Newly diagnosed pancreatic cancer

Posted by tsacco @tsacco, Jul 11 7:26am

My mom is 81 and relatively healthy, thyroid disease and hypertension, and was just diagnosed with pancreatic cancer in the head of the pancreas. Her CA19-9 was 135 a week ago. She has a biliary stent because the mass was pushing on her bile duct causing her to become jaundiced. I’m not sure what my question is…I’m just so scared. We have an appt next week with a surgeon but I’m not sure she will tolerate surgery or chemo or both. She’s lost a lot of weight the past month. Her MRI did not show enlarged lymph nodes. Is a CA19-9 of 135 real high?

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Profile picture for keepingoptimistic @keepingoptimistic

My wife's situation is similar to yours - 2cm Panceatic tumor wrapped around an artery ,and suspicious liver spots which are possibly (likely) cancerous. Not surgically operable at this time. Don't panic but do act. Get a 2nd opinion at a high volume cancer center, even if it is a virtual visit. There are many in the US, so do that now. Be sure they have all scans and medical information in advance. The standard of care is chemo first. This can be done near home as it is standardized in formula per patient. Assuming chemo and / or radiation shrink your tumor there are other options available. Even if the cancer is metastatic, there are still options, but fewer. I have put 100's of hours of research in and will do my best to guide you, but begin doing research and learning about the disease ASAP. Stay calm (I know how hard it is) and become your own advocate. Forget the statistics on life span. You are a statistic of 1. There are many people alive today that have beat or are comfortably living with Pancreatic cancer.

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Thank you for information. I looked for another cancer center in my city, Winnipeg, Manitoba. But it just referrers me back to CancerCare Manitoba, which is the place that I will be going to. Should I ask them that I would like a second opinion from one of their other physicians?

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Profile picture for tootsie100 @tootsie100

Thank you for information. I looked for another cancer center in my city, Winnipeg, Manitoba. But it just referrers me back to CancerCare Manitoba, which is the place that I will be going to. Should I ask them that I would like a second opinion from one of their other physicians?

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IMO you should go to another place and get an "independent" opinion. Do you have any scans and blood work at this point? It's about the numbers and scan images and as such not being there in person is not an impediment. A virtual visit should do. Be sure that you go to the best quality facility in your country. This is critical.
How was your cancer diagnosed? Did you have an endoscopy with a biopsy to confirm the cancer diagnosis?

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Profile picture for keepingoptimistic @keepingoptimistic

IMO you should go to another place and get an "independent" opinion. Do you have any scans and blood work at this point? It's about the numbers and scan images and as such not being there in person is not an impediment. A virtual visit should do. Be sure that you go to the best quality facility in your country. This is critical.
How was your cancer diagnosed? Did you have an endoscopy with a biopsy to confirm the cancer diagnosis?

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I was diagnosed through an MRI infused. They sent me for an endoscopy with a biopsy. I have not received any results as yet. I will talk with my cancer navigator about getting copies of my results to be sent to an independent facility in Canada. I will let you know what my biopsy results are when I receive them this week. Thank you for all your advice.

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You want to meet with a "multi-disciplinary" team if possible. Oncologist, radiologist, and Surgeon. If your endoscopy biopsy shows it is cancer, they will give you the best guidance. Only use a high volume Pancreatic cancer center for the 2nd opinion.

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Profile picture for keepingoptimistic @keepingoptimistic

My wife's situation is similar to yours - 2cm Panceatic tumor wrapped around an artery ,and suspicious liver spots which are possibly (likely) cancerous. Not surgically operable at this time. Don't panic but do act. Get a 2nd opinion at a high volume cancer center, even if it is a virtual visit. There are many in the US, so do that now. Be sure they have all scans and medical information in advance. The standard of care is chemo first. This can be done near home as it is standardized in formula per patient. Assuming chemo and / or radiation shrink your tumor there are other options available. Even if the cancer is metastatic, there are still options, but fewer. I have put 100's of hours of research in and will do my best to guide you, but begin doing research and learning about the disease ASAP. Stay calm (I know how hard it is) and become your own advocate. Forget the statistics on life span. You are a statistic of 1. There are many people alive today that have beat or are comfortably living with Pancreatic cancer.

