Recently Diagnosed with Stage IV Adenocarcinoma

Please read my response to Annette who posted something similar to you.

Get a SECOND opinion!! I was diagnosed Stage IV 11/2021. I have been through two types of chemo, 3 surgeries, and now on a clinical trial. There are options.

Pancan.org can give you a list of NCI Pancreas designated institutions around the country. These are places you must visit - at least 2! I visited 3 to make my decisions. When I was diagnosed I had MULTIPLE tumors in my liver, in different lobes. Don't give up!!!

Thank you. I looked at your response and appreciate your comments. I am starting with Chemo on Monday and I am encouraged by your comments. I will be meeting with my Oncologist at Mayo on Tuesday; hopefully, she will have some additional guidance for me. I have a relative who is on the board of the Lustgarten Foundation and will follow up with them as well.
I am not going to give up and I appreciate your encouragement not to do so. I have had so many emotions the last two weeks since my diagnosis. It helps to hear about someone who is successfully managing their cancer. Sending you prayers for continued success and health.

Read posts by @stageivsurvivor and @mnewland99 . Their stories are inspiring and encouraging. And as many have said, get a second opinion on surgery. Strange that if it is a small nodule they will not operate. Like some have said, be your own advocate - don't take text book answers that because the cancer has metastasised, there is no point in operating on the tumour. If doctors are recommending chemo first, that could be a good thing but also get a second opinion.

Disclaimer: I have zero medical training. I'm just a patient who has been stage-4 for a little over two years post-Whipple. (I was stage-2 when diagnosed and Whippled. My cancer came back 4 months after surgery.) Similar to you, I felt very defeated: the cancer looked like Stage-2 when it recurred, but when I got a second opinion, new scans found a met that ruled me out as a surgery candidate. I've been on chemo and clinical trials ever since.

There is a category called "oligometastatic" cancer. It means "limited spread."
https://www.uchicagomedicine.org/cancer/types-treatments/limited-metastatic-cancer-program/understanding-metastatic-cancer-and-oligometastatic-cancer
There are some surgeons/centers willing to work with this. I think Mayo in Rochester has an ongoing clinical trial for HIPEC when there is limited spread.

You could also check in with Dr. Christopher Wolfgang at NYU/Langone about histotripsy procedures. They are using this non-invasive treatment to attack tumors on the liver (possibly in conjunction with chemo) to get patients to an operable state for their pancreas cancer:
https://nyulangone.org/news/nyu-langone-cancer-specialists-use-pioneering-histotripsy-technology-noninvasively-treat-liver-tumors

Can you share which centers you visited and where you ultimately received treatment from? My mother was recently diagnosed with stage 4 pancreatic cancer and we are going to UCSD but we feel everything is moving at a snails pace, which is terrifying as we feel the tumor is just growing. She has liver mets and likely lung as well (nodules not biopsied).

We want to get second opinions elsewhere but also worry it will delay start of treatment.

Thank you for sharing your experience

Where are you being treated? I am currently at Mayo in Rochester. My oncologist is "driving the bus" so to speak but I am doing the chemo locally. I finished my first round of chemo last week and it went well. I had some side effects, mainly nausea and some diarrhea, but they were very minimal. I am also interested in the types of surgeries you have had. Thank you so much for the encouragement and insight.

@lvngdghter, if you would like to submit a request for a second opinion at Mayo Clinic, you can get started here: http://mayocl.in/1mtmR63

How is you mom doing? What treatment plan has been suggested for her?

She is currently on Gemcitabine/paclitaxol. She is tolerating the chemo very well but her CA 19 is still sky high (went from 3900 to 3100 to 3700) after 2 sessions of chemo. The oncologist felt Folfirinox was too harsh and impacted quality of life too much. She has a repeat scan at the end of March.
She is keeping up a brave face for the family but every week is a feeling of dread waiting to see those new lab values.
Thank you for that link I think we will be seeking second opinions just to know we have tried everything

I live in Orange County, California. I started my treatment at Hoag, then UCLA (Irvine infusion Ctr), and now I’m at City of Hope Lennar, Irvine. My present dr did 6 years at Rochester, Mayo Clinic. before coming to COH. The 3rd was the charm for me! In September 2022 I was diagnosed with stage 2 pancreatic cancer with distal tumor approximately 2.5 cm with 1 lymph node involvement (and that’s all it takes to spread if so inclined). I had distal surgery in October with spleen and 75% of pancreas removal. A lot of complications afterwards; leaking pancreatic duct, pneumonia, GI bleeding, pancreatitis, and (Covid-not related to the cancer). Started Folfirnox chemo in January 2023 for 12 sessions over 6 months. My CA19-9 was 8 when I completed treatment and told by Hoag I was “cancer free”. By October 2023 (off chemo since previous end of June) my CA19-9 started rising. By December 2023 I had a biopsy and I had 2 small lesions in my lower right lobe of liver. Started GAC chemo in January 2024. CA19-9 decreased from 3840 to about 50 in September 2024. Quit Cisplatin chemo drug in September 2024. In October 2024 I began 3 MRIdean focused radiation treatments on my remaining 0.9cm liver lesion. By end of October my CA19-9 has stayed in low normal range around 10. In January 2025 I officially changed my care to City of Hope, Irvine. My oncologist ran mutation testing through Guardant (active cancer cells) and my KRAS12D and unknown effect of ATM mutations no longer appeared. A TP53 mutation at 0.3% (occurrence) is there , but significance for its particular base substitution is unknown. I’m only on 1 chemo drug now, gemzar, 2x per month and other than a little tiredness I feel great! I did gain a bit of neuropathy in my right foot which is another reason why my oncologist took me off the abraxane. I dont know how long I’ll be in this state with a “sleeping” pancreatic mutation, but I’m going to take every day I can get!! Also, a lot of prayer helps!!! I hope this gives hope to others!