← Return to Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

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I have tried several times to reply to you. I am so appreciative of your extensive review of the recent medical literature regarding IPMN’s. My clinical data does not support my physical symptoms. My lesion is 8X6 mm. with the pancreatic duct at 2.5 mm. My paternal uncle died at 75 from PC( I have no details) I am 75.No known mutations. I have personally done 2 CA19-9- both normal. I will see if I can get the test you mentioned ordered. My Dr has ordered an MRCP and some general blood work and CA19-9. I was seen at Mayo a year ago and the MRCP that was done showed a small cyst on the tail?, none on the body, and was told it appeared benign. My abdominal pain, back pain, (R) shoulder pain all are related to fat intake. I’ll see what these test show. Thank you again.

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Replies to "I have tried several times to reply to you. I am so appreciative of your extensive..."

Hi @gjbrx66 , were you referencing a reply to me? If so, sorry for the delayed reply, but you're very welcome. 🙂

If you're trying to reach me or any forum member directly, putting the "@" symbol before their name makes sure it pops up as a notification in their alerts area. (e.g., @markymarkfl ).

If you click REPLY under a post, it should also pop up an alert for that person, but 3 posts up from this one, it looks like you hit REPLY to your own post. (' In reply to @gjbrx66 "I have ..." ')

You can also click on that person's name and be routed to a page that allows you to send them a private message (basically an email) and get a more obvious notification of that, but I've had a few occasions now where I couldn't send private messages to a new forum member, and couldn't send one myself the first few weeks that I was a new member.


Anyway, with the repeated caveat that I'm not a medical professional (or even a good amateur) of any sort...

The germline test I had was from Invitae, so their report is the only one I know by name. Knowledge of my ATM mutation from that test helped identify drugs I would likely have a better response to (platinum agents and ATR inhibitors); it also helped identify the same mutation in my dad (not quite as relevant to his cancer) and in my brother (now getting much closer monitoring of his pancreatic cysts).

The somatic test I had was the Guardant 360, which basically just confirmed that I had an ATM mutation, but couldn't confirm somatic or germline origin (which we already knew from Invitae). But Guardant's report did have a helpful summary of relevant drugs and clinical trials.

It has been pointed out here (thanks to @stageivsurvivor ) that some people do not produce CA19-9 (or shed it from their tumors), so normal levels are not a guarantee of being tumor-free, ("Absence of evidence is not evidence of absence!") but it is a good sign.

When I had rising CA19-9 levels and MRI evidence of the recurrent tumor, 4 snippets of tissue from an EUS biopsy still came back with a false negative that delayed my resumption of treatment, so EUS and biopsy are not 100% definitive answers either.

Three symptoms I experienced in my first bout with PC were coincidental. A good portion of my weight loss was from exercise and diet -- so much that it masked the portion of my weight loss that came from the PC. Second was back pain while walking/jogging, but it came from all the extra time with bad posture at my computer researching my recent PC diagnosis. It was fixed with massage, PT, and a better chair. Third was the extra neuropathy in my left foot after 6 months of Folfirinox and a Whipple procedure. Bad posture at the computer chair again had damaged the left peroneal nerve just below my knee; better attention to sitting position during extra hours on the computer fixed that too.

...So, I'm sorry I can't think of much useful to add regarding your symptoms and situation, other than I hope you remain vigilant; I hope your symptoms are coincidental and not related to any kind of cancer.

Wishing you the best, and hoping you'll share anything you learn with us here.