Friday, November 2, 2007

Pancreatic Cancer Awareness Month of November

I am a 16 year cancer survivor

I would like to share my story:

I was working in Abu Dhabi, UAE for over ten years, never been sick nor hospitalized not until April 20, 1991 when I was admitted in a gov. hospital because of fever, itching and yellow coloured eyes. It was also discovered that I have type 2 diabetes. I was evaluated by the hospital, had a complete blood check-up which revealed an elevated billirubin, my ultrasound revealed an enlarged gallbladder, dilated bile and pancreatic ducts. A CT Scan suggested an enlargement in the head of the pancreas so an arrangement was made by the hospital that I will undergo a surgical exploration at the end of the week.

My sister an RN, was not willing that I will be operated in Abu Dhabi because I had no relatives there. What if I'm gonna die? She requested that I will be moved to USA because of her confidence in the institution. I travelled from Abu Dhabi with a stop over in London for a few hours then to USA. After a series of test and biopsy it was confirmed and diagnosed of peri-ampullary adenocarcinoma.

A day before the surgery, my doctor talked to me and without any hesitation, he directly informed me that I have Cancer. It will be an open-close operation. This means that if cancer has spread he will just close it, if its not then I will have to undergo a Whipple surgery. I just could not believe it. It was not denial 'cause I feel that I was very strong. I lost my mother due to cervical cancer in 1988. I thought and prayed oh dear God, why me???? You took my parents and now me??? Please let me live, I'm still young I have so many things to do yet.

My surgery was in May 1991. They found a 3 cm. large mass involving the entire ampulla of Vater. However, there was no involvement of the pancreas nor any mets diseases . The surgery lasted for 6 hours.

I have a good recovery but the first few days after surgery was terrible with all those tubes and gadgets attached in my body, it was not easy getting up, moving and walking around doing my daily post operative exercise.
BACKGROUND:
Cancer of The Ampulla Vater
Carcinoma of the ampulla of Vater is a malignant tumor arising within 2 cm of the distal end of the common bile duct, where it passes through the wall of the duodenum and ampullary papilla. The common bile duct merges with the pancreatic duct of Wirsung at this point and exits through the ampulla into the duodenum. The most distal portion of the common bile duct is dilated (ie, forms the ampulla of Vater) and is surrounded by the sphincter of Oddi, which spirals upward around the terminal portion of the duct. Because of biliary outflow obstruction, carcinoma of the ampulla of Vater tends to manifest early, as opposed to other pancreatic neoplasms that often are advanced at the time of diagnosis.
Curative surgical resection is the only option for long-term survival. Surgical or radiologic biliary decompression, relief of gastric outlet obstruction, and adequate pain control may improve the quality of life but do not affect overall survival rate.
Pathophysiology: Ninety percent of ampullary tumors are adenocarcinomas. Neuroendocrine tumors, cystadenomas, and adenomas represent additional, but uncommon, histologic types. Tumors originate from ductal epithelial cells and usually invade into the substance of the pancreas. In more advanced disease states, peripancreatic tissue and the adventitia of large neighboring vessels, such as the superior mesenteric and portal veins, may be involved.
Lymph nodes metastases are present in as many as half of patients. Pericanalicular lymph nodes usually are the first to be involved. Nodes along the superior mesenteric, gastroduodenal, common hepatic, and splenic arteries, as well as the celiac trunk, are the second station of lymph nodes. Perineural, vascular, and lymphatic invasion are associated with a poor prognosis. Liver is the most common site (66%) of distant metastasis, followed by lymph nodes (22%). In advanced cases, lung metastasis also may occur.
Frequency:
In the US: Carcinoma of the ampulla of Vater is an uncommon tumor; fewer than 2000 cases are diagnosed per year. Ampullary cancer accounts for approximately 0.2% of all gastrointestinal tract malignancies and about 7% of all periampullary carcinomas. Adenocarcinoma of the ampulla of Vater is the second most common periampullary malignancy.
Internationally: Worldwide incidence is not known.

13 comments:

Anonymous said...

Hi Sweelee,
As I type, my mom is undergoing the Whipple procedure for the same type of cancer you had. I am to fly to her a week after her surgery to take care of her as she convalesces. I was wondering if you could recommend foods that will be easily digestible for her and help her gain weight.
Thanks! Worried in Texas.

sweetlee said...

Hi,
Thank's for visiting my blog. The doctor and the nutritionist will advise as to what diet you should follow. However, once you get home, your Mom has to follow doctor's order. Based on my experience, I had soft diet consisting of clear soups, oatmeal it was only in the 3rd week that I was able to eat melon, soda crackers, noodle soup, porridge, soft bread etc. Avoid fatty, acidic foods, nuts, corn or any food that is hard to digest. No milk because this is a gas forming food. A hot meal is the best. She will gain back her weight gradually just be patient. I recall after a month of surgery, I ate corn on the cob and a few minutes later, I threw up and had stomach pain. I usually take Pepto-Bismol liquid when I had stomach pain. By the way, my doctor gave me Pancreatic enzymes pills to help me digest the food. Wait for your doctor's advise.

