Seeking input re: questions to ask my oncologist 5 weeks post-Whipple
Hello, and thanks for helping me. I know that this is a lot to read thru, and if you don't feel like it, I get that!
Below are questions I know to ask based on my circs and based on various posts I've read on this site. I suspect that my list is incomplete, so I'd appreciate additional ideas.
— Notes from the CT taken 3 weeks pre-surgery include: "Decrease in caliber of the pancreatic duct and decrease in pancreatic head enlargement. A discrete mass is difficult to identify." —–> Does this mean that the tumor shrank, and if yes, does that mean anything (either positive or negative) with regard to my prognosis?
— I don't see the pathology report (or surgeon's post-Whipple notes) in my online documentation, so I don't know whether there were complications with the surgery, such as vascular involvement (which is hinted at in the Sept. CT notes). If yes, how will that affect the next step of treatment (e.g., IV chemo vs oral chemo)?
— Were the margins of the tumor clear?
— How bad or good is it that one lymph node was involved? (That is, only one seems good-ish — but not zero seems bad-ish.) Does this mean that cancer cells have traveled, or probably have traveled, thruout my lymphatic system and will cause, or have already caused, metastases?
_______ Does the location of that lymph node matter with regard to the probability of metastasis? If yes, where was it?
_______ Do you think that, as of today, the cancer has metastasized? If yes, what do you base that on?
_______ If you think it has spread, could I have a PET scan? (I'm concerned about the possibility of colon cancer and ovarian cancer because my earliest symptoms were back pain and changes to my bowel habits.) Or, does my insurance prohibit a PET scan? (If my insurance prohibits that but you think a PET scan wd be beneficial, do you know of any funding options? Might the social worker, or might someone else?)
_______ What does the Sept. CT tell you about my lung nodules? (The CT notes state: "Lower chest: … The lung bases are clear" ) [Note to Mayo readers: CT in July showed no change in the nodules, which suggested that they weren't cancerous, but I think it's wise to ask just in case.]
— [Note to Mayo readers: I had asked my onc. to withhold info about my stage until after surgery, plus there was some ambiguity bc of the lung nodules.] Given that my tumor was initially a little bigger than 2cm x 2cm, would that have made me stage 1b (per the NCI webpage) at the time of diagnosis?
_______ OR, is it impossible to assign that stage bc you can't know whether the cancer had already spread when it was 1st detected and measured?
_______ OR, is it likely that I was 2b upon diagnosis (in Feb. 2023), given that surgery (in Oct. 2023) showed it had spread to one lymph node?
_______ OR, do you think I was an even higher stage when diagnosis and early imaging were done, in Feb-March 2023? If yes, what is the basis for that assessment?
_____ What stage am I now?
— One of the knowledgeable posters on the Mayo board wrote that in his case, "Post-op analysis of the tumor rated treatment as a 'partial response' (2 on a scale from 1-3)." Do I have such a rating, and what is it? And, what does it mean with regard to my prognosis?
— With regard to post-surgical treatment: I think my surgeon told me that the pathologist said (during a weekly departmental conference about patients) that my tumor had "live" (cancerous) tissue. If so, does this mean that Folfirinox wasn't as effective for me as it is for others?
_______ OR, might this reflect that I had 8 rounds of Fol rather than 12?
______ But if Fol is less effective for me, then will my next chemo regimen be gemcitibine + abraxane? Or something else? (What?)
_______ Would it be beneficial to find out my genetic mutation in order to determine which chemo would be best for me? Or, is my insurance refusing to pay for such a test?
Thanks, board members (!), for wading thru this, and best wishes.