Anyone have/had BD-IPMN (branch duct intraductal papillary mucinous)?

I guess the problem I have with W&W is that there is absolutely no way to know that it is not cancer without a biopsy. And I certainly want to know if it is cancer before it gets any bigger. The finding was incidental but also a blessing if it is in fact cancer and not a harmless IPMN. Believe me, I would love to just ignore that I have it and go on about my life (except for the 2 scans a year) but I am a nurse and I have seen a lot! And mistakes are made on imaging all the time. Pathology is the only thing that will give me piece of mind. All these doctors keep dismissing it because it is “so small” but I think if it were on their pancreas or the pancreas of their child/wife/loved one they may feel differently.

Thank you for all that!! So sorry to hear about the metastasis and everything you have been through. Sounds like you have found a surgeon you trust and that is my hope for me. I think it makes all the difference.

@pattyclaire , The two genetic tests I'm aware of are 1) Invitae, which detects "germline" mutations you inherited from a parent; and 2) Guardant 360, which detects "somatic" mutations in DNA shed by cancer cells. The Guardant test may detect mutations for which it can't determine the cause (inherited or shed by a tumor), but a positive mutation reported in either helps identify your risk and plan your treatment. I think they both take 2-3 weeks to get initial results, so they can/should be performed while you're waiting for other stuff to get done, if possible.

We'll never know for sure what caused my recurrence. During the Whipple, my surgeon/pathologist saw cancer at the margins, then went back to cut out another half inch of pancreas, which was declared clean. After 3 months of clean scans and blood tests, MRI in the 4th month picked up a new 2 cm "lesion" where the remnant pancreas was stitched in to the old plumbing. Pretty fast growth in 3 months. Two prominent surgeons have told me the intraoperative pathology is not perfect; sometimes malignant cells remain present but out of sight.

I had an EUS biopsy of that lesion 3 days after the MRI, and it was all negative. They reported it as pancreatitis and recommended another blood/DNA test and MRI in 6 weeks. The doctor who took the biopsy was positive he got tissue from the appropriate (4) locations, but another doctor told me the post-Whipple anatomy and the fact the lesion was growing on the outside surface of that plumbing junction made it really difficult to reach.

Anyway, 6 weeks later the DNA and CA19-9 and MRI made it pretty clear the lesion was cancer, and imaging also spotted another metastatic tumor elsewhere in my abdomen. We don't know if that second tumor emerged from something that had escaped before the Whipple or after, but it cancelled any realistic chance I had for a surgical option.

I am not a fan of waiting and watching!

Yes, I still have the IPMN and it is surveilled twice a year by MRI. There is no treatment for shrinking IPM’s…it shrank on its own. It is a BD-IPMN and impossible to biopsy as it is too small and inaccessible. It is causing no issue. To try and biopsy it could result in acute pancreatitis which if it develops to chronic pancreatitis- a known risk factor of developing pancreatic cancer. So the risks far out way any benefit.

IPMN’s were only first discovered in the early 1980’s as a result of imaging by CT scan which was introduced in 1979. IPMN’s are generally found as a result of imaging for an unrelated issue. It turns out many people are unaware they have them including those that received a CT scan. I have five older friends that had abdominal CT or MRI done for issues more related to the intestine and there on the report was noted an IPMN. All were unaware an IPMN was found. Their GI specialist never pointed it out. So the first question I asked each of the five was if there was pancreatitis or pancreatic cancer in the family. Only one had history of pancreatic cancer (her Mother passed from it in her early 50’s).

I arranged an appointment for her with a noted MD in NYC who was a geneticist specializing in this area. Genetic testing was done and it was found she had a Lynch syndrome mutation. That finding led to other family members being tested to assess their risk for colon cancer.

For the first year she was surveilled at 6 month intervals. After that she was checked yearly and now it is recommended every two years. No change has been observed in five years of surveillance. It’s location, appearance and no growth does not warrant biopsy or other aggressive action.

