the Urgency of Monitoring Polycystic Liver and Kidney Disease

Polycystic liver and kidney disease

Dr.
Chen: Hello! My father (86 years old) was hospitalized in early January this year due to gastrointestinal bleeding and received treatment in the emergency room of a hospital in Taipei.
His condition improved, and he was discharged a week later.
During the emergency visit, an ultrasound and MRI were performed, which confirmed the diagnosis of polycystic liver and kidney disease.
Additionally, two tumors were found in the liver, measuring 6.7 cm and 4.3 cm, with one of them being vascularized.
Since the doctors recognized that my father has congenital polycystic liver and kidney disease, they did not recommend immediate intervention but suggested monitoring instead.

Currently, the new situation is that on January 26, my father had tumor marker tests, and the CA19-9 showed a significant change compared to January 11.
It increased from 91.7 U/ml to 225.9 U/ml.
Fortunately, the other two markers remained within the reference range (alpha-fetoprotein: initially 1.65, later 1.10; CEA: initially 3.47, later 2.73).
My question is how should this change over a short period of half a month be interpreted? Additionally, how urgent is the need for medical attention? Is it necessary to travel from the south to Taipei for immediate care, or even hospitalization? (Overall, my father's physical condition is relatively good at the moment, with all signs normal and no abdominal pain.) Thank you for your valuable time and response! Yang Wenyin

Yang, 40~49 year old female. Ask Date: 2005/02/07

Dr. Chen Jingwen reply Internal Medicine

Hello! 1.
Polycystic liver and kidney disease is a genetic condition, and it is recommended to follow up with regular check-ups.
2.
CA 19-9 is associated with gastrointestinal tumors such as those in the stomach, intestines, and pancreas, so it is advisable to consult a gastroenterologist for further evaluation.
Thank you for your inquiry, and I wish you health and happiness!

Reply Date: 2005/02/07

More Info

Dear Yang Weny,
Thank you for reaching out with your concerns regarding your father's health, particularly in relation to his polycystic liver and kidney disease, as well as the recent changes in his tumor markers. I understand that this is a challenging time for you and your family, and I will do my best to provide clarity on the situation.

Firstly, the increase in the CA19-9 tumor marker from 91.7 U/ml to 225.9 U/ml within a short span of two weeks is significant and warrants careful consideration. CA19-9 is often associated with pancreatic and biliary tract cancers, but it can also be elevated in other conditions, including liver disease and certain benign conditions. Given that your father has a history of polycystic liver disease and the presence of tumors in the liver, this change could indicate a progression of the underlying condition or a response to other factors affecting his liver health.

In terms of urgency, while your father is currently asymptomatic and in relatively good health, the notable rise in the CA19-9 levels suggests that further evaluation is necessary. It is advisable to consult with his healthcare provider as soon as possible to discuss the implications of this change. They may recommend additional imaging studies, such as a CT scan or MRI, to assess the liver tumors more closely and determine if there are any changes in size or characteristics that could indicate malignancy.

Regarding whether it is necessary to travel from the south to Taipei for immediate care, this decision should be based on the recommendations of your father's primary care physician or the specialist managing his case. If they feel that the situation is stable and can be monitored with follow-up appointments, it may not be necessary to rush to a different facility. However, if there are concerns about the tumors or if there are any new symptoms that arise, such as abdominal pain, jaundice, or changes in appetite, then seeking immediate care would be prudent.

In terms of monitoring polycystic liver and kidney disease, it is essential to have regular follow-ups, especially given the presence of liver tumors. The frequency of these follow-ups can vary based on the stability of his condition and the findings from imaging studies. Generally, patients with polycystic liver disease should have annual imaging to monitor for changes in cyst size or the development of new lesions.

In summary, while your father's current health status appears stable, the significant increase in the CA19-9 marker is a red flag that should not be ignored. It is crucial to have a thorough discussion with his healthcare team to determine the best course of action, including the timing of any necessary imaging studies and the frequency of follow-up visits. Keeping a close watch on his condition will help ensure that any potential issues are addressed promptly.

Thank you for your thoughtful questions, and I wish you and your family the best during this time. Please do not hesitate to reach out if you have further concerns or need additional information.

Best regards,
Doctor Q&A Teams

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