Does having several IPMNs increase the chance for malignancy?

Posted by lynn2106 @lynn2106, Nov 14 9:59am

Hello - I am a 55 yr old woman who does not have cancer, however my mother did pass from pancreatic cancer a few years ago.
I am just looking for anyone who has any experience with my current situation. And I am sorry if this is brought up ad nauseum, but trying to research, and perhaps make myself a bit less crazed than I am currently.

This past May, I had a fall and had a CT scan which incidentally found a 1.2 cm cyst that "communicated with the main duct". I recently had an EUS and they found 3 more - so total I have Neck: 12 mm × 5 mm
Head: 8 mm cyst
Body: 5 mm cyst
Tail: 3 mm cyst
Now, my question is this - is it normal for the 3 other cysts not to show on the original CT scan or can these be newer cysts? And due to the fact that my mom passed from pan can, does having more IPMNs make any difference in the chance for them to turn malignant? Yes, I realize all these can be discussed with my doctor, but I get somewhat nervous and can't think until I leave the office.

Sorry for the repeated questions and I am very sorry for all of you suffering with this disease.

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

I had a CT scan with contrast with an 8 mm cyst 2 1/2 years ago. It was recent MRCP which picked up the 8mm cyst from 2 1/2 years ago. My MRCP showed a pancreatic cyst of 13mm

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Hello @lynn2106 and welcome to Mayo Clinic Connect. I can understand your concern about these recently found pancreatic cysts, especially given your mother's history with pancreatic cancer. My pancreatic cysts were found over 15 years ago. I had a similar anxiety response, as I have a history of a rare form of cancer in the duodendal bulb (near the pancreatic bile duct). I also had an EUS, which showed an IPMN, and I was told "not to worry." That turned out to be good advice, as the cysts have remained the same over the years. I have three cysts that have remained the same, and a few smaller cystic lesions that are also unchanged. Here is some information about size and location from my last MRI report:
pancreatic neck, 0.5 cm, unchanged
pancreatic body, 0.8 cm, unchanged
pancreatic body, 0.9 cm, unchanged
A few smaller cystic lesions are unchanged. No internal nodular enhancement.

As in your experience, the first evidence of these cysts was on a CT scan for an unrelated matter. The first few years after the original CT scan, I had MRIs every year. The follow-up is now every other year.

If you are at all unsure about this diagnosis, I suggest you seek a second opinion from a doctor affiliated with a Pancreatic Center of Excellence. Mayo Clinic is one such facility (here is a link with appointment information: http://mayocl.in/1mtmR63.). If an appointment at Mayo is not possible, search for another major medical center in your area, such as a university medical school, or you can contact the National Pancreas Foundation. Here is their website, https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/.

The important thing is to be proactive so you can worry less and ensure appropriate follow-ups. Does this sound like a good plan? Have you had blood work to determine pancreatic functioning?

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I have IPMN but my main duct in the head of my pancreas is dilated to 8 cm. I saw two surgeons. One wanted to remove my entire pancreas. The other in Philly with-amazing credentials he is Charles Vollmer in Penn Med at the Perlman center is going to do a wipple surgery to remove the head of my pancreas in the NewYear. I don't have cancer yet but the cysts I have turned mucinous. Next stage is cancer at a chance of 80 percent. I’m scared senseless but i do not want to die from pancreatic cancer. I have been watched by my gastroenterologist for three years with yearly MRI and endoscopic EUS with biopsy. I had two bouts of pancreatitis in that time and had my. gall bladder removed. Now I’m in AFib and I’m going to have ablation done in December. I have had many blood tests to measure pancreatic function. Good luck to you. This journey is exhausting.

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @lynn2106 and welcome to Mayo Clinic Connect. I can understand your concern about these recently found pancreatic cysts, especially given your mother's history with pancreatic cancer. My pancreatic cysts were found over 15 years ago. I had a similar anxiety response, as I have a history of a rare form of cancer in the duodendal bulb (near the pancreatic bile duct). I also had an EUS, which showed an IPMN, and I was told "not to worry." That turned out to be good advice, as the cysts have remained the same over the years. I have three cysts that have remained the same, and a few smaller cystic lesions that are also unchanged. Here is some information about size and location from my last MRI report:
pancreatic neck, 0.5 cm, unchanged
pancreatic body, 0.8 cm, unchanged
pancreatic body, 0.9 cm, unchanged
A few smaller cystic lesions are unchanged. No internal nodular enhancement.

