The Whipple Procedure

This is our family the day before my mother's Whipple.

Dr. Cameron scheduled my mother's Whipple Procedure for November 29, 2005. My sister Linda said "pancreaticoduodenectomy" to Dr. Cameron and he was very impressed. I'm sure the surgeons and oncologists have a good time hearing people mispronounce all the crazy procedure and drug names. The Whipple itself is very complicated. It can take anywhere from 6 to 10 hours.

My mother was really scared about the surgery and mentioned several times that this whole thing seemed like a dream.

They took my mother away at around 6 am and the family walked with her to the Weinburgh building. We were able to stay with her for a bit while they prepped her for surgery and we met the anesthesiologist who was very kind. Around 7:30am she was off to the OR and we were sent to the waiting room. The Weinburgh waiting area is really nice. There are comfortable couches and TVs around.



They told us that the OR nurse was going to call us every hour or so to give us an update on how things are going. The first update came around 8:30am. The nurse said that my mother was doing fine and that she would call again in about an hour or so unless the operation was over in which case Dr. Cameron would come speak to us. We knew that it would be very bad if Dr. Cameron came out early as that probably meant that they had aborted the Whipple. It's only after they open up the patient when they make the final determination if the tumor is resectable. So the next phone call was nerve racking. At 10:10am the nurse called again and we all looked at each other since nobody really wanted to take it. My sister Linda went to take the call. When she was on the phone she looked upset so I was really worried. But she came back and said that everything was going fine and they were going to proceed with the Whipple! We were all unbelievably relieved.

After about 6 hours into the surgery Dr. Cameron came out and found us. He was in his green surgical outfit. He said that everything went very well and that as far as he could tell they had removed the entire tumor. I guess they do some pathology tests as they are removing the tumor to ensure that everything was removed. He said they removed about 1/3 of my mother's pancreas and about 1/3 of her stomach. We thanked Dr. Cameron profusely. We were told we could see our Mother in the ICU in a few hours after they closed her up.

My mother spent two nights in the ICU. When we first saw her she was in a lot of pain and also was suffering from a lot of nausea. We had one big scare where her hemoglobin levels were very low and they thought that it was either a faulty test or that it could be internal bleeding. The surgeons were ready to go back in if it was the latter case. Thankfully, the test turned out to have been wrong and a different kind of test confirmed her levels were OK. By the third day she was actually looking reasonably good and we were all happy that she was doing so well.

Consultation with Dr. Cameron

I called Dr. Canto's assistant on Monday to make sure she had done the referral to Dr. Cameron. Bonnie, Dr. Cameron's very nice and helpful assistant called me early Tuesday to schedule. She mentioned that Dr. Cameron's first available appointment was on November 29. I mentioned that we were feeling under some time pressure since diagnosis was so late and asked if there was anything that might open up earlier. She said she would check and call me back later in case there was a cancellation. Bonnie called back around 10 am and mentioned we could see Dr. Cameron today! I learned that it always helps to push and be creative with respect to scheduling - there are often cancellations or other ways to expedite getting an appointment.

Mom, Dad, Grace and I drove back over to JHH for our second visit. Dr. Cameron sees patients at the outpatient center across from the McEldery garage. It was very empty in the waiting room probably due to the holidays. We waited in the examination room and Dr. Cameron came in and introduced himself. He went over my Mom's history with her and she mentioned that she was shocked and never expected this to happen to her. He said that nobody ever does. She asked if there was any hope and he replied: "Sure, there's hope!". We had a really great impression of Dr. Cameron - he seemed very confident and very sharp which was exactly what we wanted to see.

Dr. Cameron looked over her file and said she was a candidate for the Whipple! He said: "How about next Tuesday?". I was unbelievably relieved to hear this. On the other hand I think we were all stunned that scheduling it could be so simple and that it would happen so soon. So we went back home to spend the week together and prepare for the surgery. My father mentioned that we should pray that Dr. Cameron would not have some kind of stressful Thanksgiving family reunion and that he would come back relaxed and well rested for our mother's surgery.

