1. < Pancreatic Cancer

What are we looking at?

Posted by lovemymom1 @lovemymom1, Sep 17 2:44pm

Hello, I am new here and needing some insight, hope in what we are up against.
My Mom who is 79 and otherwise healthy went to the ER for some abdominal pain. They did extensive test including MRI, CT with and w/o contract that revealed a mass on the pancrease and on the liver. The labs that were done the pancreas, ( which I am unsure what it is called) was very high, if I am correct normal is up to 135 and hers was in the mid 400's. She has had on and off cloudy/dark urine and has lost 20 pounds. All of this started about a month and a half ago.
She just had an upper endoscopy to get biopsies but the DR is pretty certain that it is cancer. She is scheduled to have a stent placed. So currently we are awaiting results but in the mean time my Mom has no appetite, she tries to eat light things but it's hard, she is getting weak and fatigued.
I have no idea where we are on this but is there hope for her? Looking up information it doesn't look good and I am so scared. Any advice or information is greatly appreciated. Thank you

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 17 4:20pm

Hello @lovemymom1 and welcome to Mayo Connect. I am sorry to hear that your mom is ill and that she might be facing a pancreatic cancer diagnosis. I know how stressful this must be for you and your mom. We have a discussion group that deals with newly diagnosed pancreatic cancer members. Here is a link to that discussion. This might be the best place to continue posting your questions and concerns.
-Newly Diagnosed, questions to ask
https://connect.mayoclinic.org/discussion/newly-diagnosed-questions-to-ask/
In this discussion group you will meet many with advanced pancreatic cancer such as @stageivsurvivor and @markymarkfl. You will probably notice that many of the members of this group will recommend a second opinion. (A second opinion might be available as a virtual appointment or an in-person appointment.) It would be valuable to have the second opinion at a pancreatic center of excellence such as a Mayo Clinic facility (link to Mayo appointments http://mayocl.in/1mtmR63). If an appointment at a Mayo facility is not possible, you can contact the Pancreatic Cancer Network, https://pancan.org/ for information about pancreatic specialists in your area.

I hope that you will post again in the discussion group listed above. Will you post and provide updates on your mom's diagnosis and treatment plan?

REPLY
marienewland | @mnewland99 | Sep 18 8:37am

Hello lovemymom77,
Glad you found this thread. You will receive excellent responses from those with a variety of experiences with pancreatic cancer. My dad was diagnosed with pancreatic cancer 25 years ago and it was scary. For myself, I started noticing symptoms at 64, got a proper diagnosis at 65 with stage 2, had surgery, then chemo and currently am on maintenance chemo with stage 4 since January 2024. I lost 50 pounds by the start of my first chemo sessions in 2023 but have gained almost all of it back. I live in Southern California. It sounds like your mom is receiving good care; but never hesitate to get a 2nd opinion. From the link sent by Teresa I hope it recommended you to go to a center of Pancreatic Excellence. Your knowledge, the caliber of her doctors, your mom’s age and health condition, her cancer stage, her mutations, and prayers will be the determining drivers in fighting this disease. It’s overwhelming at first, but your mindset must be that of a warrior with strength to fight as hard as you can. I think your mom did the CA19-9 or tumor marker? The upper limit of normal is 35 or 37. Are there biopsy results yet? Drs should be running a pathology on samples to know her mutations which will drive the treatments she will receive. Where was the stent placed? intestines, pancreatic duct, etc? What is the stage of cancer (very basically it should be between 1-4)? You will be getting a lot of responses much more technical and knowledgeable than mine (and I have a slight medical background from my college days!) they will be delivered information that is clear to understand. Stay strong and the course and I’m praying for you and your mom!