As in your experience, the first evidence of these cysts was on a CT scan for an unrelated matter. The first few years after the original CT scan, I had MRIs every year. The follow-up is now every other year.

If you are at all unsure about this diagnosis, I suggest you seek a second opinion from a doctor affiliated with a Pancreatic Center of Excellence. Mayo Clinic is one such facility (here is a link with appointment information: http://mayocl.in/1mtmR63.). If an appointment at Mayo is not possible, search for another major medical center in your area, such as a university medical school, or you can contact the National Pancreas Foundation. Here is their website, https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/.

The important thing is to be proactive so you can worry less and ensure appropriate follow-ups. Does this sound like a good plan? Have you had blood work to determine pancreatic functioning?

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@hopeful33250 thank you so much for your reply. My doctor ordered a follow-up in 6mos with an MRI. He said no worrisome features at this time, so I will be patient. Only reason I wasn't is because I wasn't sure why the CT scan only showed the larger one back in May. I read it was because the others were too small. Also, the fact that it wasn't just the one cyst. It's now a few of them. Still small - which I am grateful for. So, I will make decisions to get a second opinion after those results come back next May. hope this makes sense. thanks again for understanding.

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Profile picture for donnavgl @donnavgl

I have IPMN but my main duct in the head of my pancreas is dilated to 8 cm. I saw two surgeons. One wanted to remove my entire pancreas. The other in Philly with-amazing credentials he is Charles Vollmer in Penn Med at the Perlman center is going to do a wipple surgery to remove the head of my pancreas in the NewYear. I don't have cancer yet but the cysts I have turned mucinous. Next stage is cancer at a chance of 80 percent. I’m scared senseless but i do not want to die from pancreatic cancer. I have been watched by my gastroenterologist for three years with yearly MRI and endoscopic EUS with biopsy. I had two bouts of pancreatitis in that time and had my. gall bladder removed. Now I’m in AFib and I’m going to have ablation done in December. I have had many blood tests to measure pancreatic function. Good luck to you. This journey is exhausting.

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@donnavgl wow... so scary. I'm sorry - good luck to you as well!

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Thank you for your well wishes, I need all the positive vibes I can get.

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For those with IPMN’s, consider the following clinical study which recently reopened and is being conducted at many sites around the US.
https://ecog-acrin.org/clinical-trials/ea2185-pancreas-cancer-prevention/
The link on the NCI clinical trials finder site has tot been updated to reflect the trial has reopened for recruiting. I was just at the ECOG-ACRIN semi-annual meeting a few weeks ago where it was mentioned the trial has reopened.
https://clinicaltrials.gov/study/NCT04239573

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Profile picture for lynn2106 @lynn2106

@hopeful33250 thank you so much for your reply. My doctor ordered a follow-up in 6mos with an MRI. He said no worrisome features at this time, so I will be patient. Only reason I wasn't is because I wasn't sure why the CT scan only showed the larger one back in May. I read it was because the others were too small. Also, the fact that it wasn't just the one cyst. It's now a few of them. Still small - which I am grateful for. So, I will make decisions to get a second opinion after those results come back next May. hope this makes sense. thanks again for understanding.

Jump to this post

@lynn2106

Yes, your plan sounds good. It is probably ok to ask your physician if blood work has been done to evaluate pancreas functioning. That might give you more reassurance.

I look forward to hearing from you again.

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Just a comment about asking the Doctor questions---in order to not forget things we want to ask our Doctors, my wife (Stage III pancreatic cancer) and I write down all our questions well before the appointment and finalize the list before the visit. We refer to our written list during the appointment. This has worked very well for us. We also record (with the Doctor's permission) the whole meeting. On an iPhone, you can open Voice Memos and touch record. So helpful to have the recordings. Good luck to you!

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