EUS and CT Scan with Dr. Marcia Canto

Dr. Canto is a screening specialist for pancreatic cancer. She is from the Philippines and graduated from the University of the Philippines. We immediately felt a connection to her because our family lived for many years in Manila.

We arrived at JHH on the morning of the 18th and went to the 5th floor of Blalock. My mother had the EUS (Endoscopic Ultrasound) and was very nauseous after the procedure. They had given her morphine for pain and she really didn't react well to this. We then went to the basement for her CT scan and returned to wait to hear from Dr. Canto. Prior to the procedure Dr. Canto had asked my mother about her symptoms. She then mentioned not to worry about the procedure and that perhaps it was not even cancer. I think my mother secretly clung to this hope as we patiently waited for Dr. Canto to arrive with the results.

We waited a long time in a small consultation room and I was worried that this meant bad news. Dr. Canto finally arrived and confirmed that it looked like pancreatic cancer (adenocarcinoma). She mentioned the tumor was about 3.5 cm - larger than we had originally thought. However, she added that the cancer looked resectable which is excellent news as far as these things go. We told her we had already been in contact with a Hopkins surgeon but we asked her who she would recommend. She said: "If it was my mother, I would go with Dr. Cameron". In our initial discussions with the Hopkins surgical assistants, we had heard that once you choose a surgeon you cannot switch. We mentioned this to Dr. Canto and she said it was not a problem and that it happens all the time. She said she would refer us to Dr. Cameron! That was great news and we were happy with that decision. As Dr. Canto departed, Grace said "Salamat Po" which means "Thank You" in Filipino. Although my mother felt really nauseous all day, I think we felt guardedly optimistic that my mother could have the Whipple procedure.

On Monday, Dr. Canto's very kind assistant faxed over a copy of my mother's reports and confirmed that she had referred us to Dr. Cameron. Her CA 19-9 was 801.7. We also received the CT results which stated:

Large mass in head of pancreas consistent with pancreatic cancer with dilated pancreatic duct seen. Tumor appears to extend into the peripancreatic soft tissues. The patient's mass abuts the SMV and the portal vein but there is no definite evidence of invasion seen. Encasement of gastroduodenal artery defined.

1. Mass at the head of the pancreas compatible with pancreatic cancer. Minimal stranding of the mesenteric fat anterior to the mass, suspicious for tumor infiltration. Tumor involvement of the posterior wall of the gastric antrum cannot be excluded.

2. The splenic vein, portal vein, and celiac axis, and SMA are patent. The SMV is patent, but in very close proximity to the mass and possibly minimally compressed.

We weren't sure how to interpret the results but we thought this might put my mother at a Stage III which was worse than we initially hoped for. However, the results seemed to indicate she may still be resectable. In retrospect, going through Dr. Canto for the initial screening and tests was exactly the right thing to do. She had ordered the 3D CT scan (pancreatic protocol) and the EUS and was able to give us a referral to the surgeon we wanted. I believe that any surgeon at the very least would have required a 3D CT scan so going through the screening department first was time not wasted.

I think our mother went through another small bout of depression since we had more results showing that it was pancreatic cancer.

Getting Started

My sisters Linda and Grace had already been starting to do some initial research. Grace, who lives near my parents in Virginia, had spoken to Dr. Hong who wasn't very helpful - he had referred us to a Dr. at Georgetown to do an EUS/ERCP but the tests weren't scheduled till Nov. 22. We looked around and found a lot of information on the web. By far the best resource we found was the Johns Hopkins pancreatic cancer discussion board. There is no better resource than other people who are going through or have gone through this ordeal.

We learned that Johns Hopkins was one of the best places for Pancreatic Cancer which was great because it was located fairly near to my parents. We also saw that surgery was the best hope for treating this disease although only 10-20% of diagnosed patients are eligible for surgery (mostly because of spread or artery/vein involvement). So we began by trying to call the surgeons at Johns Hopkins directly to ask for some advice about how to proceed. I wanted to make sure we had all the right tests lined up to give the surgeons the information they would need to determine if our mother was a candidate for resection. I found it fairly difficult to work directly with the surgery department as a new patient. I heard a lot of conflicting advice from the assistants/nurses. One person said that we may not even need an EUS/ERCP and that the CT may be enough to determine resectability. Another said that we should proceed with the Georgetown tests and only call back after we had the results. I had asked if we could do the tests at Hopkins since I wanted to get in the "system" quickly and she had said that was not possible (this was not true at all). We felt a bit frustrated at this point with the conflicting info and lack of urgency.

