Cancer Antigen 19-9

DeniP
DeniP Member Posts: 5 Member
edited November 2023 in Pancreatic Cancer #1

Hello,

My husband was recently diagnosed with pancreatic cancer. He presented with bad gastritis and quickly became jaundice. He was admitted to the emergency room where several tests revealed a mass at the head of his pancreas. There does not seem to be evidence of spread. The recommendation is for 3 months of chemo (on 3 different drugs) to shrink the tumor, then surgery to remove the tumor followed by 3 more months of chemo. His CA 19-9 level is over 2,000. Should we be concerned about this tumor marker on its own? I have read conflicting things. Has anyone had success at shrinking the tumor so that it can be removed?

Any insight would be so helpful!

Comments

  • Daffodil65
    Daffodil65 Member Posts: 19 Member
    #2

    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.

  • DeniP
    DeniP Member Posts: 5 Member
    #3

    Thank you so much for your response! The tumor in my husband’s case is on the head of the pancreas. As far as they could tell so far, blood vessels did not seem to be an issue. Hopefully that is the case. I am so sorry your husband has gone through so much. It must be so difficult on you also. Take good care and wishing you much success and healing ❤️‍🩹

  • Daffodil65
    Daffodil65 Member Posts: 19 Member
    #4

    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.

  • jdeesigns
    jdeesigns Member Posts: 5 Member
    #5
    https://csn.cancer.org/discussion/327113/cancer-antigen-19-9

    Sorry to hear about your husbands diagnosis. I hope he’s made some progress since you first wrote this. My 72 year old husband was diagnosed with this too. He had been receiving chemo to shrink the tumors and provide pain relief (if they shrink) Operating isn’t an option , as it’s spread and he also has an unrelated Gastric cancer . They said they would do a scan after 3 months of treatments to see if the tumor has shrunk. His numbers continue to be above 2000…down just a little from July. Has your husband had a pet scan to see if it’s spread? Have you been to a hospital that has done a lot of operations on the pancreas? How olD is your husband? My husband didn’t think he could make it through chemo then surgery then more chemo. Good luck with whatever road you travel down

  • DeniP
    DeniP Member Posts: 5 Member
    #6
    https://csn.cancer.org/discussion/comment/1710854#Comment_1710854

    Hi, I am very sorry to hear about your husband’s condition and wish you both the best. My husband is 51. A CT scan and endoscopy revealed the mass on his pancreas. Also, that there was not any evidence of spread. He has completed 4 rounds of chemo. He has two more to go before they do another scan to see if it has shrunk enough to surgically remove it. That scan is scheduled for Jan 3. My husband’s CA19-9 numbers have remained stable with no real changes. The docs don’t seem concerned about that at this point. He is undergoing care at Duke University Hospital in North Carolina. He is also working with a nutritionist to be sure he is getting the nutritional support he needs in order to heal. He is also working with a cancer coach who has survived stage 4 pancreatic cancer for over 25 years. She’s got great insight and wisdome around the topic. He is also using cannibis for side effects of chemo. It takes care of the nausea and brings back his appetite. The nausea meds they prescribed him have side effects that make him very uncomfortable. Wishing your husband a good result when they do the next scan.

  • jdeesigns
    jdeesigns Member Posts: 5 Member
    #7
    https://csn.cancer.org/discussion/comment/1710857#Comment_1710857

    There’s the difference between going to a place like Duke for treatment! We had a dietitian chat with us during treatment about how he should just eat small meal’s frequently. Certainly there must be foods that are helpful (if he’ll eat them) Thanks to cannabis he’s had General Tsaos chicken and a chocolate ice cream/ensure milkshake. Sounds like you are in good hands with a cancer coach. Our hospitals here are notoriously horrible, so we went 3 hours away from the tests and diagnosis. Getting treatments locally. I just don’t feel like anyone had time to sit us down and talk with us . And this is why I google!.

    Is recreational cannabis legal in your state? Thank bid we can get it here legally… and it’s the only thing that helps the stomach cancer pain, and increases appetite somewhat. I hope your husband continues to improve!

  • DeniP
    DeniP Member Posts: 5 Member
    #8
    https://csn.cancer.org/discussion/comment/1710859#Comment_1710859

    Where do you live? It is so difficult when you have to travel for good medical care. I am sorry about that. We have cannibis dispensaries near us. It is legal to some extent but not completely. Luckily, what helps my husband is readily available and legal. Yes, nutrition is very important. If you can get your husband to consult with a nutritionist, it will help him build back his broken immune system. Wishing you all the best.

  • jdeesigns
    jdeesigns Member Posts: 5 Member
    #9
    https://csn.cancer.org/discussion/comment/1710860#Comment_1710860

    We are in NY and have great dispensaries all around. The closest cancer center is 3 hours away, but we couldn’t drive back and forth there twice a week .

    I WISH my husband would talk to a nutritionist! He’s very resistant to any helP and has basically given up…

    I think being 51 or 72 makes a huge difference in how effective treatment is.

    i wish he would talk to me about what’s going through his head… I can’t even imagine.

    Have you had serious discussions with your husband?

    we’ve briefly chattted about where we wil sprinkle his remains and what kind of party he wants to have afterwards… He’s afraid to show emotions and doesn’t want to see me cry. So we end up bickering, like we have all the time in the world!

  • DeniP
    DeniP Member Posts: 5 Member
    #10
    https://csn.cancer.org/discussion/comment/1710861#Comment_1710861
    https://csn.cancer.org/discussion/comment/1710861#Comment_1710861
    https://csn.cancer.org/discussion/comment/1710861#Comment_1710861
    https://csn.cancer.org/discussion/comment/1710861#Comment_1710861

    It’s great you have access to dispensaries near you. It is so much easier to get access to cannabis than it used to be. The more folks who have discovered how effective it is at combating pain and side effects, the more main stream it becomes. My husband is fairly open about his situation. Mostly we discuss what is next and what more he can do to heal. He has a fairly positive attitude about his situation.

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