiences regarding not getting answers. There are a lot of docs coming and going, but that's part of being part of a research protocol. My life had been spared several times over by the folks at NIH--they performed surgeries that my doctors here at home didn't think possible. I know that no institution is without it's problems, but I am grateful for NIH and what they've done for me. They've given me life and hope when other doctors have told me they couldn't do anything for me. On the other hand, my Dad had his kidney cancer treated at NIH and they missed a reoccurance; he is now dead. I'm not saying it is their fault, but they are only human and things do get missed. My Dad may have had a better outcome had they caught they tumor earlier (it was on the scan but the doctors missed it and saw it later when they went back to look at the scan). I'm not one to play the 'what if' game though and he got better care at NIH than what was available here at home. I think that regardless of where you get treatment, YOU have to manage your own care and be proactive. To the doctors, you're just one of many patients. They do their best but you have to be on top of your stuff.
My daughter's surgery was the same as yours, in regard to what they took out and had to reroute and attach. Also they had to take 13 lymph nodes. Her surgeon did an excellant job. Was your tumor malignant? There is one big differance in where you had surgery and where my daughter had her's. NIH is supported by the goverment and that's why patients go there and don't have to pay for their surgery. My sister-in-law went there and had the Whipple done. Almost 12 hours later and 7 blood transfusion's, could not get a honest answer to questions and her written reports had pages missing, one doctor said she had cancer- when she went back for a check-up that doctor was gone, another doctor said she didn't have cancer. My daughter's surgery was paid by insurance. Nothing is done for free without a price. And how do you really know for sure who did the surgery, it could have been doctor's in training, and maybe thats why it took so long. There are to many unanswered questions about NIH, and what kind of research is going on and why. Think about it and think about asking them questions- see what answers you get.
I didn't have any symptoms from my pancreatic tumor. Without my routine screenings, I would have not known I had the tumor until it was too late (READ: Don't miss your screenings!! They're so very important!!) Every person is different, but I think it is more common than not to be asymptomatic. Jeez...sorry for all your pain. It sounds bad; my thoughts will be with you.
I've read everyone's post on this topic, but can anyone give the symptoms of a pancreatic tumor? I've recently been dx'd with etopic ACTH syndrome and islet cell tumors could be one of the many places it is hiding. I have a lot of pain in my sides from the ribcage down to my hips (more so in my right side), but i also have kidney issues and motility issues, so i'm not sure what organ is causing all this. Oh, well, my endo is starting at the brain and working his way down (hope I don't explode by then) ;)
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.
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
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.
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!
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
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.
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.
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
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
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
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.
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
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 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...
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