Decided not to have surgery. What’s next?

Posted by marcia @marciak9, Aug 9, 2023

I decided to not have the surgery in which Dr Truty at Mayo was going to remove my pancreas stomach and spleen. I guess I’m going for quality of life but will most likely be just a few years. Anyone else following that path? Any experience you can share? Anyone live longer than a couple of years?

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

Colleen Young, Connect Director | @colleenyoung | Aug 15, 2023

In reply to @marciak9 "I’m not turning down other treatments just not having that surgery. I wonder where I can..." + (show)

@marciak9, hope your appointment went well. I look forward to hearing what you learned.

marcia | @marciak9 | Aug 15, 2023

In reply to @colleenyoung "@marciak9, hope your appointment went well. I look forward to hearing what you learned." + (show)

It went really well! No sign of metastasis and tumor has gotten smaller! Dr Truty says we could say I’m in remission! Dr Carr my oncologist said it will reappear so we can’t say I’m cured. Could be a year or two. They will repeat scans and bloodwork every 2-3 months.

mayoconnectuser1 | @mayoconnectuser1 | Aug 16, 2023

Can you continue on chemotherapy?

marcia | @marciak9 | Aug 16, 2023

Yes I can still have chemo if it comes back. I can have radiation but not in the same spot.

mayoconnectuser1 | @mayoconnectuser1 | Aug 16, 2023

In reply to @marciak9 "Yes I can still have chemo if it comes back. I can have radiation but not..." + (show)

I guess what I am asking is can you continue on chemo NOW - vs waiting for it come back?

Chemo is awful, but it does kill cancer cells - I've noted the usual methodology is to wait for indications of recurrence, but this just seems so counterintuitive.

marcia | @marciak9 | Aug 16, 2023

In reply to @mayoconnectuser1 "I guess what I am asking is can you continue on chemo NOW - vs waiting..." + (show)

No I think they need to wait to see a new occurrence to know what kind of chemo. I’ve never heard of maintenance chemo

mayoconnectuser1 | @mayoconnectuser1 | Aug 16, 2023

In reply to @marciak9 "No I think they need to wait to see a new occurrence to know what kind..." + (show)

The success stories I have read all seem to indicate extended, "maintenance" if you will, chemotherapy.

I'm not a medical professional, but my sense is that if there are cancer cells that are hidden, stopping chemo seem illogical, especially given the inability of current testing to actually identify them.

Now, if your CA 19-9 has shown a massive decrease to well below the 34/37 threshold, and stays there, or continues to decrease, perhaps this truly means continuing good news.

I don't trust the pancreatic cancer cells.

mayoconnectuser1 | @mayoconnectuser1 | Aug 16, 2023

marciak9,

I don't pretend to understand these citations, but it sounds like maintenance is indeed a methodology, but lots of variables, including health, changing chemistry, changing components, lessening components, etc.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7350045/
https://ascopubs.org/doi/full/10.1200/EDBK_397082

katiegrace | @katiegrace | Jan 17 6:48pm

In reply to @marciak9 "No I think they need to wait to see a new occurrence to know what kind..." + (show)

Marcia,
How are you doing?

marcia | @marciak9 | Jan 18 3:51pm

In reply to @katiegrace "Marcia, How are you doing?" + (show)

Hello
I’m doing pretty good. CA19-9 is 11 and tumor is the same size. I have been experiencing sharp stabbing pain in my stomach every once in a while. Nothing shows on CT. Oncologist thinks it may be the pancreas pressing on the celiac plexus nerves. Trying an extended pain killer to get ahead of it. If that doesn’t work he can go down with a scope and block the nerves.
I didn’t mean to come across as an expert on maintenance chemo. I’m not on any. We scheduled a return visit in 2 months.

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