Pancreatic Cyst 1.2 cm - what next?

bunnybear1102

I’ve just been through Ct/MRI and found a lesion/ cyst 1.2 x 1.2 on the head of the pancreas, close to duct. The cyst is a IPMN. I’m reading much to get up to speed for my gastroenterologist appointment on next steps. Can anyone advise as to how to proceed from here for optimal health outcome? Do I get into a specialist clinic right away? I live in No CA.

I’m female 68 and in good health except for GERD and have lost 10 lbs weight due to poor appetite and worry (?)

Daffodil65

Hi,

Have you had a biopsy of the lesion/cyst? I was under the impression that they need to do a biopsy to make a positive diagnosis of the type of tumor. I would ask to find out if they should do a biopsy before starting any treatments or surgery. They may opt for chemo first, then surgery later, to make sure that there aren't any malignant cells traveling to other parts of the body to cause this to spread before they remove the cyst. The gastroenterologist is likely to refer you to an oncologist. Check with PanCan.org to see if they have information about oncologists who specialize in pancreatic tumors... (pancreatic cancer action network... they have been very helpful in providing information for my husband's cancer decisions about doctors.)

IPMNs can become malignant, so your doctor may suggest surgery. If so, the Whipple surgery is most common but it removes the lower part of the stomach in addition to the head of the pancreas and the duodenum. You might want to ask about a Partial Whipple surgery, which isn't as common but it preserves the lower part of the stomach and isn't as difficult to recover from. Check for surgeons in your area who do this procedure... contact PanCan.org and ask for all of the surgeons that do Whipple and Partial Whipple procedures in your area and, if possible, go with the surgeon who performs the highest number of surgeries per year (they have the most practice and are likely to have the best outcomes.) PanCan.org helped us find the best surgeon in our area and then he worked with the oncologist we were able to get in with right away through our local healthcare system and cancer clinic. We chose not to go with a teaching institution for the surgery because we wanted to be sure that the surgeon performed the surgery and not a medical student who hasn't has as much practice.

My husband had to have 2 biopsies before they could make a positive identification of the type of tumor and it was adenocarcinoma. The first biopsy suggested an IPMN but that was incorrect. We opted to have genetic testing done so they could get better information about what types of treatments would work best in his case. He is going on 3 years since his diagnosis and is receiving treatments that are not approved for pancreatic cancer but they show promise and he has exhausted all of the approved treatments. Our next step may be clinical trials.

I hope that your cyst is not malignant and they can treat you with non-invasive methods that will give you peace of mind and a long healthy life. Best wishes!

cmcarruthers1977

I would suggest getting ahold of Dr. Trusty's at the mayo clinic in Rochester Minnesota

bunnybear1102

Thank you for your responding. 🙏

I’m scheduled with local gastrointestinal that specializes in EUS for an EUS at John Muir Hospital. Next step to identify for type and they may do a fine needle aspiration. I’ve contacted Mayo in Rochester and they have my first phone spot on Jan 15th before appt in person. I opted to do the EUS local as sooner than later so I hope that is okay.

Daffodil65

I'm glad you are getting in soon for your procedure. This was the first step that my husband took. During the first biopsy, they were not able to make a definite diagnosis of the type of cancer and he had a second biopsy done at a different location. During the second biopsy, the pathologist was studying the samples right there as the procedure was done, so they were able to make a definite diagnosis that time because the surgeon was able to get more samples if the first ones didn't have enough cells (I hope that makes sense). You may want to ask if it is an option for the pathologist to be there to make a diagnosis.

I think that the sooner you get the biopsy and the results back, the better. Set up appts as quickly as possible because it is taking longer to get things scheduled now. Best wishes with your procedure!

bunnybear1102

Thank you so much! I’ll call and ask about the pathologist, good info.

I found Dr Truty on Mayo site. I’ll be sure to ask about him when they schedule my in person appt in Rochester. He is also affiliated with MDAnderson in Houston which is another high volume pancreas cancer treatment center. This really made me feel I was connecting to the right clinic (Mayo).

bunnybear1102

https://csn.cancer.org/discussion/comment/1711384#Comment_1711384

I found Dr Truty on Mayo site. I’ll be sure to ask about him when they schedule my in person appt in Rochester. He is also affiliated with MDAnderson in Houston which is another high volume pancreas cancer treatment center. This really made me feel I was connecting to the right clinic (Mayo). Thank you!!