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Pancreatic Cancer Group: Introduce yourself and connect with others
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?
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@tjberryi My husband doesn't speak much either 💔 I try to engage in any way I can just to try to help him open up. Anything to understand how he's feeling. At times I feel guilty if this makes any sense? That I'm not having to deal with all that he's endured these last 18 months. I told him as much also. That I at times can't imagine how hard this is for him.
I feel for you also . Anyone you can talk to? Sometimes people need time to deal with the reality of all this. It's so hard for all involved. 🙏
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5 Reactions@gvk911 Good luck with everything tomorrow. Let me know how it goes?
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3 Reactions@tomrennie
Thanks Tom. I was lucky enough to get an appointment with an oncologist tomorrow. His receptionist called me and asked if I could fill a cancellation. I might be crazy but I am not stupid, well, not that stupid, so I took the appointment. Yes, I knew that pancreatic cancer was one of the worst and I did not think that I would be getting it, but here I am. Hopefully I can make it through. I am sure that I can! Right now I feel good, but now that I know that I have pancreatic cancer I can feel a burning sensation in my stomach sometimes when I am eating. I think that it is just my mind thinking about my pancreas but this is a question for my doctor.
So you are coming up on four years. Hoping that you are feeling fine. Next week I will get back to you and inquire more about you. Thanks again.
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4 Reactions@donomary Hi and welcome to Mayo Connect. You have received some great feedback from others. How are you feeling? What thoughts and questions are you having? We are here to help.
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2 Reactions@donomary I am also not a Mayo patient but this Mayo community is indispensable for me. I am 65 years old. And I have hair. I went 12 rounds with Folfirinox, my hair didn't all fall out but it started to thin considerably by round 9. My friends and family said it wasn't noticeable but I did cut my hair short in September 2025. My PC was deemed resectable and I had surgery, but doc advised not to take out the port because of the recurrence rate. Kind of not what I wanted to hear after going through all that. I did lose a lot of weight but I am five months out now and I am back to my normal weight. I eat like a field hand. I wish you all the best, prayers if you are spiritual, luck if you are not. Maybe a little of both, actually. Will wait to hear how you're doing.
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3 Reactions@tjberryi I am glad that you are meeting with your physician. Once you get the referral, do you know where you are going to go next? I always have a few questions prepared for any doctor visit. If it is a first visit with a doctor, I always start off with a question like, "I couldn't do your job, so I really appreciate people like you that can. Why do you do it?" I really couldn't do their job, so it is an honest question. I have been pleasantly surprised by most of the answers that I have received. It also seems to set the tone of the relationship. We are just two humans doing our best to help me, and I appreciate the help.
I can relate to not telling most of my family. Some get too emotional or shut down to make a conversation helpful. My dad, who is now 90, has really helped. At that age, he has seen a lot and lost a lot of people. He reminds me getting old ain't easy for anyone. It hurts. It is unavoidable. I just got a bit of a head start on most people. He really helps me keep things in perspective. I am fortunate to have a big family. I can lean on my wife, and a few other close family members, when it is too hard to stand on my own.
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1 Reaction@tomrennie it’s still a battle I’ve got an appointment Thursday and I’m going to speak to my physician and ask for a referral. I appreciate everyone on this platform. It’s encouraging, I don’t speak of things around my family they don’t want to know ( I think it scares them) so I keep it all inside.. I’m really hoping to get some answers sooner than later. Thank you
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5 Reactions@gvk911 You have had a bit of a journey to get here huh? Hearing the diagnosis can be quite a gut punch. Have you been able to catch your breath a little yet? The conversation with the oncologist determines your next steps correct? Do you have an appointment for that conversation or is it just sitting by the phone waiting for the call?
After about three years of getting progressively sicker and unintentionally losing a lot of weight, I was diagnosed with stage 4 pancreatic cancer in 8/22. It spread primarily to my liver and some bones. Due to the spread, surgery wasn't an option. I have been living on chemo since. I get treated at Mayo in Phoenix. I got a folder of information during my diagnosis oncology visit with a mention of Mayo Connect. I lurked around for a few months and learned so much from others. It confirmed that I was fighting for my life, and we are better than me. So, I decided to contribute my journey to hopefully help others by being part of their we. I also learn something new every day here, and it is nice to have a group of peers that can relate to what I am going through. In addition to helping with the medical side of things, it also helps with the mental and emotional side of being a cancer patient. At times, I find them to be equally if not more challenging as the physical obstacles. Until you get the diagnosis, you really don't know what it is like.
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8 Reactions@donomary
Dear Mary -- You should consider going to a designated comprehensive cancer center. This link below lists several comprehensive cancer centers in Southern California:
https://www.cancer.gov/research/infrastructure/cancer-centers/find
The pancreatic cancer network has lots of useful information and contacts:
https://pancan.org
If surgery is an option consider going to a high volume center. The pancreatic cancer network can help with that.
Dan
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1 Reaction@tomrennie
Hi Tom,
I had an MRI (I believe) and there were lumps on my prostate and liver. An MRI was scheduled six months later to check on the liver. In the meantime, I had a prostate biopsy that confirmed that I had prostate cancer. I was to have Brachytherapy for the prostate. However, after the second MRI, there was a growth on the pancreas. A CT scan and an endoscopic Ultrasound were performed. The CT scan showed that there was no cancer in the bones. However, the endoscopy showed that there was cancer in the pancreas. As a result, the Brachytherapy was canceled. Shortly afterwards, I had an ultrasound endoscopic liver biopsy and this showed that there was cancer in the liver. I am just waiting to hear from the oncology specialist.
I believe that is what has happened.
Other than being tired, I was not really exhibiting any symptoms. My feet did feel different, sort of like there was a layer of fat on the soles of my feet. I have since looked at the symptoms of pancreatic cancer and there are many symptoms but these two stood out for me and they did not seem all that dangerous.
A few years ago, I was diagnosed with hemochromatosis. My body would not get rid of the iron in my blood. I had some phlebotomies and did get it under control. I was tired at the time and I think that the tiredness went away but still lingered on.
Warm Regards,
Glenn
PS Tell me your story about being with this support group, svp!
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4 Reactions