If you have other questions, pls. don't hesitate to post your comments here. Good luck to your Mom.

Anonymous said...

Hi Sweetlee,

Your story is very inspiring esp that they say pancreatic cancer does not have good prognosis esp here in the Philippines. My father has been diagnosed with adenocarcinoma; the head of the pancreas has a 2.5cm mass. He is 66 and has not been evaluated yet if he qualifies for surgery. We are still on the look out for the best gastro oncologist for him. Anyway, did you also try alternative meds when you were battling cancer? Please do give suggestions on the best thing we should do now.

Thanks.
A fr Makati

lee said...

Thank's for visiting my blog. My mass was 3cm. and I was 40 yrs. old that time. Age is an important consideration for surgery, however, if your father is healthy he will have a good chance of survival. There was no metastasis in my case so I survive. Find a doctor who has experience in doing "whipple procedure" if the doctor will recommend this. You can research in the internet about this procedure. Mine was an open-close case. The doctor said if it's still operable and no metastasis involvement, they will perform surgey. If its not- you will be given the final judgment which was 6 months to live.Some people lived beyond this period but 3 to 5 years is the longest(depending on the case).
I did not try alternative meds.Pls. discuss this matter with your oncologist. Write back if you have any questions. Good luck.

Anonymous said...

A very dear family friend who is 65 years old has recently been diagnosed with pancreatic cancer and surgery is not an option. He has to see an oncologist next week to undergo chemo and/or radiation. I am devastated. He is finding it very difficult to eat and having bowel movements. Just wondering exactly what foods will be easily digestible and cause the least amount of pain for him? He is trying to eat a fair amount of fiber but I need other specific options...any suggestions?

Lee said...

I am sorry to hear of your family friend's condition. If he will undergo chemo/radiation, the more he will lost his appetite. I did not undergo any chemo treatment after my surgery as per advised by my doctor because my case was different. I had soft diet after my surgery. Clear hot soup, rice porridge, no milk as this is gas-forming. This is really a case to case basis. Please visit this website http://cancercompass.com they have interesting topics and diet tips for people undergoing chemo treatments. If you have other questions, pls feel free to write me. Don't lose hope.

gerdie said...

Hi Lee,

Thank God I found your blog. I read your comment in a forum. I think it was PanCan. Now I have a face to match the name. :)

I just had my whipple done last march 14 at Medical City. Same, ampullary cancer. My case is similar to yours. I'm 41 and I was as fit as I thought I was prior to the operation.

I read that the survival rate is 5 years max so when I read about yours which is 16 years, I was encouraged. Of course, only the Lord knows when my time is up.

There was no metastases either. My cancer was stage 2 when they opened me up. By God's grace, the Whipple procedure was operable.

So how do you feel now? How long did it take before you really felt you were back in shape? Was there any change of eating habits? lifestyle?

I'm really curious. :) How about physical activities? Any limitations?

Thanks in advance for the info. God bless you.

sweetlee said...

Hi Gerdie,

I'm glad you made it. It took 6 months before I resumed my normal activities. My surgeon advised me not to lift heavy objects for 3 months.My food was restricted to soft diet for 3 months. I was back in good shape after a year.

After that I can eat anything, my only problem is oily food. My gall bladder was also removed during the whipple procedure.

Limit your oily food intake this will cause gas. Chew your food properly, don't overeat, avoid skipping meals, eat hot meals etc.

By the way, I am diabetic, type 2 (non-insulin) this my major concern now.

How do you feel now? Tell me your experience. Pls write back if you have any questions. I wish you the best and hope you'll survive for many many years like me. I'll be 17 years old next month. I'm 57 still look young. lol

gerdie said...

Hi again...

Initially, I was diagnosed of pancreatitis. When they did tests to find out the cause, they initially thought it was gall stones. Only to find out when they did an ERCP that it was a tumor in the ampulla. Biopsy was malignant. So, instantly, whipple procedure was recommended, assuming it was operable.

I am just surprised by the post-operative measures taken by those whose procedures were done in the u.s. I noticed that most patients go home with feeding tube and don't receive full meal till after a few weeks.

In my case, the doctor had me on full meal as tolerated, 6 days after the operation. of course, liquid and soft before that. though my appetite really didn't come back till 2 weeks later.

It seems to me that my doctor treats me as a regular functioning patient. I could drive a car now and hang out in the malls but of course, my energy isn't as how i hope it to be.. yet. :) Getting there, by God's grace.

I notice my stomach can't handle too much oily food. I have to eat 3hours before bedtime to make sure I can sleep well. I can't overeat because I get this yucky feeling.

