A couple months ago I had my routine CT Scan and found out that I have a 2.7 cm neuroendocrine tumor on my pancreas. The radiologist reading the scans looked and prior scans and was able to identify the tumor on those scans (the other radiologists missed the tumor). The good news is that it hasn't changed since 2005, but this came completely out of left field for me because of the tumor's size. I am going to NIH in a couple weeks and was able to get in the pancreatic study, but I was hoping for some encouragment prior to the visit.
I was reading a book tonight before going to bed and even though it was completely unrelated to all things VHL, there was a line that said the author has never known anyone to survive pancreatic cancer and that the mortality rate is 100% (Philip Yancey has researched thousands of cases of suffering for his many books, much of which includes people suffering terminal illness, so he wasn't just throwing out an uninformed opinion). Needless to say, I'm a little freaked out (so much for light bedtime reading). Obviously I'll get more information when I'm at NIH, but I'm hoping that someone's had pancreatic tumors and can offer some hope. I have two little girls, both have VHL; I just want to be here to raise them. That's why I get my scans--scans that showed the tumor earlier but the radiologists MISSED it several times!! Makes me want to go to med school so I can read my scans myself.
Anyhow, I don't really know how long the tumor has been there. I have had digestive "issues" since I was a teen; I've was told years ago I have IBS. I always feel unwell--tension headaches, tired, chronic muscle pain, stomach/intestinal upset. Now I'm wondering, could this be something caused by the pancreatic tumor?
Thanks.
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Pancreatic Tumor
- By lifeandhope
- Posted February 22, 2007 at 1:12 am · 11 replies
- In Health management issues
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Pain Anorexia Pancreatic cancer Kidney cancer
11 replies
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- By Kay3
- Posted February 22, 2007 at 12:57 pm
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Dear Lifeandhope,
Your story of a pancreatic tumor is all too familiar to my family. My husband is also in the pancreatic study at NIH. About ten years ago he was diagnosed with VHL and within a couple of months had the tail of his pancreas and spleen removed due to the number and size of tumors there. He currently has a tumor about 3 cm, that hasn't grown in a few years. He will be at NIH in a couple of months for his tests, and we'll find out whether surgery will be required. Unfortunately, this tumor is at the head of the pancreas, and the whole organ will have to be removed.
Please don't worry yourself by reading about pancreatic cancer. The neuroendocrine tumors in VHL are not related. They do need to be watched and removed if they reach a certain size, as the risk of spreading to the liver increases as the tumors approach 4-5 cm. My husband's last surgery was done laproscopically, and his recovery was fairly quick. As far as digestive problems go, he has some trouble with fatty foods and large meals. I'm not really sure whether it has anything to do with his tumors, although I know in other people that can be an issue.
We also have three children, two of which have VHL. We're very concerned about his next surgery and adjusting to the fact that he will be a diabetic. We also have a lot of confidence in the surgeons at NIH and take comfort in the fact that they are the ones monitoring the growth of his tumors. Hope this helps!
Kay
- By Jacki1
- Posted February 23, 2007 at 10:03 am
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I had my pancreas removed 16 years ago, along with my spleen and gallbladder. I am doing quite well on insulin and enzyme replacement therapy. Not having a pacreas is certainly not a death sentence. And with the modern surgical techniques the NIH is using, anyone who is "watched" closely could do very well for a long time. Also, these days, should a person need pancreas removal, they often "harvest" islet cells and "replant" them, such that the body can still produce insulin. Such was not the case back in 1991. There is even a "Pacreatectomy Support Group" on the internet!
Best wishes,
Jacki
- By donnainflorida
- Posted February 23, 2007 at 10:21 am
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Your story sounds alot like mine. I had a tumor on the tail of the pancreas. These tumors are not the deadly tumors that people die quickly from. These are neuroendocrine which are a different animal entirely. I had laproscopic surgery for this tumor at NIH 4 years ago. I think I was there for 3-4 days, they would have kept me longer, but I was chomping at the bit to get out. I had a 1 year old I was anxious to get home to. I cant say that I had any stomach issues, but
thats not to say it couldnt be. I dont know if you have been to NIH, but I can say that my surgery went fine, and all the doctors and nurses couldnt be nicer. Ask me if you want any more info on the surgery or stay. Donna
- By lifeandhope
- Posted February 24, 2007 at 11:01 pm
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Thank you, everyone, for your encouragement and sharing experiences with pancreatic tumors. It is so good to have this community where we can learn from shared experiences. I am going to NIH in two weeks for the pancreatic study and my neurological workup. Has anyone heard about the kidney cancer protocol being cut? I have a friend who was in the kidney cancer protocol and was told he's out because the funding was cut because of the Iraq war. Are any of the other VHL studies at risk? I hope not....NIH has done well by my family and I.
