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

Posted by jk77 @jk77, Aug 11, 2023

Hello and thanks. I had my 8th (of 8) Folfirinox infusions last week and will soon meet with my surgeon. I have no idea what to ask.

When my oncologist told me a month ago that he was referring me to a surgeon, I asked, "Will I be having a Whipple?" and he said yes.

I've been an inadequate advocate for myself bc I've found all of this overwhelming, and the overwhelmingness has been amplified bc I'm alone -- no spouse or partner and no family, and although I have some dear friends, none are nearby. So I'm at a loss.

I know that my tumor is in the head of my pancreas; that it measures about 2.1cm x 2.5cm; that my CA19-9 was 387 to start with and had dropped to 109 at the start of the 8th infusion; and that's about all I know.

I've been so worn out lately that I haven't done any research; I apologize for shifting the burden, and I'm very grateful to anyone who can help. Also, I apologize for not thanking anyone who was kind enough to reply to my earlier questions/comments -- I've had a very bad 5 weeks (cumulative effects of chemo). Thank you all, and take care.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

One other question the doctor that I forgot to list:

24) Is there anything you can think of that I should know, but forgot to ask?

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Ask about recovery and set up people or agency to check on you. Or could you be discharged to assisted living? Any other services besides being home by yourself?

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I am at the same point in life as you. Whipple is in my future. "The 9 things you should know" is a good start. And, like you, I can't think of a good follow-up question to the doc's first answer to my question. I have come up with one. It's untested but I'm going to give it a try: "Why do you say that?" or "tell me more about that." My surgeon is a little bit more open than yours, but there's still more I need to know. We need to be better self-advocates.

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I am also alone, but feel fortunate to have friends nearby. Minister and therapist, zoom contacts have helped keep me going. Your cancer center might have some resources to offer. I have found the recovery from surgery has been a difficult time to be alone. On chemo I got out a little intermittently. People might not be aware of how much the phone calls, text messages, and cards can be. I hope you will be able to find some sources of support.

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@lvtexas

Ask about recovery and set up people or agency to check on you. Or could you be discharged to assisted living? Any other services besides being home by yourself?

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Thanks for putting this in the thread -- very helpful. My oncologist mentioned it in passing, as did a surgical liaison whom I spoke with briefly and whom I'll speak with again c. 9-6-23 (after I've read the materials she sent me).

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@gardenlady1116

I am also alone, but feel fortunate to have friends nearby. Minister and therapist, zoom contacts have helped keep me going. Your cancer center might have some resources to offer. I have found the recovery from surgery has been a difficult time to be alone. On chemo I got out a little intermittently. People might not be aware of how much the phone calls, text messages, and cards can be. I hope you will be able to find some sources of support.

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This is very helpful. Thank you!

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If you have been referred to a surgeon, be SURE they have done 100s of these. Seriously. You need a liver and pancreas specialist that states that clearly. Not just a GI person.
Doing chemo remotely from centers of experience and excellence is one thing, but surgery is entirely different.

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@gamaryanne

If you have been referred to a surgeon, be SURE they have done 100s of these. Seriously. You need a liver and pancreas specialist that states that clearly. Not just a GI person.
Doing chemo remotely from centers of experience and excellence is one thing, but surgery is entirely different.

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Thank you for this. I'll be operated on by a heptobiliary surgeon who works out of a center of excellence (my onc. is at the same facility).

I had planned to consult with a Hopkins surgeon as well (I would have preferred to get my surgery from him), but the scheduling office told me that there would be a big delay (12-18 weeks) bc of insurance incompatibility. Ironic that I've stayed in my current location in part bc of proximity to Hopkins -- but I can't access care there!

I didn't ask "my" surgeon how many of these procedures he has done, but I'll now call PanCan or the NPF for some info -- thank you for reminding me, and a shout-out to @markymarkfl, who also underscored the importance of getting that info. Best wishes to you.

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