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Ductal adenocarcinoma, colloid (mucinous) type

Pancreatic Cancer | Last Active: Dec 30, 2023 | Replies (24)

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@capricorn24

We are actually located in Northern Europe and unfortunately we don’t have centers of excellence here. However, my mother’s oncologist has worked in the US for some time.

Gencitabine has not been discussed. Is it possible that Folfirinox might have a greater effect after 12 doses, maybe it just hasn’t had enough time to have the full effect?

My mother experienced ascites and it’s only then she felt that something’s wrong and turned to the doctor.

From my mother’s experience I have understood that CT is not very reliable and every doctor interprets the results differently. When she had the first CT, the doctor in charge said that there is one met in one lung and that there are benign hemangiomas in the liver. Her first oncologist said based on the same CT that there is no met in the lung. Then she was given another oncologist, who said based on the same CT that there are mets in both lungs, liver and lymph nodes (which turned out to be not the case regarding the lymph nodes).

To conclude, my mother has received very mixed information and we feel confused. She sees her oncologist in every two weeks for about 5-10 minutes. Unfortunately she doesn’t really want to ask any questions. I think it’s because she’s afraid she’ll be given more bad news. I just wish we knew more about the mucinous type and how it can change my mother’s condition.

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Replies to "We are actually located in Northern Europe and unfortunately we don’t have centers of excellence here...."

I love that your mom is feeling better and even shoveling snow! I love shoveling snow (or at least I used to). You're right--it can be very tricky to get consistent info from all the MDs involved in your mom's case. I know all of the radiology reports on my CT scans seems to vary in thoroughness and detail. You're also correct in that CT scans can't see everything. My oncologist told me the scan couldn't spot anything less than 1.5 cm; I've seen online that it can't spot anything less than 1 cm. That could potentially skip some mets. It also seems like radiologists interpret scans differently, and it's difficult to get any consistency. So I understand your frustration.

I'm glad her MD worked in the United States; that might help with regards to training and experience. Can her MD consult with his/her former colleagues in the US? Or is there any way your mom can travel to another country to obtain a second opinion? Perhaps she could get CDs of her scans and consult with doctors elsewhere to see whether she can gain some clarity about her situation. In any event, I would be thrilled with what appears to be her progress in terms of comfort and energy level. I hope your online searching yields more info on the mucinous type. Best wishes!