- By jdwilli09
- Posted February 26, 2007 at 4:41 am
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Hello, I saw that you were under the impression that pancreatic cancer has a 100 percent mortality rate. I wanted to let you know that that is not the case. Although the truth isnt much better. It's actuall about 99%, which makes it the highest of all cancers. But that is becaue it often goes undiagnosed until it is too late. My sister had pancreatic cancer, and had the tumor and her pancreas removed almost a year ago and is doing okay now as far as that is concerned. Wikipedia is usually a pretty good place to find info on things. It's a site that can be edited by users, so just make sure that if you are reading something that they use an external source to back up whatever information you're reading. Best of luck with everything.
- By joyceg98
- Posted February 26, 2007 at 1:53 pm
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What great answers!
Just to confirm what others have already said, the pancreatic cancer that occurs in the general population is a different cell type than what we deal with in VHL. In addition, it is usually diagnosed very late in the process, beyond the point where it can be cured.
The prospects for someone with VHL are much better, but you do need to pay attention. We generally find pancreatic tumors early (because other VHL issues have already arisen), and we find them early enough to deal with them successfully. We are still working out the best guidelines, so getting input from others is especially important here. Dr. Libutti at NIH and Dr. Pascal Hammel in France are the two people in the world who are focused on studying VHL in the pancreas, helping us all learn how they behave and how best to manage them. I am delighted that you have been accepted into the NIH study.
All best wishes,
Joyce
- By joyceg98
- Posted February 26, 2007 at 2:04 pm
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Two other things have not received answers yet... digestive issues, and the budget cuts at NIH.
Digestive issues: Yes, it is very possible that your digestive issues and IBS are connected with the pancreatic cysts and tumors seen on the scans. What tends to happen is that the cysts or tumors press on the little tubules that deliver digestive enzymes to the digestive system, blocking delivery of part or all of the enzymes. Without these enzymes, the body cannot break down some kinds of foods and extract the goodness out of them. Depending which enzyme is in short supply, it might be a problem digestive a certain kind of food. In the extreme, it can look like anorexia. People eat a normal diet, but the body just passes it all through without extracting all the nutrients, so the body is starving in the face of plenty.
The good news is that it is possible to take supplements of these digestive enzymes by mouth. You need to have a long talk with an endocrinologist to get these into the right balance.
Re NIH: For each approved protocol (or project) at NIH, there are different rules about how many people can enroll, what are the criteria for participation, etc. It depends how the protocol was written, or how it was approved at the time. Money is allocated to each protocol for patient involvement, including a budget for travel which may be larger or smaller than another protocol.
The kidney protocol is the one that has been most sharply cut, and the neurosurgery program is next. Nonetheless, there are a few protocols that are still accepting patients: pancreas, pheo, and eye. And it's always worthwhile to ask, because if your case is sufficiently interesting for their research, they might find the money to include you. Don't be insulted if you are not accepted -- they are sincerely doing the best they can.
Best wishes,
Joyce
- By lifeandhope
- Posted April 11, 2008 at 12:56 pm
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I just re-read this post from over a year ago. I now have surgery scheduled for June 2nd at NIH to remove my tumor. Does anyone have any experience on the recovery after pancreatic surgery? My tumor is in the head of the pancreas, and there is a possibility I will need the Whipple procedure, but they are hoping just to remove the tumor. I'm a little nervous about the recovery; specifically, the pain. My spinal cord surgeries were so bad I am quite gun-shy of the whole surgery thing. I do have the utmost confidence in Dr. Libutti and team and feel that I'm in excellent hands. Another question: is there any possibility the cancer cells can be released into my blood stream during surgery and then spread further?
- By katmine
- Posted April 12, 2008 at 11:26 am
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My brother has has several tumors removed from his pancreas a year ago last Dec. He was able to resume his normal activiities within a couple of days. This is not a death sentence. Keep a positive attitude.
- By cathhi
- Posted October 11, 2009 at 1:13 pm
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Donna. Glad you are doing well. Was
your spleen removed along with the
tail end of your pancreas? If so, how do
you feel without it?
- By joyceg98
- Posted October 12, 2009 at 3:37 pm
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Re Another question: is there any possibility the cancer cells can be released into my blood stream during surgery and then spread further?
We have asked this question multiple times, and the doctors have watched carefully to make sure that people do well after this procedure, with no increased risk of metastasis.
We see no additional risk of metastasis from the surgery. They are very careful to keep it contained. If it has already broken open, there is some risk, but the greater risk is keeping that tumor inside you.
Sounds like you have the "dream team" working for you!
All best wishes,
Joyce
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