Wow, this is SO helpful and informative!! I wil make sure I get the gene testing. I did not know anything about it until I saw folks talking about it on here. I absolutely do not want to w&w. That is how my sister passed from breast cancer 5 yrs ago. I want to be aggressive because this cancer is aggressive. Did your IPMN turn into a PDAC? That is my fear. It is taking weeks to get scans and get into doctors! This is precious time to me. I feel like nobody is taking it seriously because it is only 1 cm. But I also have tiny “hypodensities” on my liver and spleen that I don’t know what they are. The last gastro told me to do nothing except get another scan in a year! No bloodwork, no MRI/MRCP, nothing. My PCP had to order the MRCP. Now I’m trying to get into 2 different pancreatic centers and they took all my info and said they’d call me for an appt after they’ve “triaged” my chart…. like time is not an issue. I am so frustrated and scared. I know I have PC. I just know. I have every symptom except jaundice. I am a nurse. I just know I have it. So every week that goes by without being under the right surgeon’s care is devastating to me. I’m so sorry for all the negativity. It’s just where I am at the moment. I really appreciate all the info! I will take it all to heart!

@pattyclaire , I'm not a doctor, but someone who experienced recurrence after a clean Whipple for my PDAC. Some of my pre-Whipple MRIs indicated what I vaguely recall as side branch IPMNs (in addition to the main tumor in the head of my pancreas).

My first question for you is whether you've had genetic testing to see if you have any germline mutations (KRAS, BRCA, ATM, etc.) that predispose one to PC or have close family members with a cancer history (particularly those that are genetically similar to PC).

If either of those is true, you should push for quicker/deeper treatment over simple surveillance.

Since my cancer returned first at the Whipple site, my suspicion is tissue that appeared to be cancer-free at the margin either wasn't, or if it was clean at the time, then it simply turned cancerous shortly after the surgery.

Either way, I now consider that my pancreas was basically "defective" at the time and with no potential to get better, only stable or worse.

In either of the two latter cases, I became diabetic (needing insulin) shortly before the Whipple and dependent on enzymes after it.

So, one question you might ask a surgeon or two (please get multiple opinions!) is whether a is a better option for you than a partial, if you have the mutations or family history that increase your PC risk.

Total pancreatectomy would eliminate the chance of ANY pancreas turning cancerous later. Even if it leaves you on insulin and enzymes for life, it will be a longer and more tolerable life than if you're adding chemotherapy or radiation to the mix.

Repeating: I'm not a doctor, but if I knew 2 years ago what I know now, those are tests I would be taking and questions I would be asking.

Best wishes to you!

This is so helpful, thanks! So you still have the IPMN and it has shrunk to 7 mm? Did you biopsy it? Did you take any meds to help shrink it? Are you continuing to monitor it with scans then, and if so how often and what type of scans? Sorry for all the questions! So grateful for all this personal info and education tho!!

Amen

I had a BD-IPMN discovered 5 years ago during a routine surveillance scan as I had the Whipple procedure in 2012. The IPMN measured 8mm and is in the tail of the pancreas. I was familiar with the international guideline for monitoring IPMN’s but because I already had the Whipple for an acinar cell tumor in the head of the pancreas, I went for multiple (4) opinions all covered by health insurance as I wanted to make sure the guidelines fit my situation or if surveillance needed to be customized to fit my situation.

I went to an NCI designated center of excellence in cancer care with a pancreas program that had a surgical oncologist who specializes in IPMN management. Surgery would leave me as a type III brittle diabetic and would need insulin and pancrealipase for life. There was very little risk of it becoming malignant. The last 3 scans showed shrinkage to 7mm.

There is an international study (EA2185) on comparison of IPMN surveillance methods. Enrollment is open to anyone with an IPMN whether a BD or MD IPMN. More information about this surveillance study is at-
https://blog-ecog-acrin.org/now-enrolling-ea2185-trial-to-compare-the-clinical-impact-of-pancreatic-cyst-surveillance-programs/

Thank you so much this is so helpful! So sorry you are going through all this. Glad to hear you have no pain and no complications from surgery. I know it will be tough to get a surgeon to take out a benign cyst but I really do want it out. I will get a second opinion though. Thanks!!