Benign or Malignant IPMN? What to do next?

Of course you can and it will be my pleasure to help @hopeful33250 / Teresa

Update: Randomly my consultant called me and it seems that the hospital missed that cytology test but due to my CEA levels been so low , the MDT council believe that my cysts might not be mucinous .. The decision is now for me to have an MRCP in a different hospital that offers more protocols in June (6 months gap) and then another EUS/FNA 6 months after that. Depending on finding I might be then scanned every year ...

The consultant said that my cea levels were very low (26.9) and benign but at the same time said that cea isn’t a cancer tumour marker ! My amylase levels were confusing him too as those are atypical for IPMN (63).

Any suggestions on what is CEA really ( dr google has been all over the place) and if indeed a low CEA means that my cysts are not mucinous , then what are they ? I know you wouldn’t know just having a fun vent

Consultant thinks now that my pancreas might have a disease that generates simple cysts but as they can’t prove either belief we will proceed down the path of IPMN monitoring, which to be honest it’s not a bad result at all. I prefer been monitored than not 🙂

I appreciate this rather interesting update, @mariouk. I checked on a U. S. website that gives information on lab tests. Here is the link where you can find information about the CEA test, https://labtestsonline.org/tests/carcinoembryonic-antigen-cea.

So, let me be sure I understand. You need to decide on having an MRCP in order to more clearly define that pancreatic cyst disorder. Is that correct?

Hey @hopeful33250 (Teresa)..

I really need to stop updating you so late at night as I am too tired and make no sense.

The doctors will continue treating me as an IPMN patient as they can’t be 100% certain what my cysts are. By treating me as an IPMN patient we are playing the safe game. I am having an MRCP because thats the general recommendation to my size cyst (scans every 6 months) alternating between MRCP and EUS/FNA.

In regards the CEA , mine was not collected through blood but it was collected through pancreatic fluid. After my badly written msg last night , I searched the Internet and it seems that they are two types of CEA which have led to the confusion.

In a nutshell I was hoping others had their CEA measured using FNA and not through bloods so we can compare values 🙂

I will , like always, keep you updated and please do tag me if I can help others with IPMN but there is a good chance I will be quiet for a while, until the next scan, nothing personal 😉

Mario

Thanks for the added information, @mariouk, I hope that others may be able to help you with your question about CEA measurements.

Hello. I had a distal pancreatectomy in January I had a side branch IPMN with high grade Dysplasia in a tail of my pancreas. No cancer was found. I also had my spleen removed. I am 54 years old. My next MRCP is in January or February 2022. I’m concerned because I feel there is something more the doctors could be doing now but they don’t know what to do. What I mean is the remnant pancreas the head and body are at risk for another IPMN or cancer. Also I understand the average time that another IPMN will appear is 24 months to 10 years. I’m scared. I had thyroid cancer when I was 23 they removed my thyroid, lymph nodes and some connective tissue but then they followed up with me drinking radioactive iodine for anything microscopic in my body and they saved my life. They save my life again removing the IPMN cyst, but Is there any research going on or a specific doctor I could contact that once an IPMN is removed, they could give something to you to kill anything microscopic? Since IPMN is a field defect and A precursor to cancer are there any doctors working on trials or experiments I could be a part of?

Mario, I’m not a doctor but I had I had an IPMN cyst removed from the tail of my pancreas in January. Before that I had an EUS/FNA. CEA measurements indicate If your cyst has mucin in it or not. It doesn’t tell you whether or not you have cancer. A high CEA from the cyst itself means the cyst has mucin in it. A low CEA means your dealing with another type of cyst. It really doesn’t matter the CEA number. I believe if it’s over 192 then it’s considered elevated. Mine was in the thousands but I didn’t have cancer. I had high grade dysplasia. I think you might be confusing to CEA levels in the actual cyst verses CA 19-9 which i believe is a blood test to search for pancreatic cancer

Hello @carlz and welcome to Mayo Clinic Connect. Your concern about IPMN is understandable. I've also been diagnosed with IPMN and I have had a EUS and follow-up MRIs for a number of years. Having had a history of carcinoid cancer of the upper digestive tract, I do understand your concern. Do you have a lot of symptoms that are bothersome to you now?

You said in your post, "No cancer was found." That was certainly good news! Regarding following up sooner than your next MRCP in 2022, you might contact your doctor's office (through the patient portal or through a phone call) and see if you could have blood work done to check on the pancreas functioning. Perhaps that would give you some peace of mind.

In the meantime, here is some information about IPMNs from Mayo Clinic's website, https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/more-data-needed-to-guide-pancreatic-cyst-management/mac-20430487.

If you feel a need for a second opinion, I encourage you to do so. It is important for us all to be our own advocates in the matter of our health care. Have you considered making an appointment at a Mayo Clinic facility? There are three in the U .S. One in Minnesota, Florida, and Arizona. Here is information regarding making an appointment, https://www.mayoclinic.org/appointments?mc_id=us&utm_source=connect&utm_medium=l&utm_content=discussion&utm_campaign=mayoclinic&geo=national&placementsite=enterprise&cauid=101653.

I hope that you can resolve the uncertainly you feel about follow-up treatment. Will you keep in touch and post again?

Hi @carlz first of all I am sorry for what you are going through and I do very well understand the fears as I am the author of the post. To help you, I would like to politely challenge you if thats ok 🙂 . As well I do apologize in advance if my 1 point has offended anyone.

1. IPMN are NOT definite pre-cancer indicator at all. They are indeed cysts that can carry a risk but they are not cancer or mean they will turn into cancer. If that was the case, pancreatic cancer would have been the most common cancer and by far the largest death cancer cause. Because PC is one of the less common cancers, is why unfortunately it does have such a low survival rate as there has been less focus, financial investment, etc.
2. I could be mistaken but there isnt any certainly that indicated that IPMNs come back. I am member of a Facebook group that focus on IPMNs only and 99% of the members there havent had new IPMNs appear (over 1000 members)
3. Precursors are indeed a weakness regarding IPMNs and if I may say you are a good example as the docs took a calculated risk to undertake the surgery and now they know it was not cancer. It sucks that we can land and communicate with robots in Mars but we dont have a definite 100% indicator if a specific IPMN can turn or not. It sucks !

Again great news that you didnt have cancer and you most likely never do from an IPMN. You are young and you are under great medical care and you have options. You are an inspiration to people like myself as you have had the operation and you are doing well! I am trusting my medical team that they changed their view from lets remove your whole pancreas to you are now a very low risk. Will I ever know for sure if that was a stupid or an clever decision I dont know and I hope I will never find out?

The mojo of the Facebook group is that "You will die with an IPMN in you but not from the IPMN"

I agree. My friend had IPMN removed thru Whipple procedure last year. He
had a hernia which is not uncommon afterward. Second surgery needed all
successful no cancer. He is very well now and out on his boat like usual.
It is far better to know for sure....always listen to your body!