1. < Pancreatic Cancer
Moderator

Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

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

amy | @asugent | Nov 1, 2022
In reply to @vogonor "My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently..." + (show)
@vogonor

My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently had surgery during which part of my pancreas and two lymph nodes were removed. In January 2022, I started six months of chemotherapy, which I completed in June.

My doctor assured me that I was cancer free. Unfortunately, this is not true. Right now the tumor has grown to a size bigger than what it was before I had the surgery. Now the same doctor who ignored the upward trend of my tumor marker test results wants me to undergo another chemotherapy under his supervision. I am reluctant to continue my treatment with him, especially after he claimed the tumor marker numbers decreased during my treatment, which is not true. His total reliance on CT scan (which did not reveal the presence of the cancer prior to the surgery). On top of this, the doctor told me that my cancer cannot be cured and that I would die of the disease. The chemotherapy has resulted in my fingers and toes being numbed.

Am I wrong for not wanting to continue treatment with this doctor?

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You are not wrong at all. My mom was cancer free for 3 years (or so we thought) until a tumor showed up on her ovary. Apparently, her oncologist missed it on the scan, so she went from March until now with zero treatment for metastasis. I want to fire her oncologist and get someone else, but she wants to stick with him bc he knows her history. I don't agree with my mom's position on this, but it is her call. You do what you feel is best for you! Trust your gut above all else! Good luck!

REPLY
Victoria Dukes | @victoriadukes | Nov 1, 2022
In reply to @vogonor "My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently..." + (show)
@vogonor

My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently had surgery during which part of my pancreas and two lymph nodes were removed. In January 2022, I started six months of chemotherapy, which I completed in June.

My doctor assured me that I was cancer free. Unfortunately, this is not true. Right now the tumor has grown to a size bigger than what it was before I had the surgery. Now the same doctor who ignored the upward trend of my tumor marker test results wants me to undergo another chemotherapy under his supervision. I am reluctant to continue my treatment with him, especially after he claimed the tumor marker numbers decreased during my treatment, which is not true. His total reliance on CT scan (which did not reveal the presence of the cancer prior to the surgery). On top of this, the doctor told me that my cancer cannot be cured and that I would die of the disease. The chemotherapy has resulted in my fingers and toes being numbed.

Am I wrong for not wanting to continue treatment with this doctor?

Jump to this post

@vogonor
No, you are not wrong for not wanting to continue with this doctor. Of course, every scenario is different, and I am far from being a doctor.... It may not be a problem changing, but not sure about that in this stage of the game. Wish you were @Mayo Florida. If there is any way you could come either to Mayo Rochester MN, Mayo Arizona or Mayo Jacksonville, where I am. The best of the best. Dr. John Stauffer (Mayo Jacksonville) I'm scheduled for Whipple on 11.7 next Monday for IPMN pre-malignant cystic mass head of pancreas; having my last Endoscopy today before surgery next Monday.

I pray you receive peace about what path to take from here. Thank you for sharing this. I can feel your frustration and indecision. Please update.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 31, 2022
In reply to @vogonor "Yes, I am considering getting a second opinion." + (show)
@vogonor

Yes, I am considering getting a second opinion.

Jump to this post

Sounds like it would be helpful in this situation. You want to have confidence in the care you're getting. If you'd like to inquire about a second opinion at Mayo Clinic, here's more information: http://mayocl.in/1mtmR63

REPLY
vogonor | @vogonor | Oct 31, 2022
In reply to @colleenyoung "Welcome @vogonor. Have you considered getting a second opinion?" + (show)
@colleenyoung

Welcome @vogonor. Have you considered getting a second opinion?

Jump to this post

Yes, I am considering getting a second opinion.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 31, 2022
In reply to @vogonor "My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently..." + (show)
@vogonor

My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently had surgery during which part of my pancreas and two lymph nodes were removed. In January 2022, I started six months of chemotherapy, which I completed in June.

My doctor assured me that I was cancer free. Unfortunately, this is not true. Right now the tumor has grown to a size bigger than what it was before I had the surgery. Now the same doctor who ignored the upward trend of my tumor marker test results wants me to undergo another chemotherapy under his supervision. I am reluctant to continue my treatment with him, especially after he claimed the tumor marker numbers decreased during my treatment, which is not true. His total reliance on CT scan (which did not reveal the presence of the cancer prior to the surgery). On top of this, the doctor told me that my cancer cannot be cured and that I would die of the disease. The chemotherapy has resulted in my fingers and toes being numbed.

