Islet Cell Tumors

I am a 55 year old female.  I was first diagnoses with an islet cell tumor in my pancrease in 1989, at age 36.  At that time the tumor, spleen and gall bladder were removed and I became an insulin dependent diabetic.

In 2000, inspite of continuous annual CT following the 1989 surgery, I had a pancreatic attack and a 10cm islet cell growth was found in my liver.  This was resected and I continued with annual CTs.

 In 2005, three new tumors were discovered in the liver.  Two were located in a risky area for resection and the third was resected.  For the two that couldn't be resected, a new treatment called RFA (radio frequency ablation) was performed. 

I've not been treated with chemo or radiation.  My quality of life has been good.  I've found the University of California website to have very good information about current treatment options and is frequently updated. 

I'm open to answering any questions you may have about my life with islet cell cancer.

LC

Hi! LC,

I'm  a person that had an Ilet cell tumor and spleen removed from my pancreas in 1999. As you were having CTs I also was. But the Drs. didn't find out that the tumor had got to the liver. Only in 2005 that I was diagnosteded: I was told, I have Glucagonoma. A very rare type of cancer. 

No one wanted to put me in chemo, because they said that the chemo would kill me before the tumor would respond.

After going to many universities and Drs. I went to MD Anderson in Husto, TX. There I found one Dr, that reconised my case. So she recomended a chemo with 30% chance that the tumors would respond.

I am getting the chemo, and it is responding. The lynph notes are shirinking, the little tumors that are all over the liver are shirinking and desapiring. The big one that was 2.90 in June, is 2.70 now. The fluid around my heart is diminishing.

The Doctor said the slow growing tumors, are also slow to respond. 

I have being able to work 2 weeks between the chemos.

Good luck for you  and please respond,

Maria

On 1/27/2008 Maria Ildonete wrote:

Hi! LC,

I'm  a person that had an Ilet cell tumor and spleen removed from my pancreas in 1999. As you were having CTs I also was. But the Drs. didn't find out that the tumor had got to the liver. Only in 2005 that I was diagnosteded: I was told, I have Glucagonoma. A very rare type of cancer. 

No one wanted to put me in chemo, because they said that the chemo would kill me before the tumor would respond.

After going to many universities and Drs. I went to MD Anderson in Husto, TX. There I found one Dr, that reconised my case. So she recomended a chemo with 30% chance that the tumors would respond.

I am getting the chemo, and it is responding. The lynph notes are shirinking, the little tumors that are all over the liver are shirinking and desapiring. The big one that was 2.90 in June, is 2.70 now. The fluid around my heart is diminishing.

The Doctor said the slow growing tumors, are also slow to respond. 

I have being able to work 2 weeks between the chemos.

Good luck for you  and please respond,

Maria

Hi, Maria -

Best wishes to you as you continue your treatments.  As yet, I've not had the smaller "peppering" of tumors.  The first one in the pancrease (size of a small ball) and the first one in the liver (10 cm) were large and surgically removed.

In 1989, they didn't know very much about the islet cell cancer.  Here in Oregon at the hospital I went to, they only saw one or two cases a year.  Since then the treatment options and treatments have considerably imporoved but you still have to be your own advocate and push for tests, like CTscans.  It's getting better.

 My last surgery was in 2005 and I had three tumors just under 3 cm each.  The RFA (radio frequency ablasion) treatment is relatively new around here.  I went to Oregon Health and Science University (OHSU) where they cut out one of the tumors as it was easier to access.  The other two the placed a probe into the tumor and heated it up to a point that the temprature would essentially burn the cells and cause them to die. 

The problem with this treatment is that few doctors are familiar with the treatment and even fewer are able to recognize the results on a CT scan.  A year ago I was hospitalized for a small bowel blockage and the doctors looking at the CT scan were certain my cancer had returned and that I needed immediate surgery.  What they were looking at was scar tissue from the RFA treatment.

 I think it's important to keep reading information at sound websites such as Mayo Clinic and the University of California as often we know more about our cancer than many of the doctors - although they have better resources!

Take care.

LC

Hi, I read your post with a lot of interest.  My Pancreatic cancer was an Islet Cell tumor in the head of the pancreas.  I had a whipple in 1990 and am fine ever since.  I had no radiation or chemo because my Dr. said I would never survive it.  I lost so much weight and was a shadow of my normal self.  I am followed by blood markers and semi annual oncologist visits.  You have given me much to think about and discuss with my Dr.  Thanks for the info.  I wish you the best and am always available for anyone who needs to talk a bit.

Larry

Hi, Larry -

Thanks for your reply.  It's amazing how comforting it is to hear from others who have dealt with the same condition. 

My initial condition was found when I lost so much blood over a slow period of time because the tumor blocked a vessel sending the blood back through my spleen.  I couldn't stand when I went to my doctor because of the lack of blood, but I otherwise felt great, strange as that may seem.

Near 20 years of dealing with the fact that it can be back at any time and the diabetes has become wearing, and sometimes feels like always picking myself up.  But, my live is good.

 I hope you are doing well and continue to experience no metasized tumors.  My doctors continue to watch the liver, lymnoids, and lungs through bloodwork and CT scans.  I've had my thyroid removed because of a pre-cancerous growth and a complete hysterectomy due to uterine cancer. 

I often joke that they've taken out so much that all they can do now is start putting something back in.  I continue to be amazed at both the abilities of the doctors and at times the gaps in their knowledge, that must be as frustrating to them as it is to us. 

Take care and thanks for writing.  If you hear of anything new with the islet cell arena, please let me know.  In the mean time, think I watch the Superbowl with my husband at home this weekend and enjoy his pleasure in the game.  

