Dad was dx'd with pc on May 27, 2008. We really struggled initially as to the accuracy of the diagnosis. Dad had bypass surgery 5 years ago and at the time lost close to 40 lbs. Prior to bypass, Dad was borderline diabetic, but that abated after losing the weight. However, his dr. had him continue to monitor his blood sugar daily. Along about May 12, 13, Dad noticed his blood sugar counts rising and went to the Dr. After some blood tests showed elevated liver enzymes, they ordered a CT and EUS. The EUS didn't show any tumor, but did show some restriction in the biliary duct, probably contributing to the liver enzyme issue. At this point, the Dr. said it is probably cancer.
My brother and I scrambled to learn as much as we could in the following few days. As you can imagine and as many here have experienced, we were shocked, but convinced we could tackle this beast. Upon consultation with Dad, he agreed to go to the One Day Clinical assessment at Johns Hopkins Pancreas Multidisciplinary Cancer Clinic. I should say that Dad lives in SW Ohio. So, I drove him and Mom out to Baltimore and my brother and sister-in-law joined us. I must tell all of you, that this clinical assessment at JHH was fantastic. We met with several Drs. during the course of the day. We really went to get a second opinion and confirmation of the diagnosis. Secondly, we wanted an assessment of the best treatment options for Dad. They gave us all that, and they were so caring and kind. Unfortunately the news we got wasn't the best, they said that indeed it looks like pc and the tumor is in the head/neck of the pancreas. It is too close to some major artery to be considered resectable. Therefore, whipple is out. Very disapointing for all of us. They also noticed in the CT and PET scans there was a suspicious spot on his lung. They recommended next steps as:
1) Biopsy of Pancreas via EUS FNA 2) Biopsy of Lung via FNA 3) Biliary duct stent placement to insure good bile flow.
Dad's doctors in Ohio agreed to 1 and 2, but they thought the stent placement was too aggressive at this point. So, after the Lung Biopsy showed Adenocarcinoma, we figured the Pancreas would as well and that the lung was probably mets from the pancreas. However, the EUS FNA was done in Ohio and was inconclusive (they didn't get any cancer tissue). They wanted to cut Dad open and do exploratory surgery. He said no way (doesn't really like the Ohio surgeon, seems to want to cut all the time! Imagine that! Also, his reaction when Dad first saw him was that he was going to have a whipple candidate. When we told him we were going to JHH, he wasn't too keen anymore) So, Dad called back to JHH and we scheduled another EUS FNA and while there, we scheduled a stent placement. His bilirubin counts continued to go up.
At JHH, Dr. Jagannath performed both the EUS FNA and ERCP stent placement. Again, what fantastic care at JHH. I can't say enough good things about the Hospital and all the staff. Dad was under the care of Dr. Jagannath and Dr. Theodore Bayless, along with one of Dr. Bayless' fellows. They coordinated care with Drs. Herman and Donehower from the Pancreatic Cancer Center. BTW, his bilirubin count had gone to 6.0mg/L and he was starting to show jaundice. So much for the Drs. in Ohio!
The EUS FNA yielded pathology to confirm the adenocarcinoma.
So back to Ohio, we tried to get Dad to consider treatment at JHH, but he and Mom are much more comfortable in Ohio. This is hard for us to accept, but ultimately Dad's choice and we will support him. The Drs. in Ohio have agreed to consult with JHH Drs., which we are happy about.
It's been very frustrating for us to know that this was detect over 2 and one half months ago, and we are just now starting treatment.
Another source of frustration is they now do not believe the lung is a metastisis from the pancreas.
The Drs. have agreed to start a 5.5 week regime of Gemcitabine + conformal radiation. At this point they said they are ignoring the lung, but they say the Gemcitabine should have some effect on it, too. Their focus is to address the pancreas and if they see response, then go back to the lung. The lung is resectable, but they say no point in doing it if the pancreas doesn't respond.
So, that's our story so far. Like I said, I just found this forum a few days ago, and seems to be a good source of info and support. Looks like we are in for a rocky road.
BTW, I should have said before, Dad is 75, and in pretty good health. He goes to the gym 3 times a week and walk 3 miles on the treadmill and rides the stationary bike for 45 mins. He does have some issues now, the heart seems good and the cardiologist has given him a clean slate for any and all treatments. He had some kidney issues in the past that concern us, and lungs are a bit questionable. He spent 26 years in the Air Force on the flight line breathing fumes and jet fuel, which couldn't have been good. Was never a big smoker, but when he returned from Vietnam, he was smoking 3 packs a day! He quite cold turkey in 1968. All in all, he is as good as he can be physically and he seems to be mentally ready to attack this disease. We did discuss all the options including doing nothing, but he wants to fight this thing, so we are all in support.
Thanks in advance for any advice and support.