Hi everyone
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Stacy-Welcome and sorry you had to find this amazing family. I am a CC survivor from Wood River IL. (I used to live in Mt. Carmel, really Lancaster!!) I am alive because of Dr. William Chapman at Barnes in St. Louis. Are you using Barnes?? We also have another CC member form Olney. She is using MD Anderson and went to Barnes for consultation.
There is nothing in the “advice column” to add, and can only repeat the most “expierenced doctor” is soooo important!! You are very lucky because you have one of the best CC centers in your sites!! Barnes is listed as a CC center and Dr. Chapman is one of the best!! (I beleive is the best!!)
Please read my story at thetelegraph.com under christmas miracle for HOPE!!
Please feel free to email or call me if you want to talk or more info. (618-567-3247).
Lots of prayers for your father-in-law and HOPE-CathyNow that I thought about it a bit more… I agree with Lainy. If your in-laws are comfortable with the hospital and the surgeon, let them live with their decision. You are too close to surgery to try any last minute changes.
Think positive and hope for the best possible outcome.
Best of luck!
Hi Stacy,
I had resection as well as intrahepatic hepaticojejunostomy Roux-en-Y last November. My surgery was done at UIC and doctor is Dr.Giulianotti and he’s a great surgeon. He is not an oncology surgeon but experienced and has done many surgeries for cancer patients.
My surgery took 10 hours and I was on my feet after 3days.
You can call Myriam 312 355 5562.
I’m very happy with result.
Wishing you and your father the best!
LeeAnnDear Stacy, where is your FIL having his surgery? While I am not a scientific person, you are right that you have to go with the decisions made. If your In Laws are that comfortable with their Doctors, that is half the battle and their decision to make and it helps that they know of someone who came before them. When Teddy was DX we were in Milwaukee visiting our kids and we had NO choice and there were only a couple of Surgeons at the time doing the Whipple and his body had gone in to a distress mode. We lucked out!!! It was an 8 hour surgery and this guy was the best. You are about to enter the twilight zone of surgery and that is enough to handle. Everyone should be thinking positive and I am sending prayers for God to come through the hands of the surgeon on Monday.
Stacy…I don’t have much to add to what Lainy and Eli already have mentioned other than that I wish the best of luck for Monday. My husband also had a resection (not a whipple) and I agree with Lainy in that the medicine given to numb parts of his body (spinal or epidural anesthesia) seemed to have really helped. In fact, my husband’s first and second day post surgery was remarkably easier than that of the other patients. Of course only the physician will be able to determine whether it is appropriate for your father in-law.
Please, keep us posted.
Hugs and love,
MarionStacy,
Here’s another issue you might want to discuss with your surgeon. The role played by pathologist who will be doing frozen section biopsies in the middle of the surgery.
This article explains how frozen section biopsy works:
http://jama.ama-assn.org/content/294/24/3200.full.pdfFrozen section biopsy is not very reliable, because the act of freezing changes the appearance of cancer cells. The pathologist can easily make a wrong call. “False positive” is not too bad… the surgeon will likely attempt to resect more tissue. “False negative” is potentially disastrous because the surgeon might stop too soon, leaving some cancer cells behind (a.k.a. positive margins).
So here’s what I would do:
Look your surgeon in the eye and ask him for a favor. Plead him to select the most experienced, skilled pathologist to work your FIL’s surgery. It is possible that your surgeon has no control over pathologist selection, or doesn’t know them well enough to select the best person. But it doesn’t hurt to ask.
FYI, my wife had a Whipple in July 2011. The pathologist who worked her surgery made a “false negative” call on the last frozen section. My wife ended up with positive margins. Not sure if another pathologist could have done a better job.
Welcome, Stacy to our amazing Family! My husband had a Whipple 6 years ago and yes it is the largest surgery to the human body, but not life threatening, just big. A lot of patience is required as it is usually a recovery that lasts 3 – 6 months. But it offers the very best chance for a good prognosis barring any METS. The surgeon will not know what is there until he sees it first hand once the surgery begins. The surgery can take from 6 – 8 hours. I was amazed the day afer surgery as when I got to the hospital they had Teddy sitting up in a chair. He was in the hospital a week and with no complications at that time he was then allowed to come home. The whole digestive system is changed and the way the patient eats changes for those months ahead as well. I remember Teddy, a chocoholic couldn’t stand anything sweet. He ate small amounts but more often and usually comfort foods that were pretty bland. They will give your FIL pain pills and probably something for digestion such as RX Prevacid. Teddy’s follow up watch was to see the ONC every 3 months with PET Scans every 6 months. He was 73 at that time and the Whipple did buy him another 5 1/2 years and that was a good thing.
Where is your FIL having the surgery? DO NOT be afraid as on this board we love the word “surgery” as it is the best option there is. I do have 2 hints for you as I had a stomach cancer myself 2 years ago and learned what I thought were 2 good hints. First of all I asked for a spinal as it numbs the whole area for 24 hours. I didn’t find it painful at all to have. Next I knew I would be having a tube to my stomach and when I first awoke I immediately asked for a bottle of Chloraseptic Throat Spray which I kept spraying so that my throat would be more comfortable with the tube. None of it is that horrible and it seems you turn around and its time for home. Again do not be afraid, it is the best thing for the CC situation. Above all, since you are the advocate be strong as the others may be leaning on you! Please keep us psoted as we truly care and if you ahve any question feel free to ask away!Hi Eli,
I had already read a lot on this site and I did approach my in-laws with my concern about the surgeon and how much experience he had doing this. Their reply was we like him and the last guy who had one is 84 and is now playing tennis. I explained the seriousness and they’re set on staying put. So I’m letting them make their decisions. *sigh*
Hi Stacy,
The surgery is next Monday, so not much time left. I will mention this anyway…
As I’m sure you know by now, Whipple is a BIG surgery. One of the biggest surgeries a person can face. Surgeon’s experience matters *a lot*. You want to have a surgeon who has done at least 100 Whipples. The more the better.
So my suggestion would be to ask your surgeon directly: how many Whipples have you done in your career? If less than 100, I would think long and hard about finding a more experienced surgeon.
Best wishes,
EliMy name is Stacy. My father in law was recently diagnosed with cholangiocarcinoma. His symptoms were loss of appetite, jaundice, extreme itching, weight loss, elevated liver enzymes and fatigue. He is scheduled for the Whipple procedure next Monday. The surgeon has said they don’t know if the cancer has spread and they will know more when they open him up. I’m scared as the whole family is. I’m kind of the advocate for them since they don’t know a lot about the medical industry. I worked for a major insurance company in claims and benefits so I’m meandering through this with them. Any advice you all can offer?
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