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

jk77,

You sound smart and brave ... thus forum and the kind people here will be helpful.

I can only offer an opinion: you want to optimize your treatment; one way is to ensure you go to a center of excellence for pancreatic cancer. One way to tell is to ask if the surgery can be done laparoscopically. Lap surgery is not always the right answer, but if you are at a center of excellence they are able to do lap Whipples.

I am so sorry you have to face so much of this by yourself. Are you being treated at Mayo Clinic? If not, I hope you have great doctors that really listen and answer your questions. I have been at every appointment with my mother and my husband when they had cancer and I did their research and organized their questions. If you have the energy, something that really helped me was to put all of the questions for the doctor in a list in my phone as I thought of them (and as the patient thought of them). That way, we did not forget anything. I have found that you don't have to worry too much about taking notes because most things show up in the patient portal and you can read them later if you want to.

Assuming that you have great doctors like my husband does, my observation is that you don't have to worry about asking too many questions because they have you covered like a highly educated, caring, warm, cozy blanket. I would encourage you to ask any question you want to ask and not consider any of them silly or unimportant. Most doctors we have interacted with have very patiently answered questions and I have been surprised by the completeness and transparency of their answers. It seems like most great doctors have moved away from the days when you were just supposed to trust them and not ask anything.

I agree with the user above, mayoconnectuser1. Be sure you are being treated somewhere that is top ranked in your type of cancer. You would like to have the latest knowledge at your disposal. I know I said this before, but I think that having doctors that are experts in your cancer can remove the need to advocate for yourself. I really hope that all goes well for you.

Lots of questions. Best to write them down in advance. Ask doc if you can record the session on your phone. You almost always get your longest, most informative session at your first appointment, and get so wrapped up it's hard to simultaneously write down the answers.

Sample questions, not all in logical order:

0) How many Whipple procedures does this surgeon perform each year? PanCan.org can help answer that question. There is a ton of data out there showing better outcomes with experienced surgeons at high-volume centers. That also includes the OR staff and recovery center.

1) Will they be doing one last CT/MRI shortly before the surgery just to get a current picture of the anatomy (vein/artery involvement), and possible spread to lymph nodes or elsewhere?

2) Will they do it open, or laparascopically, with or without robot assistance?

3) Will they start with a "diagnostic laparoscopy" where they first just go in through a few tiny holes and look for other metastases? I think this is a normal protocol. If they find a lot of other bad stuff they didn't see on MRI, they may abort early and not perform the Whipple, so as to not put you through unnecessary agony.

4) If they do find other unfavorable spread, what is their threshold for aborting the Whipple? How much else can they find and successfully address without aborting?

5) If they do the full Whipple, can they send you home with a prescription for Creon or other enzymes, so you don't have to endure weeks of digestive discomfort waiting for your 1-month follow-up visit?

6) If they do the full Whipple, will they preserve enough tissue to send out for multiple analyses, including sequencing for a Signatera (DNA) test that they can use during follow-up to look at microscopic levels whether your cancer is returning?

7) Do they plan on a "pylorus preserving" Whipple? (saving the pylorus valve below your stomach)

8) I'm not sure if you have any specific genetic mutations that predisposed you to pancreatic cancer, but if you do... What are the chances the part of your pancreas that remains after surgery will also turn malignant later in life? If that is likely, is it worth taking out your entire pancreas instead of just the head?

9) If you are not already insulin-dependent diabetic, you might become insulin-dependent after the surgery. Ask if there is a possibility of them harvesting islet cells from your pancreas and transplanting them into your liver to reduce or avoid the diabetic outcome.

10) How often will they follow up after surgery with CA19-9, Signatera, and imaging?

11) Is there a plan for "adjuvant" chemo (after the surgery) regardless of the pathology report? If so, which regimen, and starting when?

I hope this is a good start, and wish you the best with it all!

Thank you for all the information. I learned so much about questions to ask. Wonderfully helpful. Thank you.

To markymark's last point -

"11) Is there a plan for "adjuvant" chemo (after the surgery) regardless of the pathology report? If so, which regimen, and starting when?"

IMO I would advocate for as much chemo as I could possibly live through - this isn't always possible due to other factors, but if possible, do it.

Thank you very much for your helpful and kind reply. I wish you well.

You're a rock star!

Thank you so much -- this is indescribably helpful. Truly I had NO idea what to ask, and you've filled a huge gap. Thank you for giving me so much time and help; I hope what you give comes back to you many times over.

Thank you for this. My onc. said that oral chemo might be called for after surgery.

If I had to do Folfirinox (infusion) again, I would, but with trepidation; I was lucky in that I tolerated my 1st five infusions pretty well, but 6 and 7 were tough, and 8 has been in another universe altogether.

Thank you so much for weighing in -- I'm very grateful, and I wish you well.

Thank you so much for your reply. I've always brought my laptop, with a typed list of questions, to every appt. with my onc., and I type his replies (and also record the appt.). Will continue to do so, and thanks.

I'm being treated at a hospital that isn't nationally recognized in any discipline, and this makes me nervous with regard to surgery. (My diagnosis came out of nowhere, after some intense itching and jaundice prompted an ER visit, and I ended up at this hospital bc my primary-care physician was here.) My onc. has good educational credentials and has been practicing for about 20 years; he's smart, and I trust him, not least bc he has pushed for me to get surgery despite an early indication that my cancer night be metastatic (which would lead him to give me palliative care only).

I live close enough to Hopkins Hospital to be treated there, but I don't want to leave my onc. (or the social worker who has helped me with some related financial woes). I plan to meet with a Hopkins surgeon as well, and I plan to ask my onc., whom I'll see two days after I see the surgeon, whether my having the surgery at Hopkins but having all of my my post-surgery and post-surgical-recovery care back at the non-Hopkins hospital would jeopardize my relationship with him or with the non-Hopkins hospital.

I probably should have gone to Hopkins as soon as I had the diagnosis, but there was a giant logistical complication related to getting a referral to an onc. (don't ask) on top of the general overwhelming-ness of "Hey, your current symptoms aren't something chronic / manageable -- they're cancer, maybe metastatic!" So I passively threw myself on the mercy of a patient advocate at my former PCP's hospital (the non-Hopkins one) bc I didn't know what else to do.

Sorry if this is waaay too long, and thank you very much for your time, help, and kindness. Take care.

jk77,

IMO you should immediately consult with staff at Hopkins ... I don't know if they are considered a center of excellence for PC, but you can inquire if they do Whipple surgeries laparoscopically - if they do, they probably are, if they do not, they may not be.

Please reconsider that your life may depend on which choice you make. I believe your oncologist will understand if you go to a center of excellence.