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Just an update. I got my results back from my endoscopy on my pancreas & they told me it was Adenocarcinoma. They have ordered me a CT scan of my lungs & bloodwork. CancerCare said after they get the results, they will make an appointment for me to see the oncologist who will order the chemotherapy. They also put me on pancreatic enzymes Creon to take with meals. I am hoping & praying that the chemotherapy will shrink the masses. Thank you for listening.

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Get to the Oncologist ASAP who most likely will put you on a Chemo regimen as soon as possible. The scans will most likely be used to determine if it operable, and / or is there vessel involvement? Is it contained to the Pancreas or has it metastasized? What is the stage? Time is valuable now and the sooner you get in Chemo the better. You may have to push to expedite the process, so do so if needed. My wife has just received prescription for Creon so I am curious if it helps you. She has yet to begin taking it. Chemo is the standard of care for adenocarcinoma. Based upon the answers to the aforementioned questions I can give you some of the information I have researched. You are going down the same path as my wife so sharing information is valuable for both of us. Do you have a support person who will advocate for you?

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Profile picture for keepingoptimistic @keepingoptimistic

Get to the Oncologist ASAP who most likely will put you on a Chemo regimen as soon as possible. The scans will most likely be used to determine if it operable, and / or is there vessel involvement? Is it contained to the Pancreas or has it metastasized? What is the stage? Time is valuable now and the sooner you get in Chemo the better. You may have to push to expedite the process, so do so if needed. My wife has just received prescription for Creon so I am curious if it helps you. She has yet to begin taking it. Chemo is the standard of care for adenocarcinoma. Based upon the answers to the aforementioned questions I can give you some of the information I have researched. You are going down the same path as my wife so sharing information is valuable for both of us. Do you have a support person who will advocate for you?

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At the present it is not operable due to it being wrapped around an artery and blood vessels. I have not asked them what stage I am at. I have been on Creon for a couple of days, so far so good. My support person is a Cancer Journey Navigator. I also have an app. with a dietitian.

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Profile picture for tootsie100 @tootsie100

Hi, I was recently diagnosed with adenocarcinoma of my pancreas. They also told me that 2 spots lit up in my liver. I am 65 female. I am really scared. I already had my appointment at CancerCare & they are going to start chemotherapy. They wanted to know if I wanted the prognosis for my condition, I said no. I am praying to God to help me with the pain in my total abdomen area & my back. I can't eat large meals due to feeling tight & bloated in the abdomen area. I have resorted to eating smaller meals like toast with peanut butter & eggs. I am asking for your prayers. I am hoping that the 2cm mass, which is entangled in the main blood vessels (non-operatable) & the 2 smaller masses, which are in the neck of the pancreas shrink. Thank you

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I am new to this disease having been diagnosed Aug 20. I suggest you ask for eating guidance from a nutritionist whom your Dr can connect you with. The Pancreas helps process fat when healthy. Peanut butter and egg yolks have fat. So eating them may increase your pain and other discomfort. Ask for eating do's and don't. I am 76 and voluntarily entered Hospice Care rather than go therapy and surgery route. Hospice is a wonderful group which helps people with serious disease. No cost to you.

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Profile picture for tootsie100 @tootsie100

At the present it is not operable due to it being wrapped around an artery and blood vessels. I have not asked them what stage I am at. I have been on Creon for a couple of days, so far so good. My support person is a Cancer Journey Navigator. I also have an app. with a dietitian.

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Do you have a family member or close friend for support?

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Seena Magowitz Foundation has a zoom call for the newly diagnoised. Go to the web site and go to "Support" and register it is FREE and has over 1000 patients from all over the nation. There will be about 25 people on the call.

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