Seeking input re: questions to ask my oncologist 5 weeks post-Whipple

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.

Your 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.

I 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

It'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

It'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

It'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

I 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.