REPLY
3 replies
marienewland | @mnewland99 | Sep 18 8:38am
In reply to @mnewland99 "Hello lovemymom77, Glad you found this thread. You will receive excellent responses from those with a..." + (show)
@mnewland99

Hello lovemymom77,
Glad you found this thread. You will receive excellent responses from those with a variety of experiences with pancreatic cancer. My dad was diagnosed with pancreatic cancer 25 years ago and it was scary. For myself, I started noticing symptoms at 64, got a proper diagnosis at 65 with stage 2, had surgery, then chemo and currently am on maintenance chemo with stage 4 since January 2024. I lost 50 pounds by the start of my first chemo sessions in 2023 but have gained almost all of it back. I live in Southern California. It sounds like your mom is receiving good care; but never hesitate to get a 2nd opinion. From the link sent by Teresa I hope it recommended you to go to a center of Pancreatic Excellence. Your knowledge, the caliber of her doctors, your mom’s age and health condition, her cancer stage, her mutations, and prayers will be the determining drivers in fighting this disease. It’s overwhelming at first, but your mindset must be that of a warrior with strength to fight as hard as you can. I think your mom did the CA19-9 or tumor marker? The upper limit of normal is 35 or 37. Are there biopsy results yet? Drs should be running a pathology on samples to know her mutations which will drive the treatments she will receive. Where was the stent placed? intestines, pancreatic duct, etc? What is the stage of cancer (very basically it should be between 1-4)? You will be getting a lot of responses much more technical and knowledgeable than mine (and I have a slight medical background from my college days!) they will be delivered information that is clear to understand. Stay strong and the course and I’m praying for you and your mom!

Jump to this post

My typing in iPhone is so bad! lovemymom1, sorry!

REPLY
marcia | @marciak9 | Sep 18 8:51am

I’m so sorry you have to go through this. It is an aggressive cancer so it’s good to hear they are running all the tests. I have found my appetite.
Return with the drug called drabinol and for energy doctor prescribed Ritalin. I wish someone would’ve told me in the beginning to get a referral for a palliative doctor. They really help with the symptoms.

REPLY
1 reply
lovemymom1 | @lovemymom1 | Sep 18 10:24am
In reply to @mnewland99 "Hello lovemymom77, Glad you found this thread. You will receive excellent responses from those with a..." + (show)
@mnewland99

Hello lovemymom77,
Glad you found this thread. You will receive excellent responses from those with a variety of experiences with pancreatic cancer. My dad was diagnosed with pancreatic cancer 25 years ago and it was scary. For myself, I started noticing symptoms at 64, got a proper diagnosis at 65 with stage 2, had surgery, then chemo and currently am on maintenance chemo with stage 4 since January 2024. I lost 50 pounds by the start of my first chemo sessions in 2023 but have gained almost all of it back. I live in Southern California. It sounds like your mom is receiving good care; but never hesitate to get a 2nd opinion. From the link sent by Teresa I hope it recommended you to go to a center of Pancreatic Excellence. Your knowledge, the caliber of her doctors, your mom’s age and health condition, her cancer stage, her mutations, and prayers will be the determining drivers in fighting this disease. It’s overwhelming at first, but your mindset must be that of a warrior with strength to fight as hard as you can. I think your mom did the CA19-9 or tumor marker? The upper limit of normal is 35 or 37. Are there biopsy results yet? Drs should be running a pathology on samples to know her mutations which will drive the treatments she will receive. Where was the stent placed? intestines, pancreatic duct, etc? What is the stage of cancer (very basically it should be between 1-4)? You will be getting a lot of responses much more technical and knowledgeable than mine (and I have a slight medical background from my college days!) they will be delivered information that is clear to understand. Stay strong and the course and I’m praying for you and your mom!

