Mom diagnosed with stage 4 adenocarcinoma of the pancreas

Very sorry to hear about the diagnosis. I would say positivity and encouragement are among the first things you could provide. Every statistic on Google and in medical literature is from data that is now several years old, and the statistics are only getting better as the drugs and treatments get better. I've been Stage-4 PDAC now for about 1.5 years, with no ill effects from the cancer. Chemo has not been fun, but it has kept the disease under control all that time with only 2-3 "down" days immediately after my treatment every two weeks. Others here and elsewhere have survived and lived healthy lives even longer at Stage 4. Everyone is different, and everyone responds differently to treatment, but there is hope!

It is also reassuring to feel confident your (her) doctors know what they're doing, so patients feel like they are getting the best care available. Sometimes you have to go through the "Level 1, Standard of Care" treatments before you get to the newer, more advanced stuff. If her doctors aren't experts in pancreatic cancer or affiliated with a large, high-volume research institution or center of excellence, you might want to see if she can get into one. Sometimes you can get the doctor at a top-notch faraway institution (Mayo, Anderson, Sloan, Hopkins, etc) to direct your care and have it provided locally by hometown doctors. That provides a good second opinion on things and shortens the path to clinical trials provided by that institution.

Although it's circular logic, staying in shape helps you stay in shape. Don't let the burden of cancer disrupt her physical activity or nutrition. Avoiding the slippery slope to a downward spiral will improve overall quality of life and preserve the "performance status" (overall health) needed for entry into many clinical trials.

Hello prayingforcure ,
The diagnosis is intimidating when first received. Make sure your mom goes to a center of excellence for pancreatic cancer and seems like you are doing it already, but let your mom know you are there for her support and guidance. It’s helpful to have friends and family for you whenever you need help during times like this. Keep the faith and stay strong.

Thank you so much for taking the time to reply! I am truly grateful. I will definitely look into the things you mentioned above. It's been an emotional roller coaster and it's only been a week since her diagnosis. I am concerned for my mother's mental well-being. I couldn't imagine being in her shoes. Your strength and the strength of others on this page give me hope and comfort. My mother seems to be doing well. She's staying active and seems to be in a positive mood. I definitely keep my head up when I'm around her. I know I have to be strong for her.

You're very welcome. As part of this process, the docs should do a germline genetic test to see if your mom inherited any DNA mutations that might be targetable by a specific treatment. If she is positive for any mutations, you should also get tested for them to help understand your future risk.

It would be ideal if she could get the germline mutation test and results back before treatment begins, as it might change the course of treatment. I have no medical training, and would almost never recommend a delay in treatment, but there might be time to get that test done and results back before treatment begins.

If her cancer was diagnosed/confirmed via tissue biopsy, ask if the tissue has been sent out for next-generation DNA sequencing. Information from this kind of "somatic" (environmental) mutation testing could also help steer treatment. If there is enough remaining biopsy tissue, PanCan.org can arrange to have that kind of testing done free of charge with a doctor's order as part of their KYT (Know Your Tumor) program.

How old is your mom, and what kind of chemo (which drugs) are they proposing?

I was diagnosed at State IV too, and apparently that is extremely common for pancreatic cancer so if it helps, don’t worry, that doesn’t mean you or yoir doctors were negligent.

It sounds like you, she, and her medical care are all set already which is great: the period before I got any treatment was the hardest on me, by far.

I second the call for genetic testing, which has two main types. It is easy to draw blood and check her for any genes associated with cancer.

It is slightly harder to biopsy a tumor and check *its* genetics, which could show a few or even many mutations from the rest of her body. Biopsies come in several forms and have their own costs and risks, minimal compared to the cancer but your doctor may not want to do it automatically (my first doctors did not). Push for having that conversation with her doctors if they haven’t raised getting a genetic profile of her cancer on their own.

Do stay positive. Pancreatic cancer has a reputation for poor outcomes, but the outlook has been improving recently, especially if they can learn specifics about the genetics of her particular tumor.

Cure,

Please IMMEDIATELY contact a pancreatic center of excellence - not a "center of excellence" for cancer, but one that deals significantly in pancreatic cancer - here are two helpful links.

Please do not wait or delay - if your loved one is being seen by local physicians they can assist in obtaining immediate access to a center of excellence. If, following initial consultation with a center, chemo is recommended, please consider relocating to that center so care can be provided to the highest standards, versus the local standards - these are sometimes very different.

https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/ from the National Pancreas Foundation (https://pancreasfoundation.org)

Another stage IV here, dx 11/2021. The first thing-do not let her (or you) be consumed with the stage IV diagnosis. It is just a label. Make sure she stays engaged with all the things she normally does. Life goes on. She may even find that she has the privilege of being a light in other’s lives in a new way. Helping others is one of the best distractions from our own situations, whatever they might be!
I heartily agree with the other comments; be sure the doctor is doing germline testing, tumor testing, etc Valuable information in designing treatments. More importantly, see a nutritionist now, if necessary, because her health needs to be in top shape! The healthier you are going into treatment, the easier the recovery will be each time. During recovery hours/days, she should feel free to rest as much as she can, read a book, even do crossword puzzles. Then bounce up and get back out there! There is always someone that needs a light only she can provide. I am a strong believer that God created us each uniquely with purpose. She may now have a new one.
Get her to a center of excellence and always get a second opinion! 💜

I too am stage IV with mets to my lungs. I was diagnosed in June of 2022. All of what has been said is so true! Do not let this diagnosis keep you & your mom down too long. It is okay to have a good day and a bad day; also to have a good day but cry yourself to sleep. But keep on fighting!
If you are religious, and believe in the power of prayer, do not be afraid to ask for prayers. I personally, think they have been really helpful!
Stay connected to this site for help when you need it. Have learned so much from the participants.
I had a short break with no chemo for 4 months & then my CA 19-9 shot up so now I am back on chemo & it is down 67% in 3 chemo treatments 🙂 So there are ups & downs, but keep on fighting & do not be afraid to question your providers, your family, or this help site!

Wow…everything that Mark says is exactly what we need to hear. I have Stage 4, PanCan also (July ‘22)with peritoneal carcinoma from those nasty little lymph nodes now. They removed 23 nodes during Whipple (Aug.’22). I get all my treatments and have doctors at my local hospital with consultation from Hopkins (2 hours away). All is good at age 76+ as I stay active, try to eat and maintain my weight (not easy), stay social, and make plans to do fun things. I read a lot and rest when my body tells me to. Got a great cleaning helper and don’t do things I don’t want to do. Keep living your life as best you can and sometimes forget about cancer totally!

Thank you guys sorry much! All of the positivity helps tremendously. My mother seems to be doing good mentally so far. They have done the genetic testing. She has not had a follow-up visit for the results. Unless they have called her with them and she hasn't told me. I do have access to her my chart. I don't quite understand how to read the results myself yet. They are putting a port in on the 19th of this month and starting chemo a few days after. I wish all of you the best and thank you guys from the bottom of my heart.