Which questions should I ask my surgeon? (I think Whipple is likely.)

Johns Hopkins Hospital is a NPF Center of Excellence for pancreatic cancer treatment, one of the best reputations in the country.

I'm going out on a limb and suggest you get the surgical consult there ASAP. Too much delay could be the difference between metastasis and resectable, and if you're off chemo too long while you shop around (like I was, apparently), you run the risk of metastasis.

The higher-volume centers of excellence not only have more experienced surgeons, but staff and post-op recovery nursing and dietary centers as well. Plus, if some complicating factor like an artery being in the way is only discovered after the surgeon opens you up, a more experienced Whipple surgeon may be able to continue while a less experienced surgeon has to abort the procedure and close you up.

A few more questions came to mind after my last post. You might also ask the surgeon:

12) How long you'll be under anesthesia

13) How long the surgery itself takes (from first cut to last stitch)

14) If they take and sample lymph nodes as a matter of course, not just if they see suspicious ones

15) How they ensure good intra-operative pathology... This is crucial. In a Whipple, they slice off some of the pancreas head, check it under a microscope for malignant cells, and then tell the surgeon whether he can stop cutting there or needs to cut off another slice and repeat the steps. This is apparently a very inexact process (as explained to me by two prominent surgeons discussing why my cancer "returned" at the original site).

16) How long they expect you to be in the hospital after surgery (ICU and regular recovery)

17) What dietary plan you'll be on while recovering in the hospital and then at home

18) If they provide you a phone number for the on-call surgery "support" team in case you have an urgent situation after you've gone home

Oh, now I think my reply was much too directive. It sounds like you are very organized and have already made some great decisions that you feel comfortable with as far as care. If you have a great doctor that you trust, I think that is wonderful. Don' t question yourself because of anything I say. I only mention things that worked for the two cancer patients I was helping. It is certainly not the only way to do things and it may not even be the best way. I hope that everything goes well for you.

I have had other people close to me get treated at other hospitals for cancer and they are doing well and were very happy with their care, by the way. Your message was not too long. I was happy to read it. I am not sure you are a person of faith, so I hope this does not offend you, but I will be praying for you.

A few more questions that popped into my head:

19) A: What do I need to do to prepare for the surgery? I was advised to gain all the weight I could, so I would have to reserve to lose from. I lost about 15 pounds after the surgery (from 175 to 160) and have been at that new weight for about a year now. I was also advised that protein helps with recovery. My diet has never been short on protein, but the fatty side of it did NOT help with recovery!

20) Q: Will it hurt? A: Probably! My surgeon preferred the open route over laparoscopic, because it improved his visibility of and access to organs, while reducing the length of the procedure. They say recovery from the open procedure is a little more painful. For me, the second day after was the worst, because the best drugs had already worn off, and Day 2 was a roller coaster of trying to adjust. I had a morphine IV that I could self-deliver (dose-limited!), but was initially reluctant to use it. After I started, things improved, but I had some weird dreams and hallucinations, and was really sensitive to room temperature. Had to have someone bring in a fan. Having a bad back already, 6 hours on the operating table followed by an uncomfortable bed in recovery, and tubes everywhere making good sleep impossible, I think half my pain was just the back/orthopedic problems. I would get a massage and do some yoga beforehand if I had to do it again.

21) Q: Will I have a urinary catheter after the procedure? A: Most likely. For long? I'm guessing 1-3 days, depending on how mobile you are. If you have prior experience with getting a catheter and have problems with or preferences for a specific type, this visit will be a good chance to make it known.

22) Q: Will I have a drain tube from my pancreas? If so, for how long? They can use this to check for various stuff (leakage, blood, enzymes, etc?). I think my hospital stay was about 6 nights, and my drain came out maybe one day before my discharge.

