Non Functioning Islet Cell Whipple 2000 Liver Mets 2008

I now have about 10 small lesions in my liver.  The largest one is 1 cm.  Reccomendation is to do nothing.  Next MRI in 3 months to see if they grow.

Do they always grow?  I was told if they start growing I would have about 5 years.  Is this a fairly accurate time frame?

Any responses would be appreciated.     

I am Weill Cornell MedicalCenter.  I had a Whipple in 2000 at Ohio State medical Center.  I am now living in NY and was just diagnosed after MRI with mets to the liver.  I have no idea how long the tumors have been in the liver since thsi is the first MRI.  My largest tumor is 1 CM.  I am just wondering how long I may have.  I want to enjoy the time I have left.       

On 2/29/2008 Shelly91 wrote:

My father was diagnosed with Stage IV Islet Cell tumor in Pancreas in June 2007 with Mets to Liver.  They remved 1/2 (body and tail) of his pancreas.   He has many tumors on his liver and has been told to do nothing.  He has had 3 ct scans/mri in past few months and no changes have been seen.  Islet Cell is slow growing but no guarantee they will not grow at some point.  If you don't mind me asking where are you seeking your medical treatment?

     You might want to get a second opinion.  I have been fighting this cancer since 2000. I have had a whipple operation but once again the tumors have returned and are now once again in my liver.  I have two fairly large ones with a party of smaller ones.  I am currently on sandostatin (sp) shots every three weeks.  Most people just have them monthly.  This helps slow the progression of the tumors. 

     In addition I am taking Xeloda and Temodar.   Both are an oral chemo with little side effects.  I like to take a more aggressive approach to this cancer.   As you can see Im already past the five year mark.  Why not aim for a much longer life span?

Toodles Dog Lover

Hi Dog Lover,

Thank you for taking the time to answer.  I had my Whipple in 2000.  They now feel the liver tumors (largest 1cm) have been there since the begnning.  I just found out about this Thursday.  Still shocked.

Do or have you had pain and symtoms?  My understanding is that 50% die within 5 years and the other 50 within 10.  Any comments or thoughts on this?

From what I have read the recoomendation is to handle aggressively.  My doc thinks they are too small.  I'm in NYC so I will hunt around for someone that might be more in touch with these tumors.

Best

Donna 

I am being treat at NY Pres. Weill Cornell Medical Center.  I was just diagnosed with mets this past Thursday.  I have been told to do to what and have another MRI in 3 months to see if they grow.  The radiologists feel they have been there since my surgery in 2000.

What about your dad?  Have they given him a time frame?  Is he in pain?

I start looking for the best doc in NYC that has had experience with this rare tumor.  

On 2/29/2008 DonnaC10 wrote:

I now have about 10 small lesions in my liver.  The largest one is 1 cm.  Reccomendation is to do nothing.  Next MRI in 3 months to see if they grow.

Do they always grow?  I was told if they start growing I would have about 5 years.  Is this a fairly accurate time frame?

Any responses would be appreciated.     

My husband has been receiving hepatic chemoembolization for 4 1/2 years for his liver mets.  He goes in every 8 to 12 weeks depending on growth if any of the liver mets.  He's never asked for a time frame as far as life expectancy...What other trmts are you getting.

I am so glad you are all responding.  My dad hasn't been given a time frame.  They are also telling him not to treat aggressively.  Basically wait and see.  He has lost over 60 pounds since June, has had a few set backs.  first set back was about 5 months post op, where he had to have fluid drained from around his Pancreas.

 and two episodes since then of intense vomiting for multiple hours.  Once he was hospitalized for 2 days because it was so intense..  the diarreha seems to be a problem but depends on what he eats.

He has only had CT scans and so far nothing has changed.  Nothing new nothing has grown.  I am just beating my head against the wall because I wish there was another answer...

I am SOO sorry for your recent news of Mets to liver.. My dad already had the mets when they found it the first time...  I just want to scream....

Sorry to high-jack your thread.

 Quick question, I'm 33 and had a total pancreatectomy last October due to Islet Cell Carcinoma taking up residency in my entire pancreas.

Long story short,  I had a CT scan done last week.  I figured they'd find nothing, since I was gutted like a fish.  Anyway the CT showed 3 new lesions (since November, nothing was there in the past) in my liver and a possibly enlarged lymph node in the liver.   I'm getting an MRI tomorrow to see if I just had a bad CT or if their is something to be concerned about.

The doctors said when I had my surgery that I would have nothing to worry about in the future because they removed all the islet cancer when they took out my pancreas.    My question, how does stuff pop-up then in my liver?  Is this common?  I know there are a lot of things to get sorted out before I start to worry.  I just saw this thread & it peaked my interest.

Thanks!

On 3/4/2008 Ping-Pong Ball wrote:

Sorry to high-jack your thread.

 Quick question, I'm 33 and had a total pancreatectomy last October due to Islet Cell Carcinoma taking up residency in my entire pancreas.

Long story short,  I had a CT scan done last week.  I figured they'd find nothing, since I was gutted like a fish.  Anyway the CT showed 3 new lesions (since November, nothing was there in the past) in my liver and a possibly enlarged lymph node in the liver.   I'm getting an MRI tomorrow to see if I just had a bad CT or if their is something to be concerned about.

The doctors said when I had my surgery that I would have nothing to worry about in the future because they removed all the islet cancer when they took out my pancreas.    My question, how does stuff pop-up then in my liver?  Is this common?  I know there are a lot of things to get sorted out before I start to worry.  I just saw this thread & it peaked my interest.

Thanks!

Sorry to hear about the pop-ups, especially after the gutting.

I was diagnosed with islet cell in October of 06. I was first told that I should just wait and see (at the time I was diagnosed, I had a small 2cm tumor on my pancreas and two 3cm tumors in the liver). However, 6 months later, the pancreatic tumor had grown to 4cm and not only had the two liver tumors grown, but there were 3 new ones and two infected lymph nodes! (Slow-growing my @#$.) I started chemotherapy in July of 07 and have seen some improvement. However, even while my primary tumor and mets were shrinking, the cancer spread to my ovaries and started growing. FAST. I had to have my ovaries removed 6 weeks after they first found it had spread and in that time the largest tumor went from 3.5cm to 6cm.

So I guess what I'm saying is yes, this stuff can just pop up. Whether or not this is considered a "slow-growing" cancer, you HAVE to treat it aggressively, because you, like me, may be the exception to the rule. Don't want to bum you out, but it's the truth.