Life expectancy with NETs and lifetyle as it progresses

I don’t know what to say. Mine is an Insulinoma, Pancreas and spread to my Liver. Mine was diagnosed/ discovered April of 2022 when I was getting a hernia repaired. My Doctors prognosis was not positive. Told by 2 doctors in 2 different hospitals that I would be gone by Thanksgiving of last year. Third hospital, Dana Farber in Boston started me on chemo every 2 weeks for 6 months immediately and Octreotide once a month. Tumors on the liver went for 10cm to 4cm and are still getting smaller. I’m still on the 28 day
Octreotide, doesn’t seem to bother me but the last half of the chemo was getting tough. I lost 90 pounds, just couldn’t eat. Came in handy being a fat guy!
We all have different types of NET in different stages and all respond differently to the treatments that also vary. I’m sure you asked you doctor and didn’t get an answer, me too. Although Dr, 2 in my case told me not to worry, Liver failure is painless and would you like to participate in my end of life study. That was my last appointment with that SOB.
Having read this site over the last few months I think you can live for years in some cases. I’m still above ground in spite the opinion of “experts” and feeling good.
So keep up the good fight. Good luck

The people on this website are the bravest I know. I applaud you for your perseverance in finding a doctor/hospital that was able to treat you. Dana Farber has the reputation for being #1 in excellence in cancer research. I am seen by an oncologist at a Dana Farber satellite location near my home but I think Mayo Clinic is the tops in patient care and that is why I use Mayo Clinic for this online support group and as a source of information. The message I would like to convey to everyone is that you know your body, you know when something is wrong, don't be intimidated by anyone because they have a medical degree. Eventually you will find someone that will listen to what you are saying and be able to help you. You need to be proactive in your care and try to remain focused on one day at a time. God Bless.

I wish I had an answer for you, but I doubt that even your doctor can give you a real timeline. My first tumors were in my small intestine and abdominal/pelvic area. I had a colon resection and other tumors removed 12 years ago, and had no further symptoms, and no further treatment. Mayo doc told me that my situation was metastatic and tumors would probably return, but had no timeline for me. Now tumors have returned in my liver and pelvic region. I thought my fatigue and regular-but-not-severe abdominal pain were tumor symptoms, but MD Anderson doc said probably not. He gave me three options--Lanreotide, PRRT, or nothing, all with scans several times a year. Using only sketchy information he had from Mayo, he said that my tumors likely would never change much and I should not worry about them. But they had grown over the previous years, and he could give me no good reason for thinking they will not continue to grow. I chose Lanreotide, and am not having much discomfort with it, although my liver enzymes and my seratonin stay high. I have drastically changed my eating plan to help with that. I don't know if mine are non-functioning. I think the Stage 4 refers to the metastasis to your bones and lungs. My only advice is that if you can get a second opinion, do it, even if you like your doctor. Sometimes even the best doctors bring their own personal perspectives to their treatment decisions. I wish you well, and hope the tumors stay right where they are and you have a very long and happy life.

You have been dealing with it longer than my wife has and seem to have a good plan going forward. We are not doctor's of course, but can share our stories and hopefully the information helps someone. Kim was diagnosed with NET in April 2022, with large mass on tail of pancreas, and too many tumors to count on liver. Our oncologist referred to Froedtert Hospital Cancer Care team who are NET Specialist's, possibly the best decision we made in all of this. They have a multi-disciplinary team which recommended Kim to to start immediately with Lanreotide injections, and start CAP/TEM Chemo (pills). She completed 9 cycles (months) and this past March 1st, finally had surgery after her tumors in both spots were reduced up to 80%. Surgery was not possible when first diagnosed, so we were very thankful, as the surgery to remove the tail of pancreas, spleen, gall bladder, and debulk as many of the tumors on liver was successful. Our hope is that it will only be a Mtn. item now as we continue the Lanreotide injections, and doing MRI's every 3 months, our first one after surgery is coming up and we are praying for good results. So, I didn't answer your question, but fight this every step of the way, with your cancer care team, and you may be able to kick it done the road a bit, as our Head Surgeon told us, to our with our greatest thanks to move forward with her life and enjoy it. Let us know how we can help, with more information or other. We all got this!

Thank you for this up date. I was diagnosed July 2022..have had chemo-Fo-flox every two weeks sine...thats 22 treatments! Surgery was not on the table in the beginning as I have lesions on the liver as well.Shrikage has been positive and stable. Part of me is still hoping we might be able to revisit the surgery but not sure. I am at
Dana Farber in Boston and have met others who are living with this for years. I have not started the shots yet as they want to continue with the chemo and see how the scans are. I do have an insulinoma which makes wathing my sugars another job in itself!! I wear a dexcom system just like a diabetic but its the opposite. I have better control of that now as I think its just going to stay around!
Thank you all for sharing!

I also have insulinomas. . . Diagnosed originally in 2015 with 2 tumors in the pancreas, 2017 found 9 more in the pancreas @ Mayo, 2023 the tumors metastasized to the liver - undetermined #. I have had a modified Whipple and a distal pancreatectomy/splenectomy. Currently, I am on Sandostatin (octreotide) 30 mg every 28 days and 50 mcg short acting as needed to control the blood sugars. No conversation on life expectancy but I feel good (other than when hypoglycemic) and really no other issues other at this point. I have a great endocrinologist at Mayo that keeps close tabs on my progress and a great oncologist here in NC. My motto - you have 3 choices - give up, give in or give it all you’ve got! I am giving it all I’ve got. Best wishes to all of you in your journey - as all NET journeys are unique!

Hi @ahtaylor -- I love your motto! I have always loved the "Never Give Up" poster and use it as my inspiration. A picture is worth a thousand words and the poster says it all.

I take octreotide as well for lung NETS/DIPNECH to control symptoms and slow growth. It has been great for symptoms, but actually caused high blood sugars for me. Well worth it though! Glad you're feeling well and ready to keep enjoying life! 🙂

Thanks! 🙂
Higher blood sugars are a benefit with insulinomas which cause random hypoglycemia. I was still having frequent hypoglycemia on 20 mg so just increased to 30mg with most recent injection.
Positivity is my strength and weapon!
Thanks for sharing!!

Liked your reply, especially the SOB part made me laugh so thanks for that humor. Yeah doctors don't know the life expectancy in many cases so they shouldn't be making comments about that because they can be so wrong. Take it one day at a time and stay involved in the decision process for treatment. One surgeon was anxious to do small bowel resection and I was not because imaging showed stability so I backed out last minute. Then the next year I agreed to surgery and two days before surgery HE backed out saying not worth the risk/benefit for me. How about that! Talk about confusion and anxieties. So I talked to a smart retired doctor and he said what happened was that surgeon was overridden by someone above who reviews all pre-ops for final approval. Then I got second opinion at Dana Farber in Boston and that surgeon said NOT to do it as well. So here I am 3 years later, no surgery yet and doing OK. Go figure. My lesson is stay involved in decisions. Good luck.

I've read previous comments & my experience has been mostly same as oncologist told me that I could live a long & 'normal' life with NET cancer. I find the elevated blood sugars to be annoying, so besides diet & exercise, I'm not sure if there's much I can do about that. Information is power, so that's the great thing about having forums like this. Wish you & everyone else the best on his/her journey.