Poorly differentiated, high grade neuroendocrine carcinoma - surgery vs RT+chemo?

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Poorly differentiated, high grade neuroendocrine carcinoma - surgery vs RT+chemo?

by gfridman on Tue Sep 18, 2018 08:19 AM

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Please help! Hello. My father was diagnosed in April with Poorly differentiated, high grade neuroendocrine carcinoma (Ki- 80%) with primary in the head of the pancreas. After 4 rounds of Carboplatin/Etoposide tumor has significantly reduced in size and no new tumors have been identified on scans. Surgeon at John Hopkins believes Whipple is the most definitive treatment and is willing to do remote it. Oncologist recommending concurrent treatment of Chemo + Radiation Therapy as the way forward. The main reason is that there is a high chance of recurrence and that there is not enough evidence that surgery has better outcomes over chemo+RT. Anyone has experience with either approach and can share their outcomes? Whipple is a major surgery so worried to go for with it if the odds are the same. On the other hand it will remove the primary can it prolong life? What’s the quality of life after Whipple? So many questions. Very hard to find answers.

RE: Poorly differentiated, high grade neuroendocrine carcinoma - surgery vs RT+chemo?

by denver88 on Thu Sep 20, 2018 02:29 PM

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very well stated question and you have a good understanding of the type of pancreatic cancer and risks to surgery.  I went through the Whipple surgery in Feb 2017.  Yes, it is major, as significant operation as most any one can have.  I had a tumor at the head of pancreas (removed and to date no recurrence) and several very small tumors had developed in the liver (currently treated with lanreotide and stablized) and scans show no further spread into other organs at this time.  Recovery and surgery trauma can be very trying.  I was 70 years old and in good health at time of Whipple.  My recovery was amazingly without much pain immediately after the operation and very little after discharge 10 days later.  I did lose 27 pounds, some of it i should have lost anyway, and regained about 13-14 pounds within 4 months and was back to exercising at gym (very lightly and resonably) after 3-4 months and now at gym 6-7 days a week at full previous performance.  Diet for me was most challenging as was a "foodie" of sorts and lover of sausages, greasy steaks, cheeses and other fat filled foods.  I still eat these on ocassion with side affects mostly involving diarreha and very minor stomach discomfort.  After Whipple i converted to a different and easy to follow diet (for me) with oatmeal, plain bread, lots of peanut butter and yogurt, chicken, pineapple, and even a few beers (not unfiltered) seem to go down well.  I do try to avoid heavy fiber foods and that was easy.  So, one can get a pleasurable diet after the Whipple after a recovery period.  Now do note stories of folks with long recovery, painful recovery, continued dietary problems, and yes there can be complications that extend and/or make recovery seemingly never satisfactory.  I don't know of good statistics on complications and recovery and specifics for Whipple folks, mostly this involves stating there is a risk and initial recovery can be non-severe or very difficult.  This is a very serious operation with this part cut, that part removed, reconfiguring your internals, no outcome certainties, and the risk of infection.  In my case I felt no alternative.  If you choose the Whipple be sure the doctor performing the operation has plenty of experience and that he/she will be the one performing the operation and not some intern.  I don't know anything about chemo therapy.  I get monthly lanreotide injections that have contained the tumors, no big deal, and the shots have addressed many of the possible side affects such that can involve nausea, diarreha, cramping, etc.  I also take enzyme tablets with every meal and they help the disgestion of food.  A difficult decision for you both and there is no one right decision and even doctors can disagree.  Take care

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