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Hello everyone. My wife was just “diagnosed” with late stage/ Stage 4 metastatic pancreatic cancer (spread to liver - multiple lesions). We do not have an official diagnosis until her biopsy on 2/14/24, but oncologist said “I can tell you I do not believe it is not cancer based on symptoms and MRI findings.” She had CA19-9 done and it was over 40,000. She has an CT in a couple of days to see if it spread further into chest. Oncologist said surgery is not an option and goal of chemotherapy is not to cure, but rather shrink tumors for comfort and to sustain life.
We are terrified. She doesn’t have jaundice or anything, but has lost around 15 pounds in past month, has pain in left side and back, and has lots of stomach area pressure and reflux type symptoms. Otherwise she is still functioning and doing daily routines - driving, cooking, shopping, etc. She just tired out quicker.
We are trying to be hopeful but feel very worried the biopsy will show more bad news - I.e. saying chemo isn’t really worth it at this point.
Not sure how we will deal with that if it happens.

@hubby11 , Sorry to hear; that is indeed a scary diagnosis, but there are reasons to be hopeful.

It does indeed sound like surgery is not an option, at least not yet. Everyone is different, so the answer to a lot of questions will be, "It depends..." If she's otherwise fit and healthy, she might respond very well to aggressive chemo or a clinical trial. I've been stage 4 for a year and dealing pretty well with biweekly chemo. Others here have done so even longer.

But first things first: Make sure you've got a serious pancreatic cancer specialist onboard; ideally at a "center of excellence" in pancreatic cancer. (Think Mayo, MD Anderson, Memorial Sloan Kettering, Johns Hopkins, etc. if possible) but somewhere in that class that you might be able to travel to or relocate to for a while. Make sure you get CD/DVD copies (one for you, one to ship) of every scan she gets. Get login accounts for every electronic medical record and patient portal system at every institution you visit. (Some, like the MyChart system, can link and share records between institutions.) Keep paper copies of medical records, reports, and test results that you can forward immediately in case the electronic methods fail. Take pre-written lists of questions to every appointment so you don't forget the important ones. Take copious notes while there.

Consults can take a while to get, so start early. Ask if you can get the basic genetic tests done first. A germline test like Invitae can inform you if she has any inherited mutations that might be targetable by a specialized treatment. A somatic test like Guardant 360 can identify any mutations that just happened by chance, environmental cause, etc. These can also help guide specialized treatments. Both are blood tests you could do now w/o waiting for surgery or biopsy. Although the biopsy is close on the calendar, if there is any delay, you could have results from these tests in your back pocket already.

What kind of biopsy are they going to do? If it's via endoscopic ultrasound (EUS+ERCP), they typically take a very small (FNA - Fine Needle Aspiration) tissue sample from the pancreas or ducts. They can analyze it under a microscope during the surgery to make a quick determination of malignancy or not, which they usually send to another pathology lab after surgery for review.

But the tissue is not always large enough or preserved well enough to share, and sometimes when it is, they still don't send it out for further analysis, but you should ask if they can -- again so you have more data and get it sooner rather than later. Tempus Labs does various genetic tests on tumor tissue to determine if other targetable mutations or properties are present.

If she is not currently jaundiced, it suggests the bile ducts are not blocked, but they could be blocked later depending on the tumor location and growth rate. That might guide the endoscopic surgeon to implant a stent to keep the ducts open. Some stents for the common bile duct are made of plastic and some are made of metal, which last longer.

If she is a candidate for future surgery (e.g., Whipple if tumor is only in the head of the pancreas), they might be able to remove the stent at that time. If she is not a candidate for cancer surgery, she might need to have the stent replaced periodically, so a longer-lasting stent is desirable from the perspective of fewer replacements. Something to ask about up front...

If they do a core needle biopsy (percutaneous) or a laparoscopic procedure, they might be able to get more tissue, but you should still asked them to perform the most detailed "NGS" (Next-Generation Sequencing genetic) tests they can do.

