Prognosis Stage 1 chose not to have treatment: What can I expect?

@brookie82 ,

It's impossible for any of us (non-medically trained) to give a prognosis, because everyone is so different, and because so many details of your case are unknown.

If you were diagnosed stage-1 a year and a half ago and have no symptoms now, it's even harder to say.

The biggest questions to start with would be what type of pancreatic cancer is it? Where exactly was it originally located? Have you had any updated blood tests or imaging done since then? Is there any evidence it has spread since then, and if so, to where?

Some cancers are more aggressive than others. After Whipple surgery to remove the stage-2 PDAC tumor from the head of my pancreas, I went from NED (no evidence of disease) to stage-4 in about 5 months, with no symptoms.

If you have updated diagnostic info and no evidence of spread (i.e., you are still stage-1 or stage-2), you might have the freedom and time to consider some less invasive treatment options. "IRE" (IRreversible Electroporation), done percutaneously, is one surgical alternative you could ask about.

IRE is not generally considered adequate to completely kill a tumor, but does often shrink or damage it and provide some life extension.

It is also not generally performed as an alternative to traditional surgery like Whipple. But, given your age, recovery from Whipple is not easy. (Not easy at any age!) Although IRE requires general anesthesia, when done percutaneously (just by needles piercing the abdomen and guided by CT or other imaging to the tumor site), recovery is much easier than from an open procedure like a Whipple. You might find a surgeon willing to perform this as a palliative measure.

There's a short Q&A with some good information and a video from Stony Brook here:
stonybrookmedicine.edu/patientcare/surgery/patient-care/clinical/upper-gastrointestinal-general-oncologic-surgery/patient-education/faqs-about-irreversible-electroporation-ire-for-pancreatic-cancer

It's not the only info out there (plenty more on YouTube and Google), and I'm not endorsing Stony Brook (no experience with them or links to them), but the link provides a pretty concise overview.

Of course I (we) totally respect your choice to treat or not treat, and wish you all the best!

If you were diagnosed 1.5 years ago at stage I and not experiencing any symptoms, the tumor type may me a Neuroendocrine tumor which are the less aggressive, slower growing form and more easily treated when found early. The PDAC form is the most aggressive type fast growing and then to metastasize early. It sounds like you have the former type as opposed to the later type. It would be described on a cellular pathology report of the biopsy done to categorize it.

NanoKnife/Irreversible Electroporation (IRE) is a less invasive procedure that came on the scene around 2015 where it was being used to treat metastatic tumors to the liver. Recently it is being used to treat primary pancreatic tumors. The technique uses 6 small electrode probes inserted around the periphery of the tumor. A very short duration of voltage is passed between two probes, then alternating to each pair combination. The micro-burst of voltage causes pores to form in the cellular membrane of the metastatic cells in which the cell membrane damage is irreversible. With no repair possible, the cells go into a state called apoptosis (programmed cell death).

At present there is a large phase III clinical trial being conducted at a number of site using this less invasive procedure avoiding surgery in those that are having it done. More on the technique and the trial at this link-
https://www.angiodynamics.com/studies/direct-study/patient/

@brookie82, it's great to hear that you remain symptom free. What followup schedule do you have with your cancer team to monitor the tumor and how you're feeling (symptoms)?

Hi,

There are always ways to fight no matter the age factor, I would encorage you to take a look at this findings accidently I came across yesterday, this video introduces a brand new treatment of certain kind of cancers to start with, it mentioned that this technology is happening at a Southern California Hospital, the treatment device is called Edison Hystertripsy System, no further information is given. I would say you might want to find out where this hospital is, and call the hospital to get more information on this new treatment, it is using sounds to cancel certain kind of cancer right now quite successfully, it may work for different cancers, you never know.

I found this video on TikTok under the search name of Gina Bonanno-Lemos, easy to find there.

Try it, never give up.

Peter

I am 72 years old, and was diagnosed last September with stage 2 pancreatic cancer. My "backet list" is complete and after hearing all the side effects, some permanent of chemo and surgery for treatment I decided to decline treatment also. I do receive palliative care for my pain and to help me deal with my eating issues. You should be sure to look into this kind of care, it will help your quality of life without being invasive like chemo or surgery. It is hard to say what I will be facing in the future, even my doctor doesn't know. It all depends on how my cancer grows. How fast and where. I do know what my life would be like if I had agreed to treatment. I believe in quality of life, not the quantity. I was able to travel at Christmas to visit family and have been able to host them here were I live. By the way I live in Nevada, they live in Maryland. I don't believe it would have been possible to do these things if I had treatment last September.
Declining treatment is a hard and very personal decision, not everyone agreed with mine. But I know it was the right one for me. God willing I will be traveling again this summer to visit family. Wishing you the best of luck with your health journey.

We are very similar. I was diagnosed two years ago and without treatment I’ve been able to enjoy life. Back in October I did have to have a stent put in my bile duct, have food issues and some fatigue. I’m on hospice thankfully. But I’m still able to go to church, out to dinner occasionally. So, your right. It depends on how and where the tumor grows. It was a hard decision to make . My family agreed but people in the medical field resisted my choice. Thanks for your message. It helped me tremendously.

Did you have any symptoms when the cancer moved to the liver?

Not in liver yet. Had a stent put in bile duct several months ago due to jaundice. Nothing since.

brookie,

Did you respond to StageIVSurvivor regarding alternative approaches, and to confirm which type tumor you have? You read MarkyMark's post?

I believe both are attempting to educate and motivate you to review your circumstances ... while I am not a medical professional, it seems like you have made a firm decision ... perhaps with not all available information?