So on Monday, Nov. 14 we started driving around to pick up all my mother's records. We picked up a copy of her CT scans and then stopped by Dr. Hong's office to pick up his records. Dr. Hong is a very strange man - we were not with my mother and I think he may have thought we were lawyers because he acted really spooked and was hesitant to give us her records even though I had a note. He wouldn't say anything for many minutes and just stood there - ultimately we got what we needed and drove over to Johns Hopkins. We figured in person was the best way to go. We had asked Dr. Hong if he would do a referral to Dr. Cameron and all he was only willing to write a short note for us.

We had spoken to some Dr. friends and one of them had mentioned Dr. Canto at Hopkins as being a very good gastroenterologist for pancreatic cancer. So we decided to try and find a surgeon to look at our mother's CT scan but also drop off information with Dr. Canto. We got to Hopkins and went to Blalock and walked around the floor where the surgeon's offices were. We ran into an administrator who was really helpful and referred us to one of the surgeons. We had wanted to maybe see Dr. Cameron, but we were introduced to the assistant of another surgeon there. She mentioned that if we went with the other surgeon we couldn't switch later on. So we had to decide if we wanted to try and pursue Dr. Cameron through some other route (he requires a physician referral) or go with this surgeon. We had lunch and called a few people and decided that it would be OK to go with the other surgeon. We left the films with the assistant and then proceeded to the gastro department to leave the records for Dr. Canto. The surgeon's assistant mentioned we would hear the surgeon's initial thoughts on resectability in a couple of days.

Dr. Canto's nurse called us to schedule a 3D CT (pancreatic protocol) and an EUS on Friday the 18th. She mentioned the surgeons would need this data no matter what. We felt somewhat relieved because we were officially in the system at Johns Hopkins and things were finally moving along. We never heard from the surgeon. In retrospect, this all worked out fine and it seems like going through Dr. Canto was the best route to go.

Diagnosis

This is our mother, Kyung Wha Jhong, about a week before her Whipple Procedure. Mom was born on 1/1/1936. She and Dad had just moved to Virginia in February after our father retired from working in Korea. We were happy that they were finally in the US and our family had been planning to celebrate her 70th birthday with a nice trip to Los Cabos, Mexico. Somehow, we always have bad luck with trips to Mexico. On our Dad's 70th birthday we had tried to go to Cancun. But our mother's mother had turned ill and we had to cancel the trip. So this is the second time this has happened and we have decided never to go to Mexico for a family vacation again (bad luck).

Mom had been experiencing stomach pain since April of 2005. This slowly got worse and the pain also spread to her lower back. Her appetite decreased and she lost about 10 or so pounds by the time she was diagnosed in November. We tried early on to prod her to see a Doctor but she was resistant since my father and her were so busy with the relocation. She finally got around to seeing a general practitioner in July who referred her on to Dr. Hong, a gastro doctor. Dr. Hong recommended an endoscopy and a colonoscopy but refused to perform them until my mother received clearance from a heart doctor. She has suffered from some valve problems for many years. So my mother and father had to find a new heart doctor in the area and get a clearance letter. My mother finally had the procedures done in late October and the Doctor said she was very "clean". So my mother asked why she had the pain and she mentioned that a doctor in Korea had thought she might have gallstones. In response to this, Dr. Hong recommended and ordered a CT scan.

The results came back on November 9. I was in Mexico at the time on vacation and my sister Linda called me with the bad news. My radiologist brother-in-law Mike was on the trip with me and mentioned that pancreatic cancer was pretty grim. We found the horrible stats on survival rates for this disease (4% 5-year survival). We were all shocked and felt a lot of sadness that day.