IPMNs: A New Cancer Worry For An "Old" Survivor?

September 27, 2019

A two-time cancer survivor discusses her recently-discovered pancreatic cysts.

What? Now the possibility of pancreatic cancer? I must have been pretending that cancer was no longer roaring outside my door these past nine years. I must have been pretending to myself that I hadn't really had two cancers - breast cancer nine years ago and a melanoma five years ago, plus the recent knowledge of my newly discovered genetic cancer mutation (PALB2). I know I must have pretended, because how I felt then is not how I feel now, right after the call from my oncologist.

I just discovered that I have intraductal papillary mucosal neoplasms (IPMNs), which were found during the MRI I had last week - an MRI ordered because of my PALB2 genetic mutation's link to pancreatic cancer as well as breast and ovarian cancer. IPMNs are a type of growth found in the pancreas that can carry a concern for cancer. One of my IPMNs is .3 cm in the head of the pancreas and two are 2mm each in the neck of the pancreas. Location and size matter: small is good. Still, they are three tiny little spots that could throw me into a cancer panic.

I try to take a breath and practice my calming techniques. This isn't my first cancer experience. Still, here are the rubs - technology (like an MRI) can sometimes find very tiny stuff and genetics is a fast-growing new area that often has no long-term data. I did not have symptoms. Do we know the likelihood, based on my genetics and previous cancers, that my IPMNs could become pancreatic cancer? Sadly, I understand that I am not the only one who will be faced with this kind of question. New genetic cancer research advances and cutting edge early-detection technologies are creating more and more of these questions; questions whose answers have not yet been discovered.

My oncologist will consult with the genetic specialty oncologist at the local university and then she will share with me his thoughts on how to proceed with me. She also wants me to see a university pancreatic specialist doctor for a consultation. My possible options based on my own research so far include an endoscopic ultrasound, possibly with a fine needle aspiration, pancreatic cancer blood screening tests, surgery to remove the three IPMNs before they become cancerous, or something as simple as regular monitoring by MRI to see if the IPMNs grow or change.

Meanwhile, I continue cautiously with my own research, grateful that there are pancreatic guidelines out there. I joined a Facebook IPMN support group with gratitude in my heart that such a group exists.

Please learn from my experiences: As a cancer survivor, keep your genetic testing current because there are increasingly more things to be found, and we all understand that cancer caught earlier often has better outcomes. Be careful and cautious in your research by choosing trusted sources. And finally, find and work on your cancer coping tools, including connecting with others who are in a similar boat to you. In the meantime, I will try to learn more and will try not to let fears about tomorrow interfere with today's opportunities for joy.


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