Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide

@crmom

Welcome to Mayo Connect. First of all, take a deep breath in and slowly exhale. I have a pancreatic neurocrine tumor that has spread to my liver primarily. I was diagnosed 3 years ago. Let's kind of break things down a little, so I can understand more. I want to share what I have learned on my journey and also encourage others to share as well ok? Do you know the sizes of the tumors anywhere originally compared to their sizes on Wednesday? What do you think caused the weight loss? What can you do to take your mind off it for a brief period of time? Overthinking it all of the time causes a tremendous amount of stress. I know. I have been there.

Oh my goodness! I'm so sorry you have to go through this. It sounds like you have obtained alot of great information and the fact that you've been referred to Mayo Rochester is fantastic! They have one of the top net specialists in the country. He used to be in Phoenix where we are but I'm so glad that team is there for you. You will definitely be in excellent hands.
Once you see the net team, they may very well change the treatment plan. With a 20% ki67, you're on the higher side, which, in some ways is a plus as more traditional chemotherapy may work for you.
I know how scared you are. But you are doing the right thing by learning as much as you can about this disease.
If you'd like more learning resources, check out http://www.netcancerawareness.org
http://Www.carcinoid.org
W
http://www.netrf.org
But, being with Mayo, you'll be in great shape. Just educate yourself through these sites so you'll be prepared to have a fully informed discussion with your net team.
I wish you all the best in this journey. There are many here who share this journey, including me, who are here to help you through. My husband was diagnosed with pnet with 50% tumor burden in his liver 17 years ago and he's still here living his best life. God's blessings are with you!

Thank you for your reply. Up until Wednesday’s Pet Scan I had approximately 6 liver lesions with the largest being around 5 cm. The rest were about 3 cm or smaller. He didn’t give me exact measurements but said most larger ones grew approximately 30% or 1 cm in 3 months plus several new smaller lesions. Pancreas tail/body lesion had been just under 4 cm but I’m assuming it’s about 5 cm now. Pet scan just mentioned them being larger. My oncologist thinks I’ve had this for well over a year. I have a long history of heart burn, indigestion and always being told I had gastritis or GERD. I’d started losing weight in November because I cut out sweets, my coffee with creamer and a lot of high fat foods. That seemed to help do away with my heartburn and indigestion. But the weight loss has been continuing at about 2-3 pounds a months lately. I definitely needed to lose weight initially but wish it would stabilize. I was doing well emotionally before finding out about the progression. It just seems like I’m back to 24/7 worry. I know I need to pick myself up and battle on with next treatment which is Everolimus. My 15 month old grandson is coming to my house tomorrow for awhile and I know he’ll cheer me up.

The most important thing to do today is to enjoy your grandson. Focus on enjoying your moments with him. Hopefully, you can give yourself a mental break that will help you recharge your battery. Just one thing. Did you actually get to read the scan reports yourself?

Your journey is very similar to mine. I live in Maine, so was only able to go to Mayo for a second opinion. I was relieved when they affirmed the treatment plan my oncologist has me on. I have found that I have to follow up on everything from prescription refills to insurance to appointments. I never assume that anything gets done correctly. Keeping my own binder with important dates, results, and research has been helpful in keeping me organized. My mantra has been, "Make one decision at a time." Decide what is important to you. For me, I want good days, so I always ask myself, does this treatment trade June days for March days (metaphorically speaking). This helps me to feel like I have some control. Sometimes I say no to offered treatments, or at least not yet. My tumors are functional, producing gastrin which causes heartburn and terrible diarrhea, so I am grateful for lanreotide injections that keep the symptoms at bay. This allows me to enjoy my fifteen month-old grandson and his big sister. When I am overwhelmed or tired of thinking about cancer I have a list of topics that I can choose to think about, instead, like trips, garden projects, even a massive home remodel that will never happen just to give my brain something to chew on. These little bits of control, or at least perceived control have been great tools for maintaining quality of life, physical, mental, and spiritual.
Know you are not alone.

Your story is similar to mine. I was diagnosed with pancreatic cancer stage 2 & liver mets last May 2024. I felt then that my world stopped. I saw Mayo Rochester specialist in July & began meds. Followup just a few weeks ago & now scheduled for surgery in August. During the last year, I've walked, taken embroidery classes, quilted incessantly & lunches with friends. Anyone that asked me to do something I did. Also, my local hospital offered Tai Chi classes, which I found helpful. There is
hope, hang in there!

Yes I have read the Pet scan myself. No exact measurements. Existing hepatic lesions have shown an increase in degree of radiotracer activity and have increased in size. Several small new hepatic lesions. The pancreatic lesion has shown an increase in extent and degree of Dotatate uptake. Used the word larger concerning most of the previous liver lesions. I wish they showed measurements.

I noticed on pet scan the SUV, Standardized Uptake Value maximum has increased on previous lesions. I’m assuming it’s still well differentiated since my oncologist mentioned next step is probably PRRT and starting Everolimus later this week to hopefully stabilize tumors until I can get to Mayo in Rochester. I’m retired Air Force and running into issues with my Tricare insurance.