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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.
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Quite a thorough list of questions! Good work on that. I really can't speak to most of them, since I was never a candidate for surgery. However, this one caught my eye: "Would it be beneficial to find out my genetic mutation in order to determine which chemo would be best for me?" Does this mean that you already know you have a genetic mutation, but you don't have enough info on it? Or does it mean you want genetic testing in order to determine whether you might have a mutation that could influence therapy? I wasn't sure. Not every cancer is due to a genetic mutation, but confirming or ruling that out could be very helpful, so I would definitely ask.
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2 ReactionsYour post is very helpful -- thank you!
I am, unfortunately, very ignorant about this disease (and I haven't yet figured out how to get the overview that I need, though reading this board has filled in a lot of gaps), so I *didn't* know that not every cancer is due to a genetic mutation. I had assumed, based on what I've read on this board (and semi-misunderstood) that all are caused by a mutation, and I had inferred that knowing the mutation would help an onc. determine which chemo regimen would be most effective.
Thank you again, and wishing you well.
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1 ReactionYou're right--knowing the mutation, if one exists, can absolutely help the oncologist direct therapy. If you haven't discussed it with your oncologist, there's no harm in asking about genetic testing. If you get that done, then you'd know for sure one way or the other, and your oncologist would have that info to help direct therapy. (And please don't apologize for not knowing about pancan! I know sooooo little myself. It's confusing and daunting and really complex. I see why MDs specialize in it; it would take an entire career to begin to understand it.)
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2 ReactionsI am not a doctor but my boyfriend had pancreatic cancer they were going to do the Whipple surgery but he let his insurance go for some reason and we had a wait to whole year and it was too late so get everything done that you need to get done and then go worry about everything else to have it so just get the surgery done and then worry about everything else that goes with it cuz they be able to tell once they in there and do the surgery and if you already done chemotherapy and stuff that's perfect but just be positive about everything. let me know what happens thank you Debbie
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2 ReactionsThank you for your kindness and your concern. I'm so sorry that your boyfriend had this experience (and that you suffered too, as someone who cared about him). It's obscene that the US ***still*** doesn't have universal coverage. (I was without insurance for many years, including 2020, when my symptoms began.)
Take care.
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1 ReactionIt's somewhat academic, but you might be interested to know and document exactly where they staged you on the "(p)TNM" scale. (p) means "pathological" as compared to (c) "clinical" -- meaning they actually measured stuff during and after surgery.
For pancreatic cancer, the "T" generally means tumor size; "N" refers to the number of positive lymph nodes; and "M" refers to evidence of metastasis beyond regional lymph nodes. So it _might_ have been T2N1M0, but don't quote me on that. (I'm not sure they even include the "M" score if they don't find mets, because it implies nothing is there, and absence of evidence is not evidence of absence.)
For monitoring, you should ask if they saved enough tissue and sent it out for a ctDNA (circulating tumor DNA) based test like Signatera for "MRD" (Minimal/Microscopic Residual Disease) detection. They can use this (along with imaging and CA19-9) to monitor your blood for recurrence/spread/growth during and after your treatment.
I would also ask if they saved enough tissue to do sensitivity testing for you before you start chemo. They could (theoretically) subject your extracted tissue to various chemo regimens in a test tube (or maybe in mice) to see which ones produce the best response. That would be nice to know. ( @colleenyoung posted a link recently to an article about Dr. Mark Truty at Mayo / Rochester doing tissue transplants into mice for that kind of study.)
For DNA testing, you should have had two types: 1) Germline (hereditary) testing to see what you inherited from your parents, and 2) Somatic (environmental damage) to see if the tumor itself has any specific mutations that may be targetable.
The test from Invitae is an example of a germline test, and the Guardant 360 is one example of a somatic test.
I'm no biologist or geneticist, that's for sure, but I _think_ if you have a germline mutation (which may increase your risk of certain cancers) that it should also show up in your tumor somatic tests, because every cell in your body started with the DNA you inherited from your parents. Your tumor should have that mutation and possibly more. e.g., Guardant detected my ATM mutation, but couldn't confirm whether is was somatic or germline. But since Invitae had already identified it as germline, that question was answered.
As far as other mutations go, I'm probably splitting hairs here, but "Not every cancer is due to a genetic mutation" _might_ be a bit broad. Definitely not due to a family-inherited mutation, but environmental damage or other random chance (replication error) _might_ cause a mutation that gains a foothold and takes off. If the cells didn't have some abnormality that causes them to replicate out of control and/or be less likely to die, then they wouldn't take over the jungle, so to speak.
I'm vaguely aware of two mutation types that allow cancer to grow out of control 1) "tumorigenic" -- where the mutation causes uncontrolled growth; and 2) "tumor-suppressive" -- where something fails to detect and attack tumors. I would guess there are "numerous" mutations which could exist and not yet be known. Genetic testing can only look for what it knows exists, and the commercially available tests are basically just looking for the most common ones associated with cancer, and sometimes just the subset of known targetable mutations.
I'm not sure if radiation is in your future, but ask... some bowel tissues that are too sensitive to be radiated without damage. There are other radiation options, such as brachytherapy -- where they implant a radioactive pellet as close to the tumor as possible, rather than exposing you to a beam from outside your body. The "Civa Sheet" is one example of a newer version of that. It includes a gold "shield" backing to prevent the pellet's radiation from going out in all directions, directing all the energy inward to the tumor it's placed against. I saw one video of it being used at a center in Virginia, so maybe within your reach.
Hoping and praying it all goes well for you!
--mm
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5 Reactions@markymarkfl , you explained the genetic mutation thing better than I did. There are indeed many factors that may cause cancer, such as the environmental things you mentioned (chemicals, pollution, etc.), dietary choices, obesity, alcohol consumption and so on. We're still learning about a lot of these things and how they affect the human body, and trying to track them down could be really difficult. Plus, what good would it do you to realize you caused your own cancer by, say, eating too much chocolate or whatever decades ago? (I picked chocolate for my goofy example because I'm definitely a chocoholic!) For those of us dealing with cancer, that's guilt inducing and not especially helpful. You're right when you say that genetic testing can look for only the things it's programmed to look for, and I think that's what I intended to convey in my earlier post. We talk a lot on this board about our BRCA or ATM or KRAS mutations, which might lead someone to think that all pancan is due to an identifiable genetic mutation. Having said all that, I do think, though, that there are idiopathic cases of cancer, ones in which a causal factor just can't be identified--at least not yet.
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5 Reactions@markymarkfl : As is always the case, we're all better off because you've shared your considerable knowledge / expertise. Thank you so much!
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5 ReactionsI had the radioactive treatment inserted directly into my liver cluster. It was termed a Y-90 procedure. Very successful in 8/2022. Pushed the cluster to 95% or more necrosis and allowed resection of a large part of my liver 2/2023. It is done by specially trained Radiologists. That segment of liver has completely grown back healthy.
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4 Reactions@gamaryanne , did you have any evidence of mets elsewhere when they did the Y-90? I've been told I have too many for this kind of treatment. I guess this is another one of those things you can only do if you catch it early.
@ncteacher , I'm with you on the chocolate! I'm developing more superstitious rituals than a major league baseball player. I've noticed the pattern over 21 chemo treatments that my CA19-9 is more likely to go down each time if I 1) get a massage 1-2 days after chemo; 2) don't skip church; 3) eat more dark chocolate. #3 is a tough balancing act with the diabetes, but a price I'm willing to pay. 😉
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