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Life expectancy with NETs and lifetyle as it progresses
Neuroendocrine Tumors (NETs) | Last Active: Jun 1, 2023 | Replies (18)Comment receiving replies
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
Replies to "I don’t know what to say. Mine is an Insulinoma, Pancreas and spread to my Liver...."
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.
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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.