Pancreatic Cancer Group: Introduce yourself and connect with others

I was just diagnosed with early pancreatic cancer still waiting for the next step. Mine was found by accident. It was removed and since it was cancer they now say they have to open me and do further removal. What else should i expect? The doctors are talking and will call me back in a few days.

Thank you for the information. I will ask these questions on this Tuesday when they fit me for a form for the radiation!

Thank you for the information! It's greatly appreciated!!!

Take a look at surgeon Mark Truty at Mayo Rochester. From is online bio: "He is specifically sought out given his novel approaches to preoperative treatment of these tumors in order to improve outcomes after surgery as well as his willingness and technical skillset to offer curative intent operations for patients with more advanced tumors that other surgeons have deemed inoperable due to tumor involvement of critical blood vessels."

We cannot really give advice here, but perhaps offer questions for you to pose to help make your decision.
1) is Nanoknife a possibility? Why/why not?
2)can you curb abraxane to prevent further neuropathy?
3) why 5.5 weeks of radiation vs targeted proton or SBRT?
4) Will the type of radiation they propose potentially damage other areas in the region?

I was diagnosed with stage 1B in early May of 2025. I have gone through 12 weeks of Abraxane and Gemstar chemo. My CA119-9 was at 360 in May and is now down to 80. I'm curre3ntoly being treated at Scripps in San Diego. My tumor has partially encased the blood vessels in my pancreas, so I was told I was not a surgery candidate. My oncologist now recommends 5 and 1/2 weeks of radiation with once-a-week Gemstar chemo. He said this should give me a couple years of regression and when it comes back, they would do the 5-day radiation treatment with the linear accelerator device. I'm not sure what to do but am in conversations with Mayo, UCSD, UCLA in addition to Scripps. I now have very increased neuropathy from the Abraxane and have to take Creon before every meal. I'm 75 years old and in reasonable health. Not sure what to do at this point. Any advice or input would be greatly appreciated.

I'm Jill. Like Danielle, I just received my biopsy results of "invasive adenocarcinoma, well-differentiated". The doctor who did the biopsy says it's either Stage 1 or Stage 2, more tests will be done by an oncologist to know for sure. I will be referred to OHSU (Oregon Health & Science University). I expect I will be set up for a distal pancreatectomy as soon as possible. Has anyone had this surgery with success? My primary doctor has yet to consult with me. This is all so new...
I'm also curious if anyone has found that it was IPAS (Intrapancreatic Accessory Spleen) after the surgery? IPAS is benign but mimics a tumor/adenocarcinoma and is difficult to identify.

@danianderson7 ,

Hi Dani, sorry to hear about your diagnosis.

There are some good questions and thoughts to consider in these two archived threads:
https://connect.mayoclinic.org/discussion/newly-diagnosed-questions-to-ask/
https://connect.mayoclinic.org/discussion/which-questions-should-i-ask-my-surgeon-i-think-whipple-is-likely/
There may be some overlap between the comments below and those threads, but I don't recall everything they contain, even though I posted several of them (2 years ago!) 🙁

1) Ask if enough biopsy was taken and saved to submit for NGS (Next-Generation Sequencing), i.e. genetic/DNA/IHC testing to identify any mutations, fusions, protein overexpressions, or other "alterations" that might be targetable by a customized treatment or clinical trial. Knowing this might not provide immediate benefit, but definitely will in the longer term.

2) Also get genetic testing done of your germline (inherited) mutations to help identify whether any can be targeted by customized treatment; same goal as (1).

3) Remember that this first appointment will most likely be with a MEDICAL oncologist. (SURGICAL oncologist, RADIATION oncologist, and RESEARCH oncologist / Trials Coordinator oncologist will come later.

Your first and soonest appointment with the medical oncologist is probably someone set up by referral from your primary care doc or other provider who made the diagnosis. This does not have to be your medical oncologist or institution for the long haul. Make sure you get affiliated with the best pancreatic centers of excellence you can access (insurance-wise and geography-/travel-wise). High-volume providers at these institutions have better outcomes, more resources to address related problems, and more access to clinical trials.

You will probably be pushed to start systemic, standard-of-care chemo as soon as possible. Don't let them rush you into a decision you're not comfortable with, although it doesn't hurt go get a chemo port placed if they recommend that. You'll probably need that sooner rather than later, and having it will avoid delay starting treatment wherever you decide to go.
(* "Rush" should factor in your current condition and likelihood/risk of metastasis, but hopefully not more than 3-4 weeks max.)

Wishing you the best!

Danielle, I'm sorry to hear about your results. I was in your situation late April 2025. I highly recommend you gather as big of a support system around you as you can. If you're religious get everyone you know to pray for you and your family for peace of mind.

Try to always bring someone with you to your appointments. There is so much coming at you and having another person you trust listening to the doctors helps enormously to remember what was said.

Before you start treatments, find out about and consider getting into Clinical trials. Sometimes they won't accept after starting other treatments. Your oncologist should have resources available about clinical trials.
tricanhealth.com - clinical trial site a bit easier than the .gov site
clinicaltrials.gov - the main government database of clinical trials

pancan.org is another good website with Pancreatic cancer info in addition to the Mayo sites.

Most importantly keep a positive attitude that you can beat this.

I'll be praying for you.
Marty

Hi I'm Danielle, just had a biopsy on 9/2 the results came back positive for adenocarcinoma yesterday. Waiting for an appointment to meet with the Oncologist. Does anyone have any advice?