Am I wrong for not wanting to continue treatment with this doctor?

Jump to this post

Welcome @vogonor. Have you considered getting a second opinion?

REPLY
1 reply
philv | @philv | Oct 31, 2022
In reply to @mamarina "Philv On weight loss not much. Ive talked with a few nutritionists but they really werent..." + (show)
@mamarina

Philv
On weight loss not much. Ive talked with a few nutritionists but they really werent much help except drink boost and ensure. I have 2 stents billiary and dueodenal so my food intake is somewhat limited
I take enzyme creon , i hired a nutritionist who evaluated my bloodwork and gave me various supplements
I add whey powder, canned coconut milk endures to smoothies. But I can only ingest small amts at a time so I only maybe drink 8 oz , 4 oz at a time. Im struggling to maintain my pitiful weight

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Thanks,
Told me the same drink ensure.

REPLY
vogonor | @vogonor | Oct 31, 2022

My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently had surgery during which part of my pancreas and two lymph nodes were removed. In January 2022, I started six months of chemotherapy, which I completed in June.

My doctor assured me that I was cancer free. Unfortunately, this is not true. Right now the tumor has grown to a size bigger than what it was before I had the surgery. Now the same doctor who ignored the upward trend of my tumor marker test results wants me to undergo another chemotherapy under his supervision. I am reluctant to continue my treatment with him, especially after he claimed the tumor marker numbers decreased during my treatment, which is not true. His total reliance on CT scan (which did not reveal the presence of the cancer prior to the surgery). On top of this, the doctor told me that my cancer cannot be cured and that I would die of the disease. The chemotherapy has resulted in my fingers and toes being numbed.

Am I wrong for not wanting to continue treatment with this doctor?

REPLY
3 replies
philv | @philv | Oct 30, 2022
In reply to @mamarina "Philv On weight loss not much. Ive talked with a few nutritionists but they really werent..." + (show)
@mamarina

Philv
On weight loss not much. Ive talked with a few nutritionists but they really werent much help except drink boost and ensure. I have 2 stents billiary and dueodenal so my food intake is somewhat limited
I take enzyme creon , i hired a nutritionist who evaluated my bloodwork and gave me various supplements
I add whey powder, canned coconut milk endures to smoothies. But I can only ingest small amts at a time so I only maybe drink 8 oz , 4 oz at a time. Im struggling to maintain my pitiful weight

Jump to this post

Thanks for the tips. I need to start back on ensure

REPLY
mamarina | @mamarina | Oct 30, 2022
In reply to @mamarina "Coleen my surgeon ( miami cancer institute ) was very discouraging actually as to a good..." + (show)
@mamarina

Coleen my surgeon ( miami cancer institute ) was very discouraging actually as to a good out come for me. And said they would do it if I was 100% on board with all that could go wrong and a painful recovery. He wouldnt be able to do it laparoscopically and said realistically it might gain me another year and half.. and id have to have surgery nov 3 before too much scar tissue from rads developed ..
as did the other opinion from johns hopkins ..
who said if I got radiation he wouldnt do surgery
Well I did the proton mri guided radiation the last week of Sept.
thank you all for input

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Not sure if i mentioned the end of Aug after believing I was borderline resectable which got me thru chemo ( which kicked my butt) my surgeons told me they couldn't do the surgery. That was devastating so got my wits about me got that johns hopkins second opinion , which wasnt favorable but he would try… only if i didnt do rads , then decided on the radiation

REPLY
philv | @philv | Oct 30, 2022
In reply to @thebobk "@lanceh I, too, had issues with taste and feeling if fullness. Part of the problem is..." + (show)
@thebobk

@lanceh I, too, had issues with taste and feeling if fullness. Part of the problem is that I have a persistent "bellyache" and foods I can tolerate one day may taste bad a few days later. If I try to force food/drink then I feel worse, occasionally needing pain killers to mitigate chest/back pain. It's kind of like tossing darts at a moving target while blindfolded 😣

Jump to this post

Sorry you're having those problems. Luckily I'm not in any bad pain. I know you never feel like eating if you're in pain.
Stay strong !

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