Newly diagnosed with pancreatic mass — What questions to ask?

It's good that you are reaching out for information. Sure wish I had known to ask questions when confronted by my scan results. I was in such shock my brain froze solid.

One place to start is PanCAN.org. In the search box enter "7 Questions to Ask About Pancreatic Cancer Treatment". There is a lot of additional info on that site, but this may help you get your thoughts organized. Do take notes during your appointment, especially if you do not have an advocate with you to help. Others may have additional information to add.

Wish you the best on your first appointment. Never be afraid to ask questions!

@blakebloom Praying for good results on your biopsy. Did they biopsy both your pancreas and your liver?

They just did a biopsy of the pancreas. Thank you for your prayers. This is hard. December 1st can’t come soon enough

Thanks so much! I appreciate the advice.

Did they do a biopsy on the liver spots, or only the pancreas?

What was my CA19-9 level at the biopsy (and on any past or more recent tests)? How often will they retest your CA19-9?

If cancer, which type (liver/pancreas) and subtype (e.g., PDAC, Acinar Cell Carcinoma, Mucinous, PNET, etc)?

Did they send out tissue for next-generation sequencing? (detailed biology and genetic tests) Can they create a Signatera circulating tumor DNA test from the tissue they have?

Can you get a germline (family hereditary) DNA test (e.g., from Invitae) asap to see which mutations you may have inherited?

Can you get a somatic (random damage, not inherited) DNA test (e.g., Guardant 360) to see if the tumor has targetable mutations, fusions, deletions, etc, and what drugs or clinical trials might be appropriate?

Is the next step a PET and/or CT and/or MRI to check for metastases?

What stage is the cancer? (Could be 1-4 on the clinical scale, "resectable / borderline resectable / non-resectable" on the surgical scale, or "TxNyMz" on the "TNM" scale)

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Your new oncologist is probably a medical oncologist, not a surgical oncologist or radiation oncologist. If it's a big practice, they might have one of each, and your medical oncologist would refer you to one as appropriate.
I don't know if your oncologist is a pancreas specialist, but that's who you want if you can find one. New patients normally just get referred to a local oncologist first, and don't realize that person might not be a specialist in pancreatic cancer. If you are getting referred anywhere for surgery (especially a Whipple procedure), you absolutely want to get it done by a very experienced surgeon at a pancreatic cancer center of excellence. Don't worry about offending anyone by asking for the referral -- it's a complicated procedure with much better outcomes at high-volume centers!

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Odds are if you do have cancer, they'll want to start you on a systemic chemotherapy first. They might be able to do the first infusion or two in your arm if they need to start right away, but the next question is whether you need to get a chemotherapy port implanted in your chest. Probably yes.

There are some surgeons who would attempt to remove the tumor right away if it has not spread, but the trend is not to, but instead to do 3-6 months of "neoadjuvant" chemo before your surgery. There is no right answer there, and a lot of debate on the topic.

If they want to start you on chemo right away, ask which regimen (which combination of drugs) it will be, how often you'll get it, how they determine if that's the best drug combo for YOU, and how often they check (with scans, CA19-9 and ctDNA tests) to see if the drugs are working. If you're not seeing improvement in the scans and CA19-9 tests within 2-3 months, you should ask if they can switch you to a different regimen.

We all wish and like to think we'll get the latest/greatest whiz-bang combination of drugs from recent clinical trials, but the sad fact is almost everyone gets one or two attempts at a "Standard of Care" treatment first, unless you're starting out at Stage 4 and being treated at a research facility. The general chemo standards of care for PDAC are usually based on Folfirinox (if you are younger and otherwise healthy) or Gemcitabine if you are older. The Folfirinox regimens produce better results statistically, but there's a minor issue possible there with selection bias (because younger/healthier people tolerate it better), but also the unknown factor of whether it's best for any particular mutations YOU have that "average" patients don't.

If you find out you will eventually be headed for surgery, there are some other questions that might be helpful to get answered in this thread: https://connect.mayoclinic.org/discussion/which-questions-should-i-ask-my-surgeon-i-think-whipple-is-likely/

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Forgot to add: Did they test your blood sugar and lipase levels at the biopsy or any other time recently? A failing pancreas is often associated with sudden-onset diabetes. I found out I was newly diabetic at the same time I learned I had cancer. Also, if you're having digestive difficulties (especially digesting fats, getting oily orange stools) you might ask if a prescription for Creon or other enzymes might be appropriate for you.

Wishing you the best in this!

@blakebloom
The waiting game is soooo stressful! I hope the holiday weekend will be a good distraction. 🥰

This is amazing! Wow! Thank you. I appreciate all of the time and thought you put into this!

Questions, so many questions to be asked! I don't think I could give even a basic list of questions. But quickly, here are some ideas...Be sure to ask your oncologist about the recommended treatment, sequence and duration. If the MD says something is or isn't recommended, ask why. Pancan is frustratingly complex, and some patients qualify for treatments that are totally contraindicated for others. (For example, I see people on this board talk about radiation therapy or surgery, but I've been told several times that those are inappropriate for me.) Get medication names so you can look them up later. Will your oncologist handle all symptom and pain control, or do you need referrals to other providers? Get that process started. In my case, my practice automatically refers patients to palliative care, which handles symptom and pain control. Get CDs of your CT/MRI scans and printouts of the radiologists' reports for your own files. The written reports should be posted to your patient portal, if your practice uses one, and you could print them at home; the CDs would have to be ordered via whatever process your imaging center uses, but it's usually pretty easy to get them. By getting these items, if you want to seek a second or third opinion, you have the full track record to share with those providers.

I take a notebook to every MD session and take notes, so I have a running record of things we've discussed. As I'm sure you've already done, start reading--anything and everything you can find. Keep a notebook and pen nearby as you read so you can write down comments and questions that occur to you. Before you go into your MD appointments, organize those questions and prioritize. You might luck out and get a really good session (my first session with my new oncologist lasted nearly an hour), or you might get 10-15 minutes max. Find out how you can send additional questions to your oncologist. Many practices have patient portals with a rudimentary message system, and perhaps you can use that to follow up on questions you couldn't get to in the meeting.

I'm sure I've left out a thousand ideas, but hopefully those few will help. Good luck! Waiting is the worst, isn't it?

So helpful! Thank you! I will take a notebook for sure. That’s an excellent suggestion! 😀

blakebloom,

I am not a medical professional, but have some experience with my sister's pancreatic cancer battle.

First - please do NOT wait on anyone or any office or any doctor - insist they provide information to you soonest. You do not need to wait until 1 December, just call them and ask to see the report from the biopsy - and, gain access to their portal to be able to review everything. Please don't wait for the appointment.

First (another) - what is/was your CA-19 number? They should have done this with even a suspicion - if they did not, then please go get this blood test soonest - don't wait, even if you have to pay for it! Please do it now.

Second - even though it may feel non-linear, determine which center of excellence you can be seen at. Call them, transfer the material they need and make arrangements to travel - don't wait. If circumstances warrant it, make arrangement to move - relocate - to that center of excellence. Care there, even oncology, is superior, and necessary.

Please let us know!