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.

burksgrl | @burksgrl | Apr 26 12:55pm
In reply to @stageivsurvivor "For pancreatic cancer, this is beyond their area of expertise. A consult should be with a..." + (show)
@stageivsurvivor

For pancreatic cancer, this is beyond their area of expertise. A consult should be with a pancreatic cancer oncologist which is a GI oncologist whose sub-specialty is cancers of the pancreas. Following are links for finding a pancreas cancer oncologist that practices in the high volume centers with a pancreas program. If the patient is relatively healthy enough to qualify for a clinical trial, it is the pancreatic cancer specialist who is in the best position to know of trials.

CENTERS OF EXCELLENCE

https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/ .
https://pancan.org/research/precision-promise/locations/

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@gmaryanne,
Thank you for your reply. We are at a major medical center, midwest. When I clicked to find providers of excellence from your post, I was surprised to find they werent on it! but another local hospital is! Soninlaw is now 4 1/2 years out from diagnosis and chemo radiation . Now having GI bleeding issues due to radiation damage, apparently.

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1 reply
mayoconnectuser1 | @mayoconnectuser1 | Apr 27 11:05am
In reply to @burksgrl "@gmaryanne, Thank you for your reply. We are at a major medical center, midwest. When I..." + (show)
@burksgrl

@gmaryanne,
Thank you for your reply. We are at a major medical center, midwest. When I clicked to find providers of excellence from your post, I was surprised to find they werent on it! but another local hospital is! Soninlaw is now 4 1/2 years out from diagnosis and chemo radiation . Now having GI bleeding issues due to radiation damage, apparently.

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There are a lot of major medical centers, but not many pancan centers of excellence.

It is extremely important to go where the best are!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 28 11:35am
In reply to @drhmch "My wife is 70 years of age and was diagnosed with stage 3 pancreatic cancer in..." + (show)
@drhmch

My wife is 70 years of age and was diagnosed with stage 3 pancreatic cancer in Oct 2023. Since she has undergone 4 months of FOLFIRINOX. Following this treatment she was moved to GEMCITABINE. However, treatment was stopped after two sessions due to a severe allergic reaction. She stared 3 weeks chemo/radiation this week. The tumor is at the head of the pancreas and has encased several blood vessels. Surgery is beyond Whipple, requiring the complete removal of pancreas, along with spleen, gallbladder, etc. most recent scans have shown a shrinking tumor, reduced avidity and normal blood markers. Question: Given the complexity and recovery challenges of surgery, is it common for patients in this situation to opt out of surgery? If so, what are the alternatives to consider?

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@drhmch, I'm sorry to hear that chemo has been a challenge with unanticipated complications. For some patients, surgery is not possible and some patients choose not to have surgery due to the reasons you've stated.

I think you might appreciate joining this related discussion in the pancreatic cancer support group:

- Decided not to have surgery. What’s next?
https://connect.mayoclinic.org/discussion/whats-next-5/

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marcia | @marciak9 | Apr 28 4:57pm
In reply to @optimist1591 "Folks, I am a two time cancer person, breast and thyroid. I was diagnosed last month..." + (show)
@optimist1591

Folks, I am a two time cancer person, breast and thyroid. I was diagnosed last month with 1.3 cm lesions in the pancreas. Luckily it is not considered cancer, yet. I'm told protocol is a follow-up MRI in 6 months. I'm trying to find out from my doc if the protocol should be anything different given my history. Hard to get answers from busy people. Advice anyone? Thanks.

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I find a fairly quick response through the messages in the app. Usually 24-48 hours.

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sheridanb | @sheridanb | Apr 30 9:38am
In reply to @burksgrl "@gmaryanne, Interested to know, do you visit all the various provides in other parts of the..." + (show)
@burksgrl

@gmaryanne,
Interested to know, do you visit all the various provides in other parts of the countryor is it virtual. Trying to get a virtual second opinion for soninlaw, 4.5 year survivor. It goes better with a dr. referral, I know. Trouble is I don’t know which Dr to contact. Major midwest medical center, but the main Doc seems to be oncologist. He still has pancreatic tumor but no further growth or new lesions found. that team now says Hospice or Palliative care. which he doesn’t want at this point. Should he have another primary care doc who can maybe look in with fresh eyes? Any opnions would be welcome. Thank you.

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When they were first diagnosing my husband's cancer, we contacted Cleveland Clinic for a virtual second opinion. Very disappointed with that as they simply repeated what the oncologist said here... and they both misdiagnosed the primary so it set us back months of wrong treatments. I was told afterwards that we (non medical people) could have requested additional tests, etc. But we went for the virtual second opinion believing that the oncologist there would order any relevant tests, and he didn't. His words gave us false hope that we were on the right tract. If we did it again we would ask many more questions.

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1 reply
burksgrl | @burksgrl | May 1 7:48pm
In reply to @sheridanb "When they were first diagnosing my husband's cancer, we contacted Cleveland Clinic for a virtual second..." + (show)
@sheridanb

When they were first diagnosing my husband's cancer, we contacted Cleveland Clinic for a virtual second opinion. Very disappointed with that as they simply repeated what the oncologist said here... and they both misdiagnosed the primary so it set us back months of wrong treatments. I was told afterwards that we (non medical people) could have requested additional tests, etc. But we went for the virtual second opinion believing that the oncologist there would order any relevant tests, and he didn't. His words gave us false hope that we were on the right tract. If we did it again we would ask many more questions.

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Oh very interesting! We just submitted a request to Mayo fora second opinion. Wonder if that will be the same?
I sure hope not…..

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1 reply
sheridanb | @sheridanb | May 1 9:32pm
In reply to @burksgrl "Oh very interesting! We just submitted a request to Mayo fora second opinion. Wonder if that..." + (show)
@burksgrl

Oh very interesting! We just submitted a request to Mayo fora second opinion. Wonder if that will be the same?
I sure hope not…..

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In my husband's case all the reports kept coming back saying "consistent with lung cancer" so apparently no one checked to see if it could have been something else. A CA19-9 blood test would have shown easily that it was pancreatic cancer. Or a biopsy on the spot in the pancreas. But until we switched oncologists, those were not done and we had no reason/knowledge to request them. I don't have any experience with Mayo but would hope they are more on top of these things. Good luck to you!

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mayoconnectuser1 | @mayoconnectuser1 | May 2 4:27am

One of the basics - and cheap - is CA 19-9 blood test.

Any competent medical facility, or even a family doctor should be knowledgeable enough to insist on this.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 3 4:32pm
In reply to @breemichelle26 "Hi Marcia- has the GAC helped shrink your masses in your abdominal peritoneun?" + (show)
@breemichelle26

Hi Marcia- has the GAC helped shrink your masses in your abdominal peritoneun?

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Hi @breemichelle26, I believe your question is for @marciak9. I'm tagging her to make sure she sees it.

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marcia | @marciak9 | May 3 4:38pm
In reply to @breemichelle26 "Hi Marcia- has the GAC helped shrink your masses in your abdominal peritoneun?" + (show)
@breemichelle26

Hi Marcia- has the GAC helped shrink your masses in your abdominal peritoneun?

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Hello!
They haven’t done a scan yet. I go to Mayo on the 16th and they might have news. I’m scheduled for a PET on the 17th here. I just had my 6th treatment.

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