Suggestions needed re questions to cover in upcoming appointment

Posted by ajh5285 @ajh5285, Mar 8, 2023

Background: now 74-year old female with "inoperable" pancreatic adenocarcinoma diagnosed end of September 2022; many details about the earliest days after diagnosis are lost in the mists of time; now receiving gemcitabine and abraxane chemotherapy at a reduced dosage and lengthened interval because of "elderly bone marrow." From discussions on this group, I have gained the impression that it is a good idea to seek a 2nd or maybe even a 3rd opinion about treatment, preferably from a "center of excellence" which my (university) hospital is not.
I suddenly have been given an appointment for 2 days from now to see a new oncologist on staff who specializes in what I have and claims to take a more integrative approach to treatment than I have observed to date in my care.
What are some suggestions for questions based on your experience and considering that I don't know how long we will have; he apparently has a very full schedule already and my husband is guessing we may have only a half hour. I want to try to refrain from just complaining about why didn't my oncologist warn me about what seems to be a fairly regular complication of Chemo Brain or Chemo Hand Foot syndrome? why did I have to learn about it as well as possible preventive actions from the nursing staff? etc
How many think it is worthwhile to take the time for a PE (physical exam)?
As a retired physician I do plan to review whatever pathology reports I can reach through MyChart as part of my own preparation...

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

Agree that you should avoid taking up time with problems with the prior treatment, just move along from where you are. An exam by your personal physician couldn't hurt as long as it doesn't delay your consultation. Most important at this point to know what your options are, risks and benefits of treatment recommendations. Highly recommend you have your own records with you. Good luck with your consultation.

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Thanks for the advice. I'm still mulling over the conversation I had yesterday.
I do hope to be able to do at least one useful thing resulting from many of the comments here as well as this particular appointment.

There seems to be a wealth of knowledge about how patients navigate these difficult treatment straits, which now seem to find a repository only in what our oncology nursing staff hear and remember. This potentially helpful information currently seems to reach patients who look for answers and hints of answers elsewhere. I can't help thinking that making this wisdom available routinely in the local setting, would be helpful. The best example I can think of is that I learned about "Chemo Brain" and Chemo Feet and Hands" from one of the Infusion Center nurses; it was not mentioned by my oncologist.

I'd like to propose some way of preserving this experience through a semi-formal mechanism that could be made available to new patients. I have in mind two individuals who might be helpful to move such a project through the local system. One is a nurse who wrote for a grant to help provide headphones for the TVs in each infusion cubicle, so that other patients wouldn't be aggravated and the nursing staff could hear themselves think and manage the phones! The other individual, if a physician champion would be helpful, is a colleague of decades standing, who I know has a good heart.

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@ajh5285

Thanks for the advice. I'm still mulling over the conversation I had yesterday.
I do hope to be able to do at least one useful thing resulting from many of the comments here as well as this particular appointment.

There seems to be a wealth of knowledge about how patients navigate these difficult treatment straits, which now seem to find a repository only in what our oncology nursing staff hear and remember. This potentially helpful information currently seems to reach patients who look for answers and hints of answers elsewhere. I can't help thinking that making this wisdom available routinely in the local setting, would be helpful. The best example I can think of is that I learned about "Chemo Brain" and Chemo Feet and Hands" from one of the Infusion Center nurses; it was not mentioned by my oncologist.

I'd like to propose some way of preserving this experience through a semi-formal mechanism that could be made available to new patients. I have in mind two individuals who might be helpful to move such a project through the local system. One is a nurse who wrote for a grant to help provide headphones for the TVs in each infusion cubicle, so that other patients wouldn't be aggravated and the nursing staff could hear themselves think and manage the phones! The other individual, if a physician champion would be helpful, is a colleague of decades standing, who I know has a good heart.

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I am grateful to those with the good hearts who are helping me. It's wonderful that you have a colleague of decades. The internet is an amazing place, making resources available that could never be done locally

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I strongly suggest, with the doctor's permission of course, recording every important doctor session on your phone. I use a free, easy to use one called "Easy Voice Recorder". This has been incredibly value for remembering all the options and nuances of every part of the discussion with the doctor. We also prepare our questions in advance in writing. The recording allows us to listen and reference out questions without having to take notes on answers. We have found this very helpful throughout the journey . No doctor has said "no" or been offended.

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Agreed. Definitely record your Dr visits! There is so much info it can be overwhelming & impossible to absorb it or remember all.

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Which university hospital are you at?

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