Neuro-endocrine Tumor

Just found this website. I was diagnosed with Islet cell cancer and it seems to be rare. There is a 15 cm tumor at the tail of the pancreas. Yet I lead a relatively normal life.

 Is there anybody out there that can relate?

  Bill d. 

On 2/13/2007 Bill d. wrote:

Just found this website. I was diagnosed with Islet cell cancer and it seems to be rare. There is a 15 cm tumor at the tail of the pancreas. Yet I lead a relatively normal life.

 Is there anybody out there that can relate?

  Bill d. 

 

Hi Bill,  I can relate.  I'm about to turn 40 and am otherwise the picture of health.  I don't have any symptoms of PC it seems but an ultrasound done for something else and subsequent CT scan reveal an islet cell tumor.  I'm alittle flabbergasted.  My tumor is 2.3cm at the head of my pancreas.  My doctor is recommending a Whipple whether it's malignant or not.  Have you started investigating them and where you might have one done?  Any info?  It sounds like the more Whipples a Dr has done, the better chance you have but I haven't heard how many is enough.  Have you?

Kira 

On 2/16/2007 Chirella wrote:

 

On 2/13/2007 Bill d. wrote:

Just found this website. I was diagnosed with Islet cell cancer and it seems to be rare. There is a 15 cm tumor at the tail of the pancreas. Yet I lead a relatively normal life.

 Is there anybody out there that can relate?

  Bill d. 

 

Hi Bill,  I can relate.  I'm about to turn 40 and am otherwise the picture of health.  I don't have any symptoms of PC it seems but an ultrasound done for something else and subsequent CT scan reveal an islet cell tumor.  I'm alittle flabbergasted.  My tumor is 2.3cm at the head of my pancreas.  My doctor is recommending a Whipple whether it's malignant or not.  Have you started investigating them and where you might have one done?  Any info?  It sounds like the more Whipples a Dr has done, the better chance you have but I haven't heard how many is enough.  Have you?

Kira 

The best place on the west coast for the whipple procedure is UCLA.  Dr. Howard Reber is a wonderful doctor and his residents are caring and efficient.  the nurses at UCLA are the best.  Look up Dr. Reber on the internet. I had the whipple procedure to remove stage 3 endocrine cancer and I recovered well.  I am a 60+ female.

Nikki

Hello Bill D.

I was dx in Nov. 2000 with islet cell carcinoma at stage IV. It is a indolent cance and I have done well with it over the years. A few treatments to control liver mets. It has spread to my bones this past year (2006) but I'm hanging in there. Had radiation to bone sites and things went well. I receive most of my care at Fox Chase Cancer Center in Phila. Pa.

God bless and stay strong..........Ken H.

Dear Bill,

     Welcome to my world.  I have been a cancer patient since 2000.  Like you I was the picture of health.  Now I feel like I am "special girl."  I have had four surgeries to remove cancerous tumors.  The biggest was a modified whipple procedure.  They removed  a tumor  from me about the size of 1 1/2 fists.  I was startled as I had must have had this tumor for years without any warning signs.  I did the gym thing three times weekly. 

     As a mom of two boys, this put a cramp in my schedule.  I currently have shots every three weeks which keeps me functioning.  I feel like a work in progress.  Ha-ha.  But all things aside I am doing well.  I still have 5 neuro endocrine tumors in my liver.  All is well until they start growing again and will have to be removed.  I have already had 60% of my liver removed.  Hopefully that will be more later than sooner.  I know that operation and it's not fun. 

     Best of luck.  Just find a doctor that you love and follow his instructions.  Believe me, I know that not all doctors can help with this type of cancer.  I went to many who did not feel qualified to help as this cancer if so rare.

Toodles

Beth