Where is best place to go for second opinion for stage 4 pancreatic?

I would absolutely go for a second opinion. You say that your scans show no disease progression, but that may not be true. In my case, I was told by my oncologists that I have at least one very flat lesion outside my pancreas, which made me a Stage 4 case. The flat lesions do not show up on CT scans, they told me. Indeed, in my scan (without and then with contrast) in September, my liver and spleen were listed as "unremarkable," which means the radiologist couldn't see anything, but it doesn't mean nothing is present. It's worth asking for sure.

@wheatley, I think you can guess where I am going to suggest for a second opinion. You can read more about Mayo's expertise and excellent care here:
- Pancreatic Cancer care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/care-at-mayo-clinic/mac-20355431

If you would like to inquire about a second opinion at Mayo Clinic, you can get started here: http://mayocl.in/1mtmR63

@wheatley ,

I would say the best place is whichever pancreatic center of excellence you can get into first. Think Mayo, Anderson, Sloan, Farber, Hopkins, and the like... Plenty more listed on the National Pancreas Foundation site, possibly closer to you and with easier scheduling.

Have you had any scans at all since April 2023? If not, you're definitely overdue for that.

Can your current oncologist order an appropriate ctDNA test to help gain insight that might correlate or refute your CA19-9 tests?

If your first FILFORX + (plus SBRT) didn't completely kill your original cancer, I (with no medical training) doubt FILFORX without the oxaliplatin and SBRT is going to do much. *Maybe* time to switch it up and see if one of the alternatives like Gemzar/Abraxane/Cisplatin would be right for you?

If nothing else, you might want to start looking into clinical trials. If you haven't already had germline genetic testing for inherited mutations done, you should ask your oncologist to schedule that for you. Whatever you know about your own genetics can help identify the best treatment for you.

My non medical professional opinion is that you need to immediately restart chemo while scheduling for a center if excellence consult.

The tumor was not resected?

I would also suggest you plan to relocate to the area of the center, assuming you don't live near one - IMO, ALL the care you receive there is superior to what you will receive at a local hospital. While difficult, this could make the difference.

Thanks for your response. No, tumor was not resected

If I was was going for a second opinion I would choose Mayo Rochester……Mother Mayo”. The flagship, an incredible place.

Wondering where you are currently being treated??

Massey cancer center Richmond va

I keep hearing that if you switch to another chemo treatment that will eliminate you from a lot of clinical trials. Any thoughts on that? Thank you.

I see that Massey Cancer Center is an NCI comprehensive cancer center, but isn't listed on the National Pancreas Foundation centers list as a pancreatic cancer center of excellence. UVA is listed, however. You might check these lists and see whether any other center offers more in your specific situation.

I'd like to add that not everyone can relocate to get medical treatment, and I get that. There are so many financial and logistical considerations, including job obligations, family finances, insurance coverage, etc. In my case, moving out of state could jeopardize our sons' college scholarships. However, there may be a way to do some medical travel--for example, driving an hour or two to get to appointments etc., staying in a hotel overnight as needed. We've done that in other instances (for example, my spouse's prostate cancer surgery and our son's clubfoot treatment), and while it's not inexpensive, it may be easier than moving altogether. Anyway, take a look at the lists and see whether it's worth trying to figure something out. If you absolutely can't leave Richmond, make a point to do a lot of research, ask a lot of questions, and advocate for yourself. Take advantage of every resource you can find.