Pancreatic Cancer Group: Introduce yourself and connect with others

mmatunis,

A very good point - there are medical reasons, as you noted, to not perform Whipple laparoscopically, and given your experience was at JH, I would be comfortable with that decision.

I had an open Whipple surgery 12 weeks ago and am finally able to say that I feel pretty good. The road to recovery was slow for the first 5 weeks and then things gradually started getting better from week to week. Going in to it, I was most concerned about recovering my appetite and not losing weight post-surgery. Fortunately, I was able to eat fairly well one week after surgery and never had any major gastrointestinal issues. The main issue was pain and discomfort from the incision and itchy sensitive skin around the incision. It just took time for this to heal.

I had my surgery done at Johns Hopkins and my surgeon has considerable experience doing robotic Whipple procedures. I was expecting/hoping for a robotic surgery, but plans changed at the last minute due to some unexpected pancreatitis-related issues I had leading up to the surgery. My tumor was also in close proximity to blood vessels, which complicated things. Having been through an open surgery and the experience of dealing with the incision, I feel that recovery from a robotic procedure has got to be a lot easier to deal with. But whether this is an option will depend on where you are and your specific circumstances.

marviak9,

The usual reason for not doing Whipples laparoscopically is the lack of training of the surgical team, and the lack of sufficiently advanced surgical theater and equipment.

While the survival rates are close to the same, reportedly, the post operative infection rates are better with laparoscopic approach.

Please consider going to a major pancreatic cancer center.

My surgeon says not laparoscopic or robotic. He said he will do it the old fashioned way. A cut from the bottom of my ribs to my belly button! I have heard they can do it laparoscopic but my surgeon won’t. It could be because my tumor is sitting on a major blood vessel.

Would like to know too . Following ♥️🙏

I wish you the best. The whipple scares me to death but maybe it’s the only hope. Curious if you could share any information about a Mayo Clinic whipple. Would it be done laparoscopically and perhaps even robotically? What did they tell you about surgical complications and what a post whipple surgery recovery/life would be like. Thanks.

This is exactly what I went through last October. My oncologist recommended 12 rounds of chemo. Then the surgeon at Mayo wants 3weeks of radiation. Then the Whipple. But I guess every person has a different diagnosis. My tumor is on the head of my pancreas and is sitting on a major blood vessel so they really want to shrink the tumor as much as possible before surgery. The surgeon says once you do the Whipple there’s no do over. He’s got to make sure he gets it all with good margins.

Has your PC been staged?

Where is it specifically located? This is important ... it sounds as if, given the biliary stent, that it is pressing on the bile duct?

You should review this - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8469083/ - and as many more recent papers and analyses, as possible.

What are your CA 19-9 cancer marker numbers?

My sense is that you may not have read enough to ask the questions - and, demand answers. And, since you are at a local hospital, you may be getting a standards of care approach. This is, in my mind, NOT sufficient for pancreatic cancer.

I can only say - if it were me, I would be on the phone with Anderson, Mayo, Kettering, etc - TOMORROW - and immediately travel to your choice - frankly, whoever can see you IMMEDIATELY. Please don't wait!

I'm surely no expert, as I'm just beginning my PC journey, and I don't qualify for the Whipple procedure. But I wanted to say I can relate to the energy and appetite issue. I haven't lost much weight, maybe 2-3 pounds, but the last few evenings I haven't mustered up the interest in a "real" dinner, opting instead for peanut butter toast and milk. Are you working with a palliative care MD? Mine has prescribed dronabinol to be taken before breakfast and dinner when I feel like I need it. I haven't yet wrested it out of the pharmacy, but I'm hoping it'll help with the dinner blahs. We're also relying heavily on easy-fix meals and frozen entrees, and we've shifted some heavier meals toward lunch, when I do feel more like eating. I've also begun drinking ginger ale (sweetened, not sugar-free) because it tastes good and gets more calories and fluid in me. Basically, I'm focusing primarily on calorie intake. Play to what sounds good in the moment and go for that.

Yes, I need to have someone tell me why I am not being monitored and possibly getting chemo during this period between my release from the hospital and my date for whipple surgery. This is my local hospital and I was told that my whipple would be open with a 5” incision. Was told that they would know about the need for chemo after the surgery. 30% chance I would become a type 1 diabetic and 10% to 15% chances of bleeding, organ damage, or leaky connections after rerouting my insides. Six month recovery where I would lose 20 lbs. thanks for your initial reply.