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

@erinmck My understanding is that the risk of a EUS biopsy causing cancer spread is well under 1%. If your research suggests otherwise, please share your resource. I want to read it. Thanks. I learn something new here from others every day. What other options do you have besides the EUS biopsy? It becomes a risk/reward decision. Diagnosing and treating cancer unfortunately has a lot of those. Has your brother had any genetic testing to determine if you two might have a mutation that predisposes you both to cancer?

@tomrennie thanks for the reply!
Yes, I guess I’m making myself anxious from going down a rabbit hole on the internet. My main concern is allowing a biopsy when the doctor does the EUS. My brother is currently battling prostate cancer and strongly believes biopsies do more harm than good, although I know a doctor won’t be able to make an informed decision without one. I’ve done my own research and according to a cancer organisation, whilst rare, cancer can be spread through tumour seeding as a result of a biopsy. I’m petrified that if my lesion were to turn out to be benign, I might be jeopardising myself with a biopsy, as my research also suggests that a lesion with the characteristics mine has, has the potential to become malignant even if initially determined as being benign.

@erinmck Hi and welcome to Mayo Connect. First off, don't get too far ahead of yourself. Diagnosis and developing a treatment plan is a process. You have to work your way through it. Second, I understand the anxiety. Where are you reading about the horror stories on an EUS? I have had a few without problems. Make sure that you are getting your information from credible sources. There is a lot of misinformation on the internet and AI isn't always accurate. Third, take a deep breath. Folks on Mayo Connect are here to learn and share together. We are a community. I have learned so much from others. How are you feeling overall? What three things are you most concerned about?

Hello everyone, I know this is a relatively old thread but I’m currently awaiting further tests for a 1cm BD IPMN with worrisome features and symptoms. So far a CT scan and MRI have picked up the lesion and flagged it as having thickened walls and enhanced on scan images. I also got the results of a CA 19.9 blood test today - it was up in the 30’s but still just within the “normal” threshold. Next step is a PET scan, EUS and further blood work. I haven’t slept for about a week with the anxiety of the unknown. I’m also very worried about allowing a biopsy during the upcoming EUS as I’ve heard horror stories about lesions then going on to become malignant and/or metastasise. Anyone have any words of wisdom or experiences and advice? Thanks, Erin

I have had a BD-IPMN since 2015 (Mayo). I have had MRCPs and labs every 6-12 months. The cyst started out 1.2 cm. It is now 2.3 cm. My CEA is 3.8, my CA 19-9 is 70 (doubled since 2022)). However, there is no evidence of worrisome features on EUS X 3, the last one being a year ago. I do not have any clinical symptoms of PC. I am being followed at Duke by GI oncology. My next MRCP and labs are in August. Hopefully, the MRCP will show no growth of the cyst and my labs will be stable.

Hello @atlmike21 and welcome to Mayo Connect. I am always pleased to hear members being proactive about their health care. As you said in your first post, "I want to make sure I find the best doctor..."

I have had several IPMNs for several years (10 plus years) with regular follow-ups and no changes in the amount nor size. A lot of members are like myself and have not had PC develop. However, you are wise to follow up. You said that you have a consult with a surgical oncologist. Was this doctor referred to you by another physician?

I also have discomfort in my ribs on the right side and some down in the right side of my stomach but I'm not sure if it's related.

I just discovered, after having a follow-up to an ultrasound that showed liver hemangiomas, that I have a BD-IPMN of 1.4 cm. It doesn't have concerning features or HRS, but I am really concerned. Like others have mentioned here, I have seen all sorts of different odds on whether these could develop into PC and I'm honestly pretty scared. I have a consult with a surgical oncologist next week.

It seems like these things almost always grow and there is a chance of developing more. I'm honestly not sure what to think about my prognosis. I want to make sure I find the best doctor but that is also hard to know.

I still feel the same with the same GI symptoms- nausea, indigestion, and sick stomach, but I guess mentally I feel a bit better.
Thanks for asking.

I appreciate the update, @cjmchicago. It sounds as if your doctor is being thorough as he wants to do another MRCP in a year.

How are you feeling?