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Pancreas Cancer

Sorry -- was tired was posted 08/01/2009 10:19 am by Sandra (TX)
E-mail Address: smpettit@swbell.net

Message Text
Yikes! -- Sorry for the gobblety-goop reply. I was falling asleep (not drunk as it appears) last night when I posted that message...thought I was just shutting off my computer.

2nd Attempt Reply:

I appreciate where you're at in terms of thinking you're done with your surgeon. The thing is, you may not be done with surgical procedures.

Now, catch your breath -- my own gut tells me all is fine with you and that with this being your first CT since surgery, there's very likely a lot of noise that needs to settle down.

Maybe I'm just finding it really hard to believe the cause of such a messy CT scan result so soon after surgery would be recurrence of cancer, but I'd sure take an aggressive approach and get ALL my doctors to weigh in on it; at the very least your surgeon and onc. should confer with each other.

You did the right thing in emailing your surgeon -- it was the perfect approach.

What you might consider now, is calling your surgeon's office and schedule an appointment to discuss the results face to face -- if only for your own peace of mind.

Consider this, your surgeon did his work with the goal of achieving a surgical cure for you. If so soon after surgery, your scans are suggesting that goal wasn't met, he's want to be involved. Plus, if your surgeon is experienced with NETs, he may know more about f/u

My post-surgery follow-up called for octreoscans and CT scans every 6 months. My surgery was also 'successful' (clear margins, 26 lymph nodes all clear, and no evidence of spread to other organs). My surgeon did not perform an intra-operative ultra-sound on my liver, and instead relied on examining my by palpation.

My first set of 6 month post-surgery scans were clear. At 12 months post-op, a recurrence appeared in my liver. The next year, we chased the 'spot' on my liver with two RFA procedures. Following both RFA's, only the octreoscan showed that I had residual tumor (too small to see on CT).

At 2 years post-op, I had a 2nd major surgery -- a partial hepatectomy removing 1/3 of my liver (and a total of 4-5 small tumors, only 1-2 of which glowed on a pre-op octreoscan.

20/20 Hindsight lessons:

--Keep your surgeon as part of your follow-up team. Had I done a better job of this, we might have excized the first recurrent spot with a procedure under my surgeon's direction before it had a chance to multiply.

--Know when to push for a f/u octreoscan. I was advised to wait 6 months following my first RFA to have another octrreatide scan, although I questioned if we shouldn't do it sooner to confirm the RFA was successful. The radiologist was convinced he'd been successful at burning out the liver tumor, and I wanted to believe it was gone. In hindsight, I should have pushed for a f/u octreatide scan shortly after the RFA. Again, we might've avoided the residual tumor having a chance to seed and multiply (though we don't know for sure this is what happened, as there may have been multiple tumor seeds present when the first pancreas surgery was done).

This all probably TMI for you. Hope it helps in some way.

My advice, is be agressive with your followup and be a SMART patient.

To me, cancer seeds are like zombies in a scary movie. Just when, you think they're all gone and your safe, you'll find yourself screaming to find they've returned.

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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
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