Decided not to have surgery. What’s next?

@marciak9, many factors go into treatment choices, including personal preferences, age and quality of life. What helped you make this choice that is right for you?

I have 6 amazing grandchildren and 1 more on the way. I want to live longer to watch them grow up but was afraid to have the surgery and be too sick to be with them. I was also afraid of the constant diarrhea. Dr said I’d need to be near a toilet at all times. He also said pancreatic cancer is aggressive and will spread but I would be too weak to make it through chemotherapy.

Hi Marciak9,
It sounds to me like you have made the right choice; especially with all of your grandchildren. The condition that you would be in after the surgery doesn't sound good. My husband is 82 and was diagnosed with stage 4 lung cancer. He has elected to have no chemotherapy or Keytruda treatments after he almost died by getting Keytruda treatments which are like chemotherapy. We just prayed and kept praying. That was over 5 years ago. He's doing great! My husband drives the car, prunes tall holly trees in the yard, folds the laundry, unloads the dishwasher, takes very heavy items to the dumpster, leaf blows the yard and the elderly neighbors driveway, takes the drain apart and unclogs it and fixes breakfast, lunch and dinner! Prayers do get answered. I think you have made the right decision. I will remember you in my prayers.
PML

Thank you so much. I needed to hear that! I’m so glad he has done so well! I need more happy stories like yours.

@marciak9 , I'm wishing you the best with all my heart with whatever you do next.

Are you getting any treatment at all, or stopping all treatment completely?

As a long shot, you might inquire about whether the Tumor Treatment Field equipment alone could be approved for you on a compassionate use basis. The manufacturer (Novocure) has it in various trials for PC in combination with other drugs, but I don't think there's any official use of the equipment by itself.

The patient wears a patch of electrodes on the abdomen and back, and carries a battery pack. The equipment generates an electric field which has some (unknown amount) effect on preventing cancer cell reproduction. The only side effect people experience sometimes is skin irritation where the electrodes are placed.

It's basically a "do no harm" kind of treatment... Might help, but definitely doesn't hurt. It seems this is a near-ideal "life extension" device for patients who have exhausted all treatments or can't tolerate chemo/radiation.

Worth a shot to ask?

I’m 82 and nine months ago was diagnosed with stage 1 pancreatic cancer. After looking at all my options I decided on no surgery and no chemo. I chose this because I don’t want to be sick from the surgery and sick taking chemo. So far I’ve been symptom free, have enjoyed my life with family and friends. I know what’s looming up ahead but right now I’m counting my blessings. My family has accepted my decision and offered all their support. I wish you well!

Thank you! And a pleasant journey to you!

I’m not turning down other treatments just not having that surgery. I wonder where I can get more information about Tumor Treatment Field. I see my oncologist on Tuesday so I’ll ask him.

Dr. Hani Babiker at Mayo/Jacksonville is doing a study with TTF, but only when combined with Gemcitabine, Abraxane,and Cisplatin. Pretty much my exact treatment, but it's a small, one-site trial, and I couldn't get into it because of various weird circumstances and criteria.

With that said, someone at Mayo/Rochester might interact with Dr. Babiker and know a little more about it. I know it has been used for pancreatic, ovarian, brain, and mesothelioma tumors.

I'm not sure what the requirements are to get it under any condition. I requested a "compassionate use" exception for myself. It hasn't been rejected, but it's caught up in so much (senseless) red tape I may never see it. I think the proper FDA approval terms are "Humanitarian Use Device" under the HDE ("Humanitarian Device Exemption") pathway for rare diseases. (I don't think PC was low enough to qualify as a "rare disease" but you still might find an oncologist willing to push your case forward.)

I also tried to get it used for my dad's mesothelioma. He was 85, unable to tolerate his immunotherapy after 4 months, and had to drop it all. The TTF manufacturer (NovoCure) was helpful in providing me a list of oncologists in our area who had worked with their equipment, but none of the three I spoke with were interested in lifting a finger to make it happen. 🙁

A few links:
https://www.tumortreatingfieldstherapy.com/
https://www.novocure.com/novocure-announces-favorable-independent-data-monitoring-committee-recommendation-to-continue-phase-3-panova-3-clinical-trial-of-tumor-treating-fields-therapy-in-pancreatic-cancer/
https://youtu.be/vVzJH02s3Q4 (75 minutes; starts talking about pancreatic cancer at 48:43)

So... it seems like a promising technology but a real longshot for treatment unless you have good rapport with a willing, hard-working, out-of-the-box oncologist. Any YouTube links might help you find one.

You can also ask about the MRI guided radiotherapy. This requires specialized radiation equipment, not widely available.
From Google search:
What is MRI guided radiation for pancreatic cancer?
Definition: Stereotactic magnetic resonance (MR) guided adaptive radiation therapy (SMART) is a technique that allows the delivery of higher doses to the gross disease in the pancreas while sparing normal tissues.

You Tube: