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How do you mentally handle reoccurrence?
Hi, I am struggling. I just had my 6 month surveillance mri for my pancreatic net. (It has been 3 years since my distal pancrectomy . I now have a new tumor close to the surgical margin. I will have the pet dotatate as soon as it can be scheduled.
My original tumor had already invaded lymph nodes and had both neural and vascular invasion… I knew it was only a matter of time. And yet I still find myself thrown by this new news… I guess I was hoping to kick the proverbial can a bit farther down the road. But here I am, gotta pick up the can.
I have so much fear! I am just going to say it out loud, I am afraid to die.
How do I find hope? How do I not just curl up and wait to die? I am a mess I cannot think of anything else.I wake up feeling so much grief . I look at my little granddaughter and I lose it thinking how terrible it will be for her when I am gone. I cannot eat and I can barely breathe. My flight or fight response is engaged constantly. I cry continuously. I am pathetic.
The first experience I had with pancreatic net left me mentally debilitated for a long time. I was on antidepressants and they eventually helped. I know I need to get back on them again. But it will take 6 weeks to feel they are working. And the onboarding process is difficult with plenty of side effects.
My question is again, HOW do I get through this? How do I not free fall into very dark places? How do I still live? Help!!!! I am truly on the ledge here.I am not mentally tough like so many brave people on this site.
Thank you. I know none of this is positive… maybe it will even be flagged….
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@frogsong I wish you the best of luck with your surgery Monday! Keep us posted with your recovery.
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3 ReactionsHello @frogsong
How are you doing? Have you had any other NETs treatment? Are you able to eat OK and to maintain your weight?
So sorry to hear about your tumors. Can they surgically take them out to buy more time?
When you talk about your grandaughter it brings tears to my eyes. I have stage 4 metastic disease that started in my lung which they removed. 2 years later it went to my liver and bone. So I am dealing with the grief and the awareness that I will not see my granddaughter get married. I am probably older than you so I am not afraid just sad. I spend much of my time with my children and friends are supportive. Maybe doing a list will help you find the things you want to do. I plan on traveling and celebrating the time I have left. May you find peace as you go through all the stages of grief.
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4 ReactionsPancreatic cancer is one of the most complicated cancers there is. Even excellent doctors sometimes see different things. Getting another opinion isn’t second-guessing your team — it’s making sure you’ve explored every available path.”
With recurrence:
The biology may have changed.
Genetic testing may reveal new targets.
Clinical trials may now fit.
Treatment tolerance history matters.
Goals of care may shift.
Major centers that specialize in pancreatic cancer often review pathology and scans differently. Sometimes they see nuance others miss.
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3 Reactions@frogsong
I am sorry to just now respond and I do hope you have since seen a doctor that has a treatment plan for you that has begun.
I have been on this journey of reoccurrence since 2021. Second opinions have made a huge difference and given me hope. But greater than any doctor’s kind words, are the hope I have in the Lord, our great physician. HE has guided me to be very intentional in all I do, looking for people and places I can make a difference, using the wisdom and faith He has given me. I fill my days with work that I love, people I love, and nature. I know that none of us will be “getting out of here alive”. Will this disease take me? Probably. But I continue to focus on being as healthy as I can to withstand whatever comes next. Be hopeful! There are many new things in the works for pancreatic cancer patients!!!!💜💜find doctors that want you on their list as a SUCCESS story!
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8 ReactionsIt is positive. Keep making noise. I totally understand the mental anguish, anxiety and frustration. Scanxiety is a real diagnosis. Go to the hospital director...🙏
Get 2nd, 3rd, 4th etc opinions.
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