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?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

billedwards234 | @billedwards234 | Aug 3 7:50pm

In reply to @tsacco "She has adenocarcinoma. Scheduled for a whipple on 7/29." + (show)

How did things go on the 29th?

mcharlesfrancis | @mcharlesfrancis | Aug 4 9:22am

0-37 is normal so 135 is not out of the ballpark. Standard protocol is chemo first surgery and then chemo if she is eligible. Make sure you are going to a Pancreas cancer specialist not a regular Oncologist.

carlajones101 | @carlajones101 | Aug 4 6:55pm

In reply to @mcharlesfrancis "0-37 is normal so 135 is not out of the ballpark. Standard protocol is chemo first..." + (show)

Is it adeno or neuroendocrine?

mcharlesfrancis | @mcharlesfrancis | Aug 4 8:56pm

In reply to @carlajones101 "Is it adeno or neuroendocrine?" + (show)

Adeno

carlajones101 | @carlajones101 | Aug 5 5:35am

In reply to @mcharlesfrancis "Adeno" + (show)

A search under clinicaltrials.gov had a study that had a restriction of no other pancreatic cancer treatment which I didn't qualify for but wished I would of checked out when I was trying to make a decision on what to do. Unfortunately time is of the essence so I followed Dr advice and jumped into chemo. (So far so good with tumors shrinking).

tootsie100 | @tootsie100 | Sep 14 1:05pm

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

mcharlesfrancis | @mcharlesfrancis | Sep 15 7:57am

Seena Magowitz Foundation has a national call for pancreas cancer patients. Go to there web sight and register. You will get a call and e-mail to invite you to the next call. This call is nation wide and has a cancer researcher and patients from all over the nation who help each other.

gamaryanne | @gamaryanne | Sep 15 8:41am

@tootsie100
I second Michael Francis’ comment. Sometimes I just listen and it can be inspiring. But also, you will learn a great deal from others on this journey. Many, many have traversed the journey you are on who are still engaging and loving life!

keepingoptimistic | @keepingoptimistic | Sep 15 3:04pm

In reply to @tootsie100 "Hi, I was recently diagnosed with adenocarcinoma of my pancreas. They also told me that 2..." + (show)

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.

scooter369 | @scooter369 | Sep 15 3:54pm

135 is not too high. I just got my CA 19 nine down to 62 after being over 1500. I’ve seen people report murderous way north of 1500. God bless you.🙏🏼🌈☘️