There are 4 or 5 types of pancreatic cancer, so it is important for them to determine which kind.

It might be beneficial if they can also do a PET scan or make the upcoming scan a combined PET/CT to help identify any other spread -- again, sooner rather than later.

Having all the data you can get helps make the best decisions first. Despite all the amazing science and technology available, it's really tough getting access to it, but your first chance (before any treatment has begun) is your best chance.

Unfortunately, some of the promising clinical trials (vaccines, etc) only accept patients who have had no treatment yet. Your Catch-22 is finding one soon enough that you don't risk excessive cancer spread while waiting.

It is possible for a biopsy to miss cancerous cells (another story for later), but based on what you've shared so far, a common outcome is adenocarcinoma and recommendations to get a chemo port and immediately begin one of two "SoC" (Standard of Care) systemic (infused chemo) treatment.

The choice of chemo, if they go that route, is usually between a regimen based on Folfirinox (for younger, fitter patients) and a regimen based on Gemcitabine (possibly including Abraxane and/or Cisplatin) for others. But there's no guarantee one will work better than the other in a given patient. The tests mentioned above may help docs zero in on one or the other using more data than just patient age and fitness.

The systemic therapy options are topics with details best saved for another post, but in summary, pancreas specialists at a center of excellence working from all obtainable data can give you your best options up front.

I'll try to add more later. Hit us all up with questions -- everyone here wants to help and has different experiences to share.

Wishing you and your wife the best!

Thank you for the information.

Oncologist did say likely adenocarcinoma due to fact the tumors have grown so fast in a short amount of time. First tumor that was noticed was in an ultrasound in the liver in early December - grew substantially by the time a fibroscan of liver was done mid January - and at that time a new tumor of similar size of over 2cm found that was not there in December. An MRI done 2 weeks ago found 3 large tumors and “several other small ones”. That is when the largest tumor found in body of pancreas was found. They said since it’s in the body and not head or tail of pancreas Whipple not an option.

She has other health issues to include diabetes, high blood pressure, some coronary artery blockage (she has a stent in one).

They did say they would be putting in a port to do chemo.

Biopsy on 2/14/24 is going to be a CT guided needle biopsy through the chest to collect sample from tumor in the liver. Dr said since it’s in the liver already it would be easier that way and give same information as directly from the pancreas.

What meds have you been taking in your iv treatments ? Mostly I see that the oncologists are recommending Gemcitabine and Abraxane! Is that the ones they used?

@marciak9
Have you done a CTDNA lately? While you may not have evidence of a solid tumor, there could be cells in your bloodstream. Negatives on this test aren’t always accurate but they are finding amazing correlation with positive tests.
Even though my CA19-9 is in normal range, I will not stop some form of therapy. Most doctors have told me that until you have experienced no reoccurrence for 5 years you aren’t really in the clear. But…
I was staged IV. You may have a different situation. For me, I am investigating “maintenance” possibilities which include gemcitibine infusions (without abraxane) and also Xeloda (Cisplatin)

Without at least 2 or 3 months of CA19-9s consistently in normal range I won’t assume NED. Here again, markers track my condition very well. For some they don’t so it does become more of a surveillance game with scans. Congratulations on being where you are and don’t give up the fight!!!

I have cyst and lesions on my pancreas and liver. Just had my MRI Jan 29th 2024. I have to meet with my dr at the end of the month. I have a cystic lesions measuring up to approximately 1.5 cm the pancreatic body. The MRI says these likely reflect branch duct IPMNS. Has anyone else had this problem? Thank you for any info.

Hi
Thank you for your information. I haven’t heard of CTDNA. I’ll ask my oncologist on Thursday. Is that a blood test?

I saw my pulmonologist today. She saw the haziness in my lungs but can’t tell if it’s sarcoidosis or Mets. There are a couple of sours that I think look like lesions. She said she could do a bronchial scope to find out if it’s an infection. Hopefully I’ll get answers on Thursday.

