cancer of ampullary of vater?

I am at a loss. My mom had been diagnosed with  pancreatic cancer in September last year. She had a whipple in October. Since the operation she has continued to loose weight. has never really restored her quality of life- can't really eat. she throws up daily..couple times a day. has really fowl smelling b.m. and has pain in her back and stomach.

a week and a half ago she had a heart attack. my son called 911. i was out of town for work. I rushed back- a 6 hour ride - to learn that she could be a candidate for stents- angio plasty but if she needed a by-pass surgery -that was not an option. In my heart I knew why. but - I had to ask. The doctors didnt want to talk to her or me about the results of a CT scan they had done.

They had run a  CT to see if she had blown out an artery. Thank goodness she didnt. But they saw cancer in her lymph nodes by her heart. I had to request to speak to the cardiologist and the oncologist. They were happy not saying a word. I had to ask them to tell us the truth. My mom asked them to tell me all of what they knew.

They know that she has a rare amplulla of the vater. it has spread to the lungs and lymph nodes in her heart.The also know she has small nodules in her stomach and near where they did the whipple just 6 months ago.

They said she is going to die. Has about 6 months to a year if lucky. The oncologist told my mom she could do a round of chemo to try to slow the growth of the cancer down.

I don't really think that she can decline in her quality of life much more than she already has. Can anyone please tell me how will doing chemo be a good choice? It will give her a month or more? she is not well. She is very tired, loosing weight weekly, and has bad episodes of dizzyness. I was thinking the dizzyness was due to her heart problems. Now I am thinking that the cancer is in her brain.

The cardiologist said that she shouldnt be dizzy because of her heart. That has me thinking that the cancer is in her brain.

We meet with the Oncologist again June 1st. I dont want to be the pesimistic person in the room. I just think that she is much worse than the oncologist had told me. I see her daily. I know she is very ill.  What do you think?

First of all, I would ask for a copy of the report on he scans.  She is entitled to it and it will tell you what you are dealing with.  You might want to ask her to give you a power of attorney to deal with your medical problems so you have the same rights as she does to medical reports.

 As for the chemo, I was told I had 3-4 months without chemo and 6-10 months with it.  I elected the chemo and I'm around 8 months after diagnosis of stage IV PC and doing about anything I want.  I play golf 2-4 times a week with no problems.  The chemo makes me tired but nothing I can't handle.  I'd go for the chemo but that's a decision you all will have to make.  I have no idea what cancer of ampullary of vater is so my advice is only based on PC.

 Best wishes.

I am 64 years old and I was diagnosed with Pancreatic Cancer of the Ampulla of Vater in November of 2006. I had Stage 4 cancer with mets to some of the surrounding lymph nodes. In April of 2008 I had two more tumors in the omentum (sp?) or fatty tissue in my abdomen. I had a second surgery to remove them. I have only accepted Gemzar chemotherapy when I was initially diagnosed which was administered right after my Whipple surgery in November of 2006. I refused Radiation Tx. because the research shows it is perhaps not at all useful in the treatment of Pancreatic Cancers. I have never found another person who has the same type of Pancreatic Cancer as I do to share information with...we are a rare or small group of people I understand. I would welcome hearing from other people in my situation! I have lived longer (almost 3 years now) than was expected and I feel good, have clean CT Scans and blood tests every 3 months and have gained back almost all the weight I had lost. I still have digestion problems with all foods and have to take a drug called Creon which magically helps with the digestion as well as gets rid of the foul smelling stools and horrific gas. I get severe pain on my right side and vomit about every two weeks but the next day I am fine. I go to Mass General Hospital in Boston and see Dr. Lawrence Blaszcowsky at the Yawkey Cancer Center for treatment. My surgeon was a specialist in this type of cancer/surgery, her name is Dr. Sarah Thayer. She has done some ground breaking research in this area as well. Both are wonderful people too! I hope you can get your loved one into a better place...it is a long and difficult journey but not impossible! Regards. D-

D from Mass,

My 65 year old husband was diagnosed with ampullary carcinoma of the vater in Dec. of 2008. Whipple completed and cancer staged IIB with one node found to have cancer cells. The path. report points to the likelihood of reoccurance. He completed approx. 3/4 of the planned treatment with Gemzar. Unfortunately, he experienced severe reactions to the chemo and it was stopped. He gained 40lbs. of fluid which caused breathing problems. He required 4 transfusions and several hopitalizations. Quite a mess!!! Right now he's recovering from the chemo and after a CT scan on 8/19 a new plan will be developed.

Like you, he has huge problems with gas. Just last night he had little sleep because of gas pains and trips to the bathroom. His gut was sore from the gas pressure. Any tips you've found would be appreciated.

It is lonely and scary to be dealing with this rare cancer. We are giving some thought to a 2nd opinion. We trust our oncologist but because of the low incidence of this disease we thought checking out MD Anderson or Sloan Kettering would be good.

Glad to meet another "rare bird", let's keep in touch.

Karen