Elevated CA 199 - What next?

[Herrie]

Hello,

I am happy to have found this site. Thank you all for being here.

I had three CA 19-9 tests, and the last one was significantly higher than the previous test:

December 2020.     CA 199 @ 35 kU/L.
February 2021.       CA 199 @ 38 kU/L
September 2021.    CA 199 @ 113 kU/L

 

I received these results directly from the lab. The prescribing surgeon hasn’t contacted me. If he doesn’t call me in the next few days (he didn’t call me after the first two tests), I plan to call him.

 

>> To prepare for the consultation, can anyone tell me what additional tests I should request and what my concerns should be?

 

Here is my brief medical history:
 

I am 79 yo and had a pancreatitis attack In August 2018. The CT scan revealed a 1.5x1.6x1.7cm cyst in the pancreatic tail. A subsequent US-guided biopsy came back negative. Since then, I have had three MRIs, the last one in October 2020, that showed no change. A CT scan in February this year showed the pancreatic cyst had diminished by 20%.

 

I have another MRI scheduled for November 24 this year. Is this too long a wait? During the pandemic, it is difficult to get an MRI.

 

During the last eight months, I developed muscle pains around the chest and ribcage which at first was attributed to recent open heart surgery. Since it continued to get worse, I last week stopped taking pravastatin to see if it could be a side effect of this drug. I wonder if an adverse reaction to statin could have elevated my CA 19-9 reading. Otherwise, I feel great and don’t seem to have any of the pancreatic cancer symptoms I see listed on the web.

 

I am not sure where to start this journey, and any comments would be much appreciated.

 

Be well!

Herrie

[Vasil]

Dear Herrie, ca 19-9 can be elevated for a variety of reasons even in healthy people. There is nothing to worry about. This marker has no diagnostic value. Best wishes

[PCUK Ellie]

Hi Herrie - I'm sorry no one has yet responded to you, and hope that people will share their own experiences in time. There is lots of information on the Pancreatic Cancer UK website about the process of diagnosing pancreatic cancer, including information about diagnostic tests, and tips for speaking with healthcare professionals about any worries you have. If you have concerns, feel free to reach out to the specialist nurses on our Support Line, who will be happy to talk with you. And please feel free to keep us updated here, if you wish to. All the best.

[PCUK Ellie]

Apologies @Vasil, you must have responded a moment or two before me!

[Herrie]

Thank you for your kind reply and links, Vasil and Ellie.

 

You reassured me a little. Even though I don't have any symptoms that seem related to Pancreatic cancer, it is on my mind because several years ago I had a single brief pancreatitis attack. The surgeon I saw wanted to take out half my pancreas, spleen and gallbladder, "just so that I couldn't develop PC" (his words). I refused surgery and waited for a US guided biopsy of the cyst that seemed to have triggered my attack. It came back negative, and so did the bi-annual and later annual MRIs I have had since (the cyst actually shrunk 20%). But even so, the elevated CA 19-9 made me wonder if I should have had the surgery.

 

I am waiting for another MRI in two months and a subsequent doctor consultation. Things are bogged down because medical staff are overloaded with COVID-19 patients.

 

FWIW, I have a number of other medical problems that I think could increase the CA 19-9 - If I find out the cause I will share it.

 

Thank again for your replies, and for letting me spill my concerns. It always helps to share!

 

Have a great day, be safe, and stay healthy!

Herrie

[Herrie]

Hello,

 

Just in case someone else shares my CA 19-9 experience I report how this ended.

 

A day or so after September 17, 2021, the day that my CA 19-9 was 113 kU/L, I consulted my cardiologist and stopped taking Pravastatin to try and get rid of muscle pains. To encourage muscle healing I increased my D3 from 1000 to 2000 units/day and my Coenzyme Q10 from 100 to 400 mg/daily.

 

Two months later, on November 16, 2021, I had another CA 19-9 test and my CA 19-9 had returned back at 40 kU/L. This is nearly the same I had one year ago. I can't help wonder if the above new medicine regimen helped. If you are having unexplained elevated CA 19-9 values that worry you, you may want to consult your doctor to see what he thinks about trying something similar.

 

On November 20, 2021, I had another MRI that came back negative. The cyst had not changed over about three year. In fact I discovered an old 2014 report that showed the cyst hadn't change since then. My next MRI will be from two years from now.

 

Unrelated, but also good news; my muscle aches have diminished significantly. And my Cardiologist wants me to go back on pravastatin (my LDL rose 75%!). Doing some research I discovered that Simvastatin can reduce the risk of Pancreatic Cancer. Below are a few random papers; there are more. I am no doctor and I am not giving medical advice.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5403279/

https://journals.lww.com/pancreasjournal/Abstract/2019/02000/Statin_Use_and_Risk_of_Pancreatic_Cancer__An.2.aspx

https://www.nature.com/articles/s41598-017-13430-z

https://pubmed.ncbi.nlm.nih.gov/30314951/

 

I am already on a mini-aspirin a day and will ask my cardiologist whether I can switch to Simvastatin.

 

I am very aware that many of you are facing much more difficult decisions. My case is almost frivolous but still, I hope this information may be of interest to some of you.

 

Best wishes to all,

Herrie