23) Q: What are the criteria for my discharge? They need you to be somewhat mobile and able to have a bowel movement, or pass gas at the very least, to be sure your digestive tract is not "paralyzed." Getting up and walking around the recovery floor helps get the bowels moving. Once they told me that, I started running laps around the building to get the heck out of there! 😉

@jk77 , I understand that you are alone in this, and wish you the best. My wife slept on the couch in my room every night until I was discharged, and made sure I could untangle tubes, find the nurse call button when I was disoriented, adjust room temperature/lighting, bring food/drinks, and all sorts of helpful things. I hope you're able to bring along someone as an advocate for at least a few days. The surgeon probably wouldn't know the answer, but the hospital should be able to tell you how long someone can visit or stay in your room. Also give serious thought to how you're going to feed yourself, deal with the fatigue, and transport yourself around town in those first few weeks after the surgery.

Hopkins is a top place for surgery. A personal friend who is a physician traveled to Baltimore from St. Louis, MO. Barnes Jewish in St. Louis is a top regional medical center. He had been told he was not a surgical candidate due to a single metastasis to the liver in St. Louis and had a second opinion from Dr. He at John's Hopkins. Dr. He has a national reputation. My friend did very well with his surgery at Hopkins after having neoadjuvant therapy in St. Louis. He
https://www.hopkinsmedicine.org/profiles/details/jin-he
I have a local oncologist who has given me my chemo locally and a consultant at MSKCC. I live two hours away from MSKCC and chemo would be difficult. The closest place to get chemo thru MSKCC would be an hour away. I only travel 10 minutes to my local oncologist. I want to have local doctors I can call on in an emergency. There are challenges in receiving treatment in two places but well worth the effort. Your doctors will need to be able to collaborate in your care. This is a challenge. Chemo drugs will work the same no matter where they are given, but when it comes to surgery, no substitute for a top surgeon.

Thank you so much for this advice. I've been fretting about splitting my care between two institutions, but so far I feel more comfortable with the idea of surgery at Hopkins.

I just checked pancreasfoundation(dot)org for its list of NPF Centers of Excellence for pancreatic cancer. Hopkins, of course, is on the list -- but so is my current hospital, which I didn't know. This won't stop me from meeting with a Hopkins surgeon, but this does help me feel better about where I've been getting my care, and about my sense that my onc. knows what he's doing.

Once again you've helped me! Thank you so much, and I hope you receive more than you give.

First, I apologize if I seemed to be chiding you. Not at all. Rather, I was saying indirectly, "I'm quite embarrassed about seeming so incompetent here; please know that I did manage a bit in the past, though not as well as I would have liked." I'm *deeply* grateful for everything you wrote and suggested -- your kindness is a buoy to me during a profoundly difficult time, and it mortifies me to think I gave any other impression to someone who has shown me kindness. I apologize again.

And I appreciate your praying for me. I don't know where I am with regard to faith, but I most certainly appreciate a kind person keeping me in their prayers. Blessings to you, if it's OK for me to say it that way. And thank you. Warm regards.

A million thanks, gardenlady! I hope others step up for you if you ever have questions. Take care, and best wishes to you.

There are no words to express what you've done for me (and, I hope, lots of others who didn't know what to ask but now have a great guide) -- you are a blessing, if it's OK to express it thus.

I see that there's a third installment; I won't respond separately to that one.

I regret that my words are inadequate; I can only say again that I'm immeasurably grateful, that I hope your kindness comes back to you many times over, and that I'll be looking for ways to pay it forward once I'm up and about. Thank you and take care.

Nothing to apologize
For whatsoever. I think it is just a matter of communicating in writing and not having a conversation with voice inflection. I did not perceive you to be chilling me at all. It is sure nice to be appreciated. I only come on here in hopes of helping someone now and then. Thanks for your kind words.

Thank you for letting me know that I didn't cause offense. I'm smiling at the lovely faces in your user image and wishing you well. Your kindness helps me, and I'm sure you have helped others. Thank you again, and take care.