Question regarding “dead” tumor

First, I am not a medical professional. My posts related to my sister's fight are accessible on this site.

Pancreatic cancer is not like other cancers. Cancerous cells spread very quietly - sometimes in the midst of intensive chemo and radiation treatment.

Is he being treated at a center of excellence? If not, consider relocating him to one - treatment at one of these is different from local medical centers.

A CA 19-1 score of 202 is not good, but it is a single tool. A normal score is less than 34 or 37, depending on the manufacturer of the test.

My advice would be to continue chemotherapy - in maintenance mode if necessary - while getting him to a center of excellence for assessment.

My tumor is considered dead, because it doesn’t light up on the pet scan. Now that doesn’t mean there might be a few cancer cells inside or on its way to other organs. It’s just a waiting game now. I’ll have to go in every 2 to 3 months for repeat scans.

So, Marcia, you are not doing maintenance chemo?

I was just told that I am in radiological remission which means that the pancreatic tumor is no longer seen, and the lung nodules are stable, some gone. My CA 19-9 is down to 20 which is good too. However, there will always be cancer cells that are microscopic that can cause the return. My oncologist says that once a stage 4 you are always considered stage 4. I am going for 3 more chemo treatments and another CT and then hopefully a long break but with monitoring like blood work monthly and CT every 3 months. That decision to continue with treatments or take a "break" for as long as feasible will be what I want & right now I am very much leaning towards the break.

No. Not doing any chemo right now. My last bloodwork and scans were earlier October and they came back good. Dr said I am considered stage three until it metastasizes then I will be considered stage 4. He is not calling it remission which I don’t understand.

OK - I am not a medical professional, but what I have read from survivors is that many continue with chemotherapy - tailored, but they continue. Many for years. Terminating chemo, imo uneducated opinion, is not what I would do under like circumstances.

Some folks cannot tolerate more chemo, but in many cases they try to continue with the same chemo, vs tailoring.

I will again note, that unless you are being treated at a center of excellence for pancreatic cancer, you are not getting front line treatment - this isn't to say the medical professionals in your area aren't working hard and trying to do the best for you possible, it is simply because they do not specialize in pancreatic cancer - pancan is not like other cancers. It's survival rate is low - your best chance will always be at a place like Mayo (Rochester, not Jax or Arizona), MD Anderson, Memorial Sloan Kettering, etc.

Inoperable sometimes means the patient would be too weak to sustain such a rigorous surgery or it might be indicative of the delicate location of the tumor where it possibly intersects major arteries or veins. Dead I think means it was killed (yeah!) as it probably no longer lights up on a CT scan and the tumor isn’t growing? Your oncologist should be able to explain it to you. Best of luck!

Sure, "dead," but the issue remains how to kill any other cancerous cells that are likely still in one's system - so, this is where continuing chemo comes in.

@dlm2023, have you had any of the "liquid biopsy" tests to see if there are microscopic levels of ctDNA (circulating tumor DNA) in your bloodstream?

I think you can do a Guardant 360 test or (non-FDA approved Galleri test from Grail) if you didn't already have surgery.

If you did have surgery and enough tissue was saved, you could also/instead do a test like Signatera to get additional data on the state of your tumor and disease. Be cautious!!!

what treatment did you use?