@gamaryanne , Did you mean Xeloda = Capecitabine, not cisplatin?
https://www.gene.com/patients/medicines/xeloda 🙂

@marciak9 , ctDNA is short for "Circulating Tumor DNA" -- microscopic DNA pieces of tumor DNA that might be floating around in your bloodstream, not attached to any organ, and too small to be seen on imaging.

The Signatera test is one example of a ctDNA test. Doctors send a sample of your biopsy or surgical tissue to Natera, who builds a blood test that looks for DNA specifically matching the DNA that came from your tumor. It's pretty sensitive but far from perfect (was late detecting my recurrence, which rising CA19-9 actually signaled first). Nonetheless, it's one extra non-invasive tool, another "set of eyes" to help with the monitoring and decision making.

ctDNA is not quite the same thing as cfDNA (cell-free DNA). The Guardant 360 CDx is a cfDNA test used to identify mutations related to cancer. The Grail Galleri test is a cfDNA test used to detect the presence of different cancer types and origins.

They all have some use in the cancer diagnosis and treatment world, but differ in application and approval levels by the FDA and also in doctor acceptance, so your mileage may vary.

I have no medical training, but will never hesitate to ask for more data and another set of eyes. 🙂

@hubby11 , The liver biopsy sounds sensible to me (with no medical training) for that purpose.

It won't hurt things to get a chemo port, but it doesn't mean she has to use it right away. Nature (cancer) has a way of rushing patients into decisions they don't have time to research and digest.

I would suggest you contact the Pancreatic Cancer Action Network ("PanCan") at https://pancan.org/ and ask them to set you up with a counselor / advocate / case worker. They are a good source of advice about many things including clinical trials.

You might also reach out to Cancer Commons at https://cancercommons.org/
They also have some good insights and links into clinical trials.

Both of them might only have generic trial info available at first, and then refine that after you start getting results about mutations from the genetic tests. But you'll have to keep your own eye out for those that aren't mutation-specific or on the radar of your current medical team.

Some trials are not mutation-specific, so they might be overlooked in a search that's too targeted. The bigger research institutions have more going on within their own campuses and more awareness of what's going on elsewhere, which improves your odds of finding an appropriate trial, which might be easier on the mind/body and/or more effective as a treatment.

If SoC chemo is the first route taken, be aware there are many, many strategies to minimize the misery, so feel free to search the old posts here or make new ones. Docs can test before starting to see if you're allergic to some of the meds in a chemo cocktail. They can start with lower doses and build up according to patient comfort, or skip some of the drugs first and then add them later according to patient comfort and response. They can add different anti-nausea pre-meds, pre- and post-IV hydration, and more.

It's always good to have the second opinion doctor/institution and clinical trial options at the ready in case the first decisions don't pan out and the drive is still there. Sometimes the sheer volume of research and paperwork takes it out of me, but good days and good people always restore me.

It's also well understood and and completely respected when a patient says, "enough!" as my dad did last year in his battle with mesothelioma. We're all in this together but all individuals with different needs and circumstances.

@hubby11
So very sorry to read this. Stage IV are words no one is prepared to hear. I heard them 11/2021.
Dittos to all @markymark shared. The biopsy to liver will confirm the pancreatic cancer without going to the pancreas. Quite surprised they would say no surgery with tumor lying in body. However, curing/stabilizing the disease is the first priority. Systemic chemo is the only available way to do this right now.
I can tell you my situation was similar. Tumors in my liver were the mass of a baseball! Through system therapy and an interventional radiation procedure, they shrunk and most died to the point that I was able to have liver resection. To get to surgery took time and lots of chemo! My pancreas surgery was 12/2022 and my liver surgery was 2/2023.
With your wife’s other conditions they will monitor closely. At a good center, chemo doesn’t have to be too awful. They will give her pre-meds to lessen the side effects and she will have days of fatigue. But it doesn’t have to limit her from most of her daily activities IF she has the will to live and to fight! My thoughts-start chemo immediately and confirm both tumor and genetic testing are underway. May God bless you as you start on this journey💜