Jump to this post

Thank you for your reply. We are currently awaiting the pathology results and hoping that will be in the next couple of days. Then the doctors "meet" and discuss her case including stage and what treatment will look like. The stent is being placed next week between her liver and pancreas because of the blockage and they don't want it to get worse so hopefully this will help with her appetite as well. I am not sure if she is getting weak because not eating much or the cancer. It's a scary road to be on and the waiting is so hard yet my Mom is being so positive and really has put it all in God's hands. I just love my Mom so much and hate seeing her have to go through this. Thank you again

REPLY
1 reply
lovemymom1 | @lovemymom1 | Sep 18 10:26am
In reply to @marciak9 "I’m so sorry you have to go through this. It is an aggressive cancer so it’s..." + (show)
@marciak9

I’m so sorry you have to go through this. It is an aggressive cancer so it’s good to hear they are running all the tests. I have found my appetite.
Return with the drug called drabinol and for energy doctor prescribed Ritalin. I wish someone would’ve told me in the beginning to get a referral for a palliative doctor. They really help with the symptoms.

Jump to this post

I am sorry to hear you are going through this. May I ask what state you are at and what they have done for you? I am glad you have found something for your appetite. My understanding it if it has spread they don't do surgery but I may be incorrect or maybe it's different for everyone. Thank you for your reply and I wish you all the best

REPLY
1 reply
marienewland | @mnewland99 | Sep 18 10:44am
In reply to @lovemymom1 "Thank you for your reply. We are currently awaiting the pathology results and hoping that will..." + (show)
@lovemymom1

Thank you for your reply. We are currently awaiting the pathology results and hoping that will be in the next couple of days. Then the doctors "meet" and discuss her case including stage and what treatment will look like. The stent is being placed next week between her liver and pancreas because of the blockage and they don't want it to get worse so hopefully this will help with her appetite as well. I am not sure if she is getting weak because not eating much or the cancer. It's a scary road to be on and the waiting is so hard yet my Mom is being so positive and really has put it all in God's hands. I just love my Mom so much and hate seeing her have to go through this. Thank you again

Jump to this post

Weakness is from both. Your body is still trying to fight this cancer on its own (but it needs help through chemo, immunotherapy, radiation, etc.)

REPLY
1 reply
lovemymom1 | @lovemymom1 | Sep 18 11:11am
In reply to @mnewland99 "Weakness is from both. Your body is still trying to fight this cancer on its own..." + (show)
@mnewland99

Weakness is from both. Your body is still trying to fight this cancer on its own (but it needs help through chemo, immunotherapy, radiation, etc.)

Jump to this post

Thank you that makes sense. Although we are just assuming but if it has metastizied to her liver and possibly lymph nodes (not sure but ER said they were swollen) isn't that state 3 or 4? What is the prognosis of that stage? Information I read doesn't look good.

REPLY
1 reply
marcia | @marciak9 | Sep 18 12:05pm
In reply to @lovemymom1 "I am sorry to hear you are going through this. May I ask what state you..." + (show)
@lovemymom1

I am sorry to hear you are going through this. May I ask what state you are at and what they have done for you? I am glad you have found something for your appetite. My understanding it if it has spread they don't do surgery but I may be incorrect or maybe it's different for everyone. Thank you for your reply and I wish you all the best

Jump to this post

My tumor was wrapped around major blood vessels. Surgery would have been too difficult. So I chose to have no surgery and just continue with chemo.
I’m in Minnesota so I went to the Rochester Mayo. It’s an hour and a half drive so I’m doing chemo here locally in the Minneapolis area.

REPLY
1 reply
lovemymom1 | @lovemymom1 | Sep 18 12:16pm
In reply to @marciak9 "My tumor was wrapped around major blood vessels. Surgery would have been too difficult. So I..." + (show)
@marciak9

My tumor was wrapped around major blood vessels. Surgery would have been too difficult. So I chose to have no surgery and just continue with chemo.
I’m in Minnesota so I went to the Rochester Mayo. It’s an hour and a half drive so I’m doing chemo here locally in the Minneapolis area.

Jump to this post

Oh wow I'm so sorry. I hope chemo works for you.
I meant stage not state😏 sorry. My Mom so far seems to be getting great care.

REPLY
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