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Pancreatic Cancer Support Group
Online

Pancreatic Cancer Support Group

Tue, Dec 27, 2022
12:00pm to 1:30pm MT

Description

A cancer diagnosis may be stressful and scary.  Talking to someone in a similar situation may be helpful.

Please join us the fourth Tuesday of each month.

Location

Zoom online meeting

Location

Online

Contact

Raeane Veralrud, MSW
Raeane Veralrud, MSW
Email: veralrud.raeane@mayo.edu
Phone: 480-342-0005
saraiandsamson | @saraiandsamson | Dec 24, 2022
In reply to @howleegirl "My husband was just diagnosed last week.....I think it would be very helpful to talk to..." + (show)
@howleegirl

My husband was just diagnosed last week.....I think it would be very helpful to talk to someone who is going through this!
Debbie

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I am just starting to understand the process on pancreatic cancer. My twin sister was diagnosed last week as well. Lots of info to absorb. Stay positive and warm this Christmas Season. Char. S.

REPLY
saraiandsamson | @saraiandsamson | Dec 24, 2022
In reply to @kevinakear "The BEST thing you can do is talk to a survivor or someone going through it...." + (show)
@kevinakear

The BEST thing you can do is talk to a survivor or someone going through it.
Even better is to find a “cancer buddy” someone near you also going through it. I had three and although two since passed, the one is is struggling but hanging in there.
It is survivable! Everyone knows some who died from it and now you know some who survived it. I only tell everyone my story and it is empowering. My diagnosis was September, 2020. Early detection and quick action at Topper Clinic, LVHN, in Allentown, Pa is the key to my survival. I don’t know where your at, but if you can go there, they don’t fight cancer; they go to war with it. And make sure you get a nurse navigator assigned to you from the treating facility, not one from your insurance company. They don’t really know you but the nurse/nav from your facility has a vested interest in your success.
It was something out of a horror movie. Seven weeks of complications of every sort.
This is not at like all those medical dramas on TV where the patient wakes up looking like they just had a Sunday afternoon nap. Thank god for the awareness, but don’t make it a fashion statement or minimize the the impact. Many people said to me “this is just a bump in the road”. It is not.
To me, it was more of a gift if you can believe that. The gift of clarity: I suddenly saw everyone as they really are. This turns your life upside down and tears it apart if you allow it.
Good luck, Godspeed, and welcome to the club. You are one of Us now. It not a club anyone wants to join, but once your are in, you’ll find nothing but support here.

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thanks for sharing your journey. Allentown, Pa. I'll be looking it up.

REPLY
carol1951 | @carol1951 | Dec 27, 2022
In reply to @howleegirl "My husband was just diagnosed last week.....I think it would be very helpful to talk to..." + (show)
@howleegirl

My husband was just diagnosed last week.....I think it would be very helpful to talk to someone who is going through this!
Debbie

Jump to this post

We got the same 6 mos ago

REPLY
1 reply
6xgramma | @6xgramma | Dec 27, 2022
In reply to @carol1951 "We got the same 6 mos ago" + (show)
@carol1951

We got the same 6 mos ago

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I will celebate 6 months on Friday. I was so thankful to make it to Christmas and feel well enough to celebrate it joyfully with my family!
Chris

REPLY
1 reply
carol1951 | @carol1951 | Dec 27, 2022
In reply to @6xgramma "I will celebate 6 months on Friday. I was so thankful to make it to Christmas..." + (show)
@6xgramma

I will celebate 6 months on Friday. I was so thankful to make it to Christmas and feel well enough to celebrate it joyfully with my family!
Chris

Jump to this post

We were as thankful as you. All the family came in. God is good and we are enjoying the time we have left together

REPLY
howleegirl | @howleegirl | Jan 7, 2023
In reply to @kevinakear "The BEST thing you can do is talk to a survivor or someone going through it...." + (show)
@kevinakear

The BEST thing you can do is talk to a survivor or someone going through it.
Even better is to find a “cancer buddy” someone near you also going through it. I had three and although two since passed, the one is is struggling but hanging in there.
It is survivable! Everyone knows some who died from it and now you know some who survived it. I only tell everyone my story and it is empowering. My diagnosis was September, 2020. Early detection and quick action at Topper Clinic, LVHN, in Allentown, Pa is the key to my survival. I don’t know where your at, but if you can go there, they don’t fight cancer; they go to war with it. And make sure you get a nurse navigator assigned to you from the treating facility, not one from your insurance company. They don’t really know you but the nurse/nav from your facility has a vested interest in your success.
It was something out of a horror movie. Seven weeks of complications of every sort.
This is not at like all those medical dramas on TV where the patient wakes up looking like they just had a Sunday afternoon nap. Thank god for the awareness, but don’t make it a fashion statement or minimize the the impact. Many people said to me “this is just a bump in the road”. It is not.
To me, it was more of a gift if you can believe that. The gift of clarity: I suddenly saw everyone as they really are. This turns your life upside down and tears it apart if you allow it.
Good luck, Godspeed, and welcome to the club. You are one of Us now. It not a club anyone wants to join, but once your are in, you’ll find nothing but support here.