Linda

Hi all! I am a 32 yr old female and just had the Whipple Procedure performed on 1/22/08 for non-functioning islet cell (malignant) tumor on the head of my pancreas (just under 2cm). All 28 lymph-nodes removed were clear.

 I had my surgery done by Dr. Cameron at Johns Hopkins. He is so amazing and has performed more whipple procedures than any other doctor in the WORLD (over 1500) !!

 I chose to go to Dr. Cameron for many reasons (experience being number 1) but one reason being that even today no one really seems to know much of anything about these islet cell tumors. I find it very concerning. So many scans, undiagnostic & unsuccessful biopsies and lots of confused Drs. (I also was showing a solid mass on my liver).

I finally just decided I would go somewhere where I could talk to a Dr. with a lot of experience. So cool that when I went for my consult with Dr. Cameron I had a 3D CT scan done and the Radiologist who read my scan was the Dr. who invented it! Talk about feeling like I was in good hands. They were pretty certain about what I had (islet cell tumor on my pancreas and FNH --benign-- in my liver). At that point they said the islet cell had a 50/50 chance of malignancy.

After having the whipple they confirmed that my pancreatic tumor was malignant but consider me "cured" with surgery. Dr Cameron says I need to get scanned something like every 6 months for 2-3 years, then every year for 4-5 yrs then every 2 yrs for the rest of my life. He told me of another patient he operated on 10 yrs ago with the same thing, her scans have been clear until now and she has a few small spots on her liver they are going to remove and she should be fine.

You all are the first few people I have actually found that have had the same thing. I am curious how often you all get scanned that a tumor as large as 10 cm was found. Having just had surgery the idea of future surgery is not a very exciting idea. I do want to have a realistic idea of what my future may hold as far as mestasis so I really appreciate you all sharing all you can.

Thank you!

On 2/16/2008 Mychelle wrote:

Hi all! I am a 32 yr old female and just had the Whipple Procedure performed on 1/22/08 for non-functioning islet cell (malignant) tumor on the head of my pancreas (just under 2cm). All 28 lymph-nodes removed were clear.

 I had my surgery done by Dr. Cameron at Johns Hopkins. He is so amazing and has performed more whipple procedures than any other doctor in the WORLD (over 1500) !!

 I chose to go to Dr. Cameron for many reasons (experience being number 1) but one reason being that even today no one really seems to know much of anything about these islet cell tumors. I find it very concerning. So many scans, undiagnostic & unsuccessful biopsies and lots of confused Drs. (I also was showing a solid mass on my liver).

I finally just decided I would go somewhere where I could talk to a Dr. with a lot of experience. So cool that when I went for my consult with Dr. Cameron I had a 3D CT scan done and the Radiologist who read my scan was the Dr. who invented it! Talk about feeling like I was in good hands. They were pretty certain about what I had (islet cell tumor on my pancreas and FNH --benign-- in my liver). At that point they said the islet cell had a 50/50 chance of malignancy.

After having the whipple they confirmed that my pancreatic tumor was malignant but consider me "cured" with surgery. Dr Cameron says I need to get scanned something like every 6 months for 2-3 years, then every year for 4-5 yrs then every 2 yrs for the rest of my life. He told me of another patient he operated on 10 yrs ago with the same thing, her scans have been clear until now and she has a few small spots on her liver they are going to remove and she should be fine.

You all are the first few people I have actually found that have had the same thing. I am curious how often you all get scanned that a tumor as large as 10 cm was found. Having just had surgery the idea of future surgery is not a very exciting idea. I do want to have a realistic idea of what my future may hold as far as mestasis so I really appreciate you all sharing all you can.

Thank you!

Hi Mychelle,

 I wanted to find out how your recovery is going after your Whipple. I am 25yrs old and was diagnosed with a non-functioning islet cell tumor on the head of my pancreas in January. I am very lucky, since so far the tumor seems to be only 1cm large and the biopsy showed no malignant cells. I will be having a Whipple a week from today- March 5th and am anxious as to what to expect for recovery. I have done a lot of research about the surgery and the type of tumor (I am an oncology nurse so I have had a lot of support), but have seen little about how people typically feel after surgery when they are younger and have this type of tumor. I hope you are doing well! Thank you!

Hello ALL!!

I'm new here and am so thankful that I live in the age of the internet...

I am a 50 (51 in a week)yo female, live in the Seattle area, married for 14 years and have a 19yo son and a 23 yo daughter.I have been diagnosed with a 7mm non functioning islet cell at the head/body of my pancreas.  I have seen a general surgeon at V.M. here in Seattle, that recomends a Whipple, A Dr. at USC that recomends the Whipple and just returned from The Mayo Clinic in Rochester where the surgeon recomends an MRI every 6 months.  He says that the pancreas is too soft to hold stitches right now but if the thing takes off on a growth spurt they will do it right away.  I am now requesting a referral to Johns Hopkins to hear what Dr. Cameron recomends.  I really don't want the whipple but if there is a chance that this thing can be cured NOW then I will ablige.  I too am curios about the details of the surgery.  After diet and care.  I am a flight attendant and need to know what to expect and plan for for work.

It is a frustrating diagnosis as alot of surgeons have performed the whipple on other pancreatic diseases but from what I understand, until the pancreas is damaged somewhat,(it is not right now) it is too soft and complications are EXPECTED.At least in the case of a small tumor.  The slow growing is the frustrating part because it dosn't always seem to be so. I am glad you are all here.  THANK YOU

Cheri