Cancer Antigen 19-9

Hi,

I'm so sorry that your husband is going through this and I'm sorry that you are, too. My husband has been receiving treatments for pancreatic cancer for over 2 years and we've had a lot of questions. Here is what has been explained to us, concerning CA 19-9...

The surgeon who performed nano-knife surgery on my husband said that CA 19-9 is an antigen that is present in the body but is typically elevated when a patient has cancer of the digestive system. He said that levels in a person's blood are very individualized. So some people may not have any cancer in their system but the levels of CA 19-9 are elevated. However, in general, high levels of CA 19-9 indicate the presence of cancer and inflammation in the digestive system. So, it is definitely a reason for concern, but it isn't the only thing that they look at.

You asked if anyone has had success in shrinking their tumor with chemo so that it can be removed and the answer is... yes, many people have had success with this plan. My husband's tumor was encircling two major blood vessels and it did not shrink enough to be removed but your husband's case may be very different. Did the doctor say that the tumor was growing around any major blood vessels? If not, your husband has a very good chance of success with chemo followed by surgery and more chemo. If the tumor is surrounding blood vessels, he may need more chemo to shrink it than the 3 months.

I highly recommend contacting PanCan.org (Pancreatic Cancer Action Network... you can find them online)... either call them or start a chat with them and they will send you helpful information for free. They also will send you a list of surgeons that perform the Whipple procedure in your area (or wherever you want to go)... look for the surgeon who has performed the largest number of these surgeries because they are likely to have the highest success rate. Also, check to see if anyone in your area is experienced with the partial Whipple procedure... as this preserves most of the stomach and has a shorter recovery time. (In the Chicago area, where we are, Dr Billimoria at Northwest Community Hospital is experienced with this procedure and nano-knife surgery - an ablation technique that can kill the tumor if it is not resectable.)

I hope that this is helpful. Best wishes to your husband and to you.

Thank you! We are still hopeful for the future and we're staying positive. There are new treatments being tested all the time... and we are looking at some clinical trials. The doctors and nurses have been very helpful and upbeat.

With the tumor in the head of your husband's pancreas, the Whipple procedure is usually performed. It's very good news if they did not tell you that the tumor is around blood vessels. The reason they told us they start with chemo first before surgery in a case like this is to try to kill any cancer cells that may have moved outside of the body of the tumor. This helps to prevent the cancer from spreading even though the patient has had the tumor removed. So it sounds to me like your cancer team is using the same logic and that is in agreement with our cancer team.

Has your husband started treatments? Did he have a biopsy taken? If he is still waiting to have a biopsy, it would be a good idea to ask the doctor if it is possible to have a genetic test done on the biopsy sample. You may have to pay for this if your insurance won't cover it but it could potentially give them information on which chemotherapy or immunotherapy options might be most effective against your husband's tumor's genetic markers. I'm pretty sure our insurance covered all but a small portion. Now we have a doctor from a research facility with targeted treatments that offer us more hope than we would have had if the genetic testing had not been completed.

If he has already started treatments, you could ask about having the genetic testing done when the tumor is removed... to offer treatment options if the cancer ever returns.

One last thing... I think it is worth mentioning that the partial Whipple procedure is much easier for a patient to recover from if the surgeon is experienced with the procedure. Another bit of advice we were given... try to pick a surgeon who is not working at a teaching hospital. You want an experienced surgeon to perform the surgery, not a medical student who is learning.

And most of all, write down your questions and take them with you to the appointments. Don't be afraid to ask questions or get second opinions. Check to see if there is financial assistance from drug companies if your insurance won't cover something.

PanCan.org was a huge help to us and to be honest, I don't know if my husband would still be here if we hadn't contacted them and found the surgeon through them. Also, they sent us so much info on clinical trials and that is how we found the doctor helping us with the new treatments. That has made a huge difference in our journey.