Jump to this post

I thought all the cancer was removed during the surgery....wrong!! Apparently it is in 6 lymph nodes. I am crushed!!! My heart is broken. From what I've read that's pretty bad. We haven't talked to the doc yet. I read the pathology report on his portal. Doc hasn't even seen it yet. (according to his nurse) Why would they do that? Communication has not been very good from the start and I've had to make sure things are done. We are in TN and have excellent cancer centers.
I really need to find some support........

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 7, 2023
In reply to @howleegirl "I thought all the cancer was removed during the surgery....wrong!! Apparently it is in 6 lymph..." + (show)
@howleegirl

I thought all the cancer was removed during the surgery....wrong!! Apparently it is in 6 lymph nodes. I am crushed!!! My heart is broken. From what I've read that's pretty bad. We haven't talked to the doc yet. I read the pathology report on his portal. Doc hasn't even seen it yet. (according to his nurse) Why would they do that? Communication has not been very good from the start and I've had to make sure things are done. We are in TN and have excellent cancer centers.
I really need to find some support........

Jump to this post

Getting results ahead of your appointment can be a blessing and a curse. You ask "why would they do that?"

In 2016 the Cures Act went into effect, but the part that pertained to access to patient records wasn’t effective until April 2021. The Dept of Health and Human Services began enforcing the rule which declared that a hospital or doctor must allow access to a person’s health information.

You can read more from other members about tips to using the patient portal and navigating the sometimes scary world of see results before the doctor in this discussion:

- The Patient Portal—Help or Hindrance? https://connect.mayoclinic.org/discussion/the-patient-portal-help-or-hindrance/

Please join the discussions in the Pancreatic Cancer Support Group https://connect.mayoclinic.org/group/pancreatic-cancer/

REPLY
kevinakear | @kevinakear | Jan 7, 2023
In reply to @howleegirl "I thought all the cancer was removed during the surgery....wrong!! Apparently it is in 6 lymph..." + (show)
@howleegirl

I thought all the cancer was removed during the surgery....wrong!! Apparently it is in 6 lymph nodes. I am crushed!!! My heart is broken. From what I've read that's pretty bad. We haven't talked to the doc yet. I read the pathology report on his portal. Doc hasn't even seen it yet. (according to his nurse) Why would they do that? Communication has not been very good from the start and I've had to make sure things are done. We are in TN and have excellent cancer centers.
I really need to find some support........

Jump to this post

It would be my honor and I would be happy to support you. Just before the holidays, on this website was an article about teaming support survivors with current patients geographically near each other. I am in Allentown, PA, about 600 miles away, but support is support, near or far.
I cannot and will not give medical advice, just support, insight, and can very much relate to what your are facing.
Our moderator, Ms. Young, hopefully sees this and is able to forward our emails to each other. Our conversations will be private and may become tense at times and are not for everyone to see and chime in. As you might have already noticed, my views are quite contrarian and some readers may find them offensive. If the moderator has any requirements for me to complete, I will make every effort to do so. I have supported two friends this past year, and while neither survived, you will be helping me with my grief while I help you with this most difficult journey.
Good luck and Stay Strong,
Kevin Kear
REPLY
meb49 | @meb49 | Jan 8, 2023

I understand what you’re feeling. I was hoping to see the end of this disease with surgery in October. This after 8 chemo treatments and 15 radiation treatments. The PET scan showed spots on my hip bone and in my lungs. The bone biopsy showed metastatic cancer in my hip. Surgery was canceled and now I’m on chemotherapy and radiation treatment again. This time to control the disease.
Each time I spoke to my oncologists they expressed hope, never promises. I was somewhat prepared for bad news but not completely. Throughout this journey my family has been there for me, at times so much so that I cried for them. The one Rock that I have never stopped leaning on is my God who has promised to never leave the me. I know He is always there for I feel His presence in the love of my friends and family. I also receive His Word for me in study and prayer.
I don’t know what the future holds. I didn’t know even before my diagnosis. I live in trust that I am not alone and that if it is God’s will I will outlast this awful disease.
I’m praying for you that you have the support and strength you need to get through this. I keep an eye on this site and I am part of your background support group. God bless you.

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1 reply
bbv | @bbv | Jan 9, 2023

Howleegirl: my doctor felt good about removing all the visual mass with clean margins during a recent Whipple surgery on 12/30/22! Previous “brushings” & “sweepings” of the mass in several ERCPs for stent insertion/removals in the bile duct resulted in a non-malignancy diagnosis. During the Whipple surgery, samples were removed for biopsies at that time! 1 lymph node out of 22 sampled revealed pancreatic ductal adenocarcinoma!
Am in the state of TN as you indicated and wondering where you’re going for your treatments! If you don’t mind sharing, who are you seeing for followup care?

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