I feel that my lifestyle will change because of my operation. Did you have any change of activities even a year after the operation?

Oh, how did you monitor if there would be a recurrence or not? How often do you monitor yourself?

Yes you don't look like 57. I don't look like my age either. :D I hope I live longer than expected for a whippled patient. My doctor said assuming there aren't any recurences of complications, I can live till a hundred years old. Hmmm... I don't like that either. Too long. Hahaha.

sweetlee said...

hi there,

I was surprised why they put you on reg meal. After my surgery they gave me ice chips (my meal & drink) for two days. On the 3rd day when I had my first fart and the following day my bowel movement, they finally gave me a cup of clear soup. Biscuits & soup were my meals for a week. I had a good appetite but my diet was restricted because it was still adjusting to the new system. When I got home I ate shrimps sinigang & steam rice. Breakfast was oatmeal. Canned tuna was my daily viand. After a month I ate anything except corn on the cob.

My daily routine was walking 3 x a day in the hospital hallway. I was discharged after 11 days, good & fast recovery. I was not on feeding tube but instead I was carrying a draining tube for about 2 weeks at home.

After that, I went malling, sightseeing and on the 3rd month I travelled to another state. My problem was the gas pain and irregular bowel movement. That's why don't eat fatty foods.

After 3 years I had a CT Scan just to check for recurrences. Thank's God nothing. I have yearly blood check like LFT(liver function test, liver ultra sound, because this is the organ near our pancreas. Kidney test etc. all are normal. My problem now is only diabetes. I am slim which is my normal built. I like to cook & bake. I eat a lot,but I have to control my intake because of diabetes, ha,ha,ha. My sisters watched me when I eat (they're like police dogs) but I am disciplned, blood sugar test will not lie you know, my sugar level is controlled. I stopped working in the office 4 years ago.

We have good Pinoy doctors now. Were they US trained? How long did you stay in the hospital?

Keep in touch

gerdie said...

We do have good doctors here. My doctor, Dr. Augusto Sarmiento is one of the best in the Philippines. He is like an institution at Medical City and has performed 23 whipple procedures. I'm the last. :) Like us, he looks younger than his age but his hands, according to the resident doctors, are as steady as the day he became a doctor. ;)

From the time I was rushed to the ER, till the day i was discharged, I was in the hospital for 24 days. :( It wasn't till the 14th day that they did the whipple. I had to go through several tests. Ultrasound and MRI. They did an ERCP,thinking it was gall stone that blocked the ampula. Unfortunately, it was a tumor. Thank God the whipple was operable.

The first two days after the operation, i also had ice chips. I had my first fart on the 2nd night after the operation followed by bowel movement immediately. On my third day, they took off my NGT, catheter and epidural anesthesia. I was left with my dextrose and this milk thing that goes through IV too.

I didn't have good appetite during the first 5 days because of this antibiotic that made food taste like rust. But, I started to eat solids on my 5th day, I think. I didn't eat much. Maybe just 2 tablespoons of rice and a smaller portion of viand.

I craved for different food during that time. My first craving was minestrone soup. Then chinese food. :) But most often, I just wanted lots of liquid. Soup, fresh fruit juice... My appetite now is good but yes, I can't eat much. :( Few, small portions.

My doctor wanted to send me home on the 7th day. :) But it was holy week and so i had to stay for another 3 days. It was then when the doc took out the drain.

I think I have to watch my sugar too. I border on the high side. :(

After 3 years pa pala ang CT scan? My doc said, he'll have me do a blood work up maybe in august. But, I will see my gastro-internal doc too. Every month.

It took you awhile before you stopped working in the office. That would mean you worked 12 years more? My work is more on freelance and physically active so that's why I'm pretty much concerned about mobility. I do hope I can travel soon. :) Though I did make it to Bulacan last week, driving. :D

sweetlee said...

Hi,

I rested for 2 years after the surgery. Our family had a business before so I joined them when I came back to PI. Then worked in the office for 3 years but bus. folded so that's it.

I had weekly follow-ups with my US surgeon. Here in PI I had a gastro doc who checked me up every 6 months but he is based in US now. It really all depends on your condition.
Just take care of yourself, listen to your body. If you feel something is wrong inside you don't hesitate to tell your doctor.
I was the 2nd patient for whipple of my American surgeon, his specialty was something else but he did a great job.

How did u discover my blog? Sometimes I join the forum in cancer orgs to give some advises and opinions since I am one of the longest survivors for amp CA.

gerdie said...

thanks so much for all your inputs. i really appreciate it. maybe one day, we can meet face to face. :)

i did a google search for ampullary cancer survivor in the philippines and voila! i found your blog. like i mentioned earlier, i did read about your story, condensed of course, in a forum. pan can i think. :)

thanks again lee and God bless you always!

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