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Pancreatic Cancer - neuroendocrine small cell carcinoma

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Joined: Sep 2013

Pancreatic Cancer - neuroendocrine small cell carcinoma tumor of the pancreas


A long story from diagnosis / Whipple Procedure surgery / complications / chemo / radiation therapy to today.


DIAGNOSIS: I was working with my son doing a construction project just after Christmas, Dec 28, 2011 and he noticed that my eyes were yellow. That day I went to my family doctor who recommended a CAT scan. Two days later I went for the scan and had it read by a surgeon in NJ. He said that it was a tumor in my pancreas blocking the bile duct and recommended the Whipple Procedure. My wife / advocate of 31 years wanted a second opinion and searched for a surgeon. After some research and recommendations we found a surgeon (DR. DEMATEO) working out of Memorial Sloan Kettering Cancer Center (MSKCC). As a side note for about 3 weeks prior to the CAT scan my stool was yellowish and there was a clear oily liquid floating on top of the water in the toilet bowl and I was quite tired but didn't think twice about it because overall I felt good. Note – I was born in 1954.


SURGERY: Jan 10, 2012 I had the Whipple procedure in (MSKCC) Memorial Sloan Kettering Cancer Center in New York. It went well and the tumor was removed as well as the head of the pancreas, gall bladder, a portion of the small intestine and 21 lymph nodes (of which 16 were cancerous). The surgery went well. I only had one drain at the point at the site of the surgery which was removed prior to me leaving the hospital on Jan 21, 2012. Although I felt anxious to leave the hospital after 8 days of rest, my white blood cell count was still high which indicates an infection. After another few days of observation and no signs of infection (discomfort, pain, or fever) I was given permission to leave. With-in the stay of my 12 days there, I went from 220 lbs to 196 lbs.


COMPLICATIONS:  One week after getting home - On Saturday Jan 28, 2012. I started to get stomach pain in the early evening. The pain got severe quickly and my wife called 911. 911 arrived as well as my sister in law.  I was brought to a local hospital (Englewood Hospital in NJ). They took a scan and said that there were three pockets of infection and scheduled me for emergency surgery that night because my vital signs were all reading dangerously low; things were touch and go. My wife didn’t want to do emergency surgery that evening as she wanted to check with our surgeon at MSKCC first. The next day, Sunday afternoon, my vital signs were stable enough to be transported to MSKCC so I didn’t have emergency surgery at the local hospital. I was out of it for all of this and only remembered being taken to the local hospital. I was told that our surgeon at MSKCC came in that Sunday night to see me and ordered some procedures to be preformed.

    Over the next few days four drains were placed into the 3 infectious pockets that drained into bags that the nurses would measure and empty. There were also two stints placed from two of the infection pockets into my stomach for draining. There were two types of infections that drained out some funky liquids for the next three to four week. I was in intensive care for two weeks before being released to a regular room. It was another two weeks before being released. I was told that I had been on a respirator for a while; however, I don’t remember much of the intensive care stay. During this 4 week period, I didn’t have any desire to eat and went from 196 lbs to 159 lbs which a good part of that weight was muscle weight (muscle atrophy).

  During this stay it was difficult to walk even with help and the walker. I used a portable commode and couldn’t get up alone. I was washed in bed. This was a helpless feeling. The surgeon and his team visited me daily. He also had the radiologist, infectious disease, psychiatrist, physical therapist and nutritionist involved.

  I see myself not mentioning the nurses. I have a great deal of respect for the nurses and staff. They are the 24/7 king pins that holds everything together. Their responsibilities are immense and they have a vast wealth of knowledge. My hat is off to the nurses and I want to thank them for all of the care they gave me and especially my family while visiting.

    On my follow up visit to the surgeon, he said that there are a very low percentage of complications. One reason for a complication is that when the pancreas is healthy like mine was, it’s like Jello and doesn’t hold a stitch well and can leak which can cause infections. Surgeons have less trouble when there is something wrong with the pancreas and it is more rigid.

    I do believe that I have one of the top surgeons in the country for this operation. My wife and her sister visited me daily which I appreciated. My wife tucked me in about 10 pm every night before leaving for home to NJ. and then going into work the next day.


CHEMO: March 31, 2012 - I was fortunate enough to get a greatly sought after top oncologist familiar with this rare form of aggressive cancer (Dr. Diane Reidy) to accept me as a patient. I was setup to receive chemotherapy consisting of six session’s, three days of treatments per sessions, spaced 3 weeks apart followed up by a shot the Saturday after each session. That’s 18 weeks. The three days after the shot I received on Saturdays I was tired and my body got sore to movement and touch. I finished my last treatment July 7, 2012. I made it through the first round of chemo fine. (Etoposide and Cisplatin)


CAT SCANS:  August 14, 2012 I had a follow up CAT scan that was clean. This was a great feeling for me and my family.

December 10, 2012 I had a follow up scan to find two tumors. One about 2” in diameter that was wrapped half way around a major blood vessel in the same area of the tumor that was removed and a second in the same area 1” in diameter.


CHEMO: Dec 19, 2012 The tumors are inoperable so I started my second round of chemo. (Etoposide and Carboplatin)


CAT SCANS:  On Feb 20, 2013 the results of the latest CAT scan taken came back and the two tumors got a little smaller. However two additional tumors showed up in the liver and some lymph nodes in the stomach showed signs of cancer. The doctor changed the type of CHEMO that day and I’m currently on a different type of CHEMO. (Irinotecan and Carboplatin)


CAT SCANS: On May 1, 2013 we got the results of the CAT scan. The two tumors in the liver shrunk slightly. The tumors in the stomach area got larger and are pushing on some nerves causing some minor back pain. The oncologist is reaching out to the surgeon and radiologist to see what can be done. Still on chemo and feeling a bit nauseous during chemo so they will be giving me something to help with that. I’m tired but feeling good.  The surgeon said that he couldn’t operate because the tumors are tied up in blood vessels.


RADIOLOGIST:  May 13, 2013 we met with Dr. Wu who wants to schedule me for radiation for the growing tumor in the stomach.


RADIATION:  June 3, 2013 - June 21, 2013 just finished 3 weeks of daily radiation without chemo. Feel good, a bit tired.


CHEMO:  July 1,2013July 10, 2013 . Then July 15, 2013 Blood test results showed Platelets at 42, which is too low so the chemo has been pushed off. Chemo resumed 7/31 and is every other week. (Irinotecan and Carboplatin)


CAT SCAN:  August 30, 2013 we received the CAT SCAN results. The two tumors in the stomach area shrunk to about a third of the size because of the radiation and chemo. The 2 tumors in the liver got larger and are more vesicular. The oncologist will see if the surgeon can take a biopsy of these two tumors because of the change in them. There are a few lymph nodes with cancer and one is by my lung.


                  CHEMO:  Started back up September 11, 2013 every 2 weeks.

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