How do you mentally handle reoccurrence?

Sorry to hear what you are going through we all deal with things differently I think is great you are reaching out! There are a lot of people here that have been through a lot. My first thought is find someone you can talk to that is qualified that can guide you. I have Pancreatic primary grade 2 ki-67 7% stage 4 liver and and spine functioning gastrinomas that destroyed my esophagus. That was May 2021 I had many dark days like everyone else. What helped my thoughts were I am here today and someone always has it worse. I don’t think it’s about being brave it’s about we don’t have a choice. I worry about my wife and family the most. I worry my granddaughters won’t remember me 1 and 2 years old I am 69 years old. Do whatever it takes to find something positive. I can somewhat relate to what you are going through however we are all different. Those little babies need all the love you can give them! Keep posting

@frogsong: I can’t help but think every cancer patient can relate to your grief over news of repeat growth of your tumors.
In our gut we know as NET patients that spread of disease can be transmitted anywhere in our bodies at a microscopic level… some grow… some don’t.
We have all had our “strong days” where we concentrate on beating this monster, but all it takes is reality hitting us in the face and we are sobbing & in the fetal position. I don’t want you to die! I don’t want to die either!
If I were you today I would use some of my energy researching cancer meds and all NET clinical trials available and take this info to my most respected NET specialist - and take your tissue box with you! Agree to any tests they suggest and ask for their BEST scenario! If you don’t like their take… repeat your questions to the next best NET specialist. You may have to get a 3rd opinion until you either ACCEPT a solution to your situation, or decide to die. You are in charge of YOU!
I am weak as any kitten at times, but perhaps you are like me & will feel strength and maybe even optimism by educating yourself with EVERYTHING science has to offer your cancer. I care about how you are feeling! My 2 cents…

In my darkest moments I decided that I would simply do my best that day. "I have been given today, I'm going to do my best with it". This along with others praying for me, got me through a very hard NETs cancer/surgery time. You are stronger that you know.

Thank you, I will try to live for the day. It is good advice

I'm so sorry you're going through this. I completely understand the fear you feel.
I'll start out by emphasizing what your own disease experience has shown you. This is typically very slow growing, giving patients alot of time to tackle things as they pop up. Yours didn't rear it's ugly head for 3 years! That's fantastic!
My husband was diagnosed stage 4 pnet 17 1/2 years ago and he's still here living life! After one net specialist told him to "get his affairs in order" another told him "nonsense" We can treat this as chronic disease. And that is exactly how it has played out for 17 years.
One thing to keep in mind that when reading boards, forums, Facebook groups etc you'll often only see stories from those currently struggling. The long term survivors often don't frequent these pages as they don't need them. So keep that in mind while reading in those places.
Secondly, I find taking control over the disease is important. You are not at the mercy of this disease. Take control by learning all you can about this disease and the available treatments. Be your own strongest advocate. If you haven't already, find and consult with a net specialist. This is crucial! Mayo has specialists at all 3 of their locations.
You can find more, listed by state at http://www.netrf.org
Lastly, I would urge you to seek counseling to help cope with your extreme emotions. Personally, my husband's outlook turned around completely when he turned his life over to God. That is where he found and continues to find the most peace and strength to carry on.
You may have to live a long life dealing with this disease. Don't waste that time in fear. Focus on gratitude every day. Be grateful for every day and every person in your life and every blessing in your life and enjoy every day God has graced you with.

I thought about my reoccurrence constantly for 2 weeks, waking up, difficulty sleeping. Then I just sort of accepted it and moved on. I found fun things to do—a painting class, for example. Trying to enjoy every moment and stop thinking about long term. In the end we all die. No one knows when or how.

Also, even though it was difficult we made a trip to visit family and young grandchildren.

Try to make lasting memories for family and friends. I also told friends and they were amazingly supportive.
Hope some of these ideas help you.

The fact that you wrote this post says you are incredibly STRONG! You defined what you think you ought to do. It’s ok to think the negative thoughts you’re thinking… just push hard to not allow them to be your front seat driver. Put them in the rear seat as you control the vehicle. Our prayers are lifted for you. All that we ask of you is… find that strength that you had the first go round… and show this cancer that it’s messing with the wrong person. You are powerful!

I’ve been in many difficult situations in my 70 years of life, but 3 years ago when I was diagnosed with NET’s it was the worst time.. What gets me through the fear is my faith and hope new advances in the treatment will keep me going. I am still active, and plan on being active for the near future. I continually think of how blessed my life has been, great wife who would do anything for me, 4 children and 13 grandchildren.. No regrets.. Then I think of the children that have to battle life threatening illnesses, that haven’t had the chance to experience in life what I have, and it makes me accept my future.. Which I believe no one can predict.. Of course this is just how I cope..not everyone is the same.. I do hope you can find your peace once again….

I too have been so blessed in my life. I love my family so much… I think it is because of “love” that this hurts so much…

@lindabees thank you Linda, your wisdom and posts on this board are always educated and helpful.