Stage 4 pancreatic cancer: Should I do palliative care and enjoy life?

Posted by annettebc @annettebc, Jan 24 8:20am

Dec 24 during my biannual MRI to watch my NAFLD - liver cirrhosis- a 3.5 Mass was discovered in the middle of the pancreas that was as not there 6 months prior.
CTscan, EUS with biopsy, Skull to thigh petscan - results = inoperable mass in middle of pancreas, mass in left lobe of lung, debatable whether lymph nodes are involved.

I had Hodgkins lymphoma stage 3 A in 1985.
Lots of radiation at that time.

I’m in the hospital now with an infection and just had 5 varices banded.

I’m meeting with an oncologist this Weds and asking for input on questions.

So far I was just planning on-
What’s the outcome from therapy?
Should I have just palliative care and enjoy life?

Ironically I gave notice of planned retirement for Oct 2025 - back in Sept. I had a good plan for winters out of the Midwest and enjoy spring and summer on Lake Michigan
I’m still working full time but not:)

I’m 64 years old.
Thanks reading all of this.
I’m following your journeys and adding you to my prayers.

Annette

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

marcia | @marciak9 | Jan 24 9:16am

Annette,
So sorry to hear the news! You’ve really had a lot of sickness around you. I’m praying that you enjoy your retirement. You’ve got this!

joiedevivre | @joiedevivre | Jan 24 10:30am

Get a second opinion on why mass in middle of pancreas is inoperable. Just to be sure first surgeon got it right. All the best.

gamaryanne | @gamaryanne | Jan 24 11:05am

Annette,
DO not give up! A few things....chemo is actually not that intolerable if you come into it healthy. They give pre-meds to help assuage some of the toughest moments . It just requires a realignment of a busy schedule - but we can all use a little more downtime in this busy world.

Second...there are many therapies out there and this disease is becoming more of a chronic disease when it is dealt with early. Inoperable in the center of your pancreas?? hmmm I think you need to go to some NCI pancreas designated centers for second opinions, even if you are at one now. Most likely chemo will be required first, but I'm surprised you have been told surgery is out of the question.

WIth this disease, you must be your own advocate! Its not easy, but there are many resources here as well as these sites:
pancan.org
lustgarten.org
Let'sWin.org

Stay strong!

mayoconnectuser1 | @mayoconnectuser1 | Jan 25 8:53am

If these tests and assessments were not done at a pancreatic cancer center of excellence, you should immediately contact one and be evaluated - immediately.

Local care, no matter how well intentioned or advertised, is NOT sufficient.

199 | @199 | Jan 25 12:40pm

The mass in the left lung is probably why it is inoperable. Check with your oncologist. Some chemo treatments are not that bad. A lot depends on the person and the meds & the frequency. I have to say I was diagnosed at a Mayo Clinic and told to find a local oncologist. Fortunately, the oncologist I chose is connected to Mayo. Try the Pancreatic Cancer Network site in addition to this one. The Pan Can site can give you a personalized connection to someone to help answer questions in addition to providing you with a list of things to ask. This Mayo site is great too! I am two months short of being 3x alive of what I was given so there is hope! Prayers to you!

Colleen Young, Connect Director | @colleenyoung | Feb 5 3:57pm

@annettebc, treatment decision making isn't easy. You're asking good questions and gathering feedback from out stage 4 pancreatic cancer survivors and patients can help to know your options. Everyone is different, of course. And ultimately the choice is yours according to your preferences, the disease and the best information that your oncologist is able to provide according to your disease and health status.

Here are a few related discussions that you might appreciate:
- Treatment options for pancreatic cancer stage 4? https://connect.mayoclinic.org/discussion/just-diagnosed-pancreatic-cancer-stage-4/
- Stage 4 pancreatic cancer progression: Don't know what to expect https://connect.mayoclinic.org/discussion/stage-4-pancreatic-cancer-progression/
- Anyone chosen palliative care? What are the last months/weeks like?https://connect.mayoclinic.org/discussion/has-anyone-refused-whipple-and-chosen-palliative-care/

@annette, how did the conversation go with your oncologist? How are you feeling about your options and decisioin?

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