CancerCompass message board discussion started by DonnaC10 on 2/29/2008 http://www.cancercompass.com/message-board/message/all,21482,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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.       DonnaC10 Fri, 29 Feb 2008 00:00:00 GMT 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? Shelly91 Fri, 29 Feb 2008 00:00:00 GMT 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?  DonnaC10 Sat, 01 Mar 2008 00:00:00 GMT      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 Dog Lover Sun, 02 Mar 2008 00:00:00 GMT 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.BestDonna    DonnaC10 Sun, 02 Mar 2008 00:00:00 GMT 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.      DonnaC10 Sun, 02 Mar 2008 00:00:00 GMT  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. mangab1 Mon, 03 Mar 2008 00:00:00 GMT 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.... Shelly91 Mon, 03 Mar 2008 00:00:00 GMT 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! Ping-Pong Ball Tue, 04 Mar 2008 00:00:00 GMT  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. jenbot Mon, 07 Jul 2008 00:00:00 GMT Hi I was diagnoses with non-functioning Islet cell Carcinoma in feb 2007 after a bout of pancreatitis. They performed a subtotal pancreatectomy and declared me virtually all cure.  In Dec 2007 I started to have general "nothing symptoms" and just mentioned them to my surgeon, thinking I was being paranoid. He sent me for an MRI which showed up  2 lesions in my liver. They were biopsied and came back as mets. I had a liver resection but during the operation, my doctor discoverd 11 mets. He removed as much of my liver  as he could (about 75%).  He said if they reoccur in the liver he would remove the liver again (the liver luckily can regrow). If it reoccurs in the part of the liver that he can not remove, then he will do SIRS (a kind of radiation therapy).  Basically the plan is: MRIs every 4-6 months and wait and see.  The reason I had a liver resection is because my doctor said I was too young to do nothing. I am 38 and a mother of two young children.  As for time frames, I asked my surgeon how long i had, he shrugged his shoulders, and said it was too early to tell, but that he was going to do everything in his power to make sure we grow old together. I guess the morale is, make sure you find a great doctor you can trust. And be assertive when it comes to your health. I kick myself everyday that i didn't push for tests earlier. I have been getting general aches in the pancreatic area for about 8 years. I would go to doctors and actually say "I think there is a problem with my pancreas" and they would say I was fine and that everyone gets aches and pains. I began to doubt myself, so I ignored them. I wont do that again.  aussie123 Tue, 29 Jul 2008 00:00:00 GMT Hi Shelley91 I would tell your dad to forget the CT scans and go straight to MRIs.  All the CT scans I have had have been inaccurate, so my Doctor wants me to have MRIs only, as they are more accurate and superior, and less risky. aussie123 Tue, 29 Jul 2008 00:00:00 GMT