This is a recap of my experience with the Whipple procedure to remove a Cancerous Neuroendocrine tumor. From discovery to surgery to recovery.
My hope in writing this is that someone, somewhere is going through something similar and wants to learn/hear about the whole experience.
If you take nothing else away from this post, please just go to the damn doctor.
I am 32 years old and a very active person. I’ve been a gym/exercise rat since I was around 18. Before that I was on track and played basketball. More recently, since covid, I got really into kettlebell workouts. I do the Simple and Sinister kettlebell workout at least 5x a week as well as walk my dog Maple with my wife Laura in the mornings and evenings and sometimes even at lunch(if doggo’s lucky.) I continued to work out every day until the day before my Whipple Procedure, thinking it would help speed up my recovery. I also love playing and listening to music, I’ve been a drummer since middle school and still play in a few bands. I’m also an avid gamer and since covid, regularly play CS:GO(Counter Strike-Global Offensive) with my friends. I also love RPG’s and any game that’s space related. I also love to read and watch anything to do with the Medieval time period and space.
When this all began, I went to a Gastroenterologist complaining of an itchy bum. I also mentioned that I was having between 5-6 bowl movements a day for the past several months. Hearing that, my doctor told me he’d like me to get a Colonoscopy to make sure nothing serious is going on. Between that day and the day of the scheduled Colonoscopy, I began having(sorry for the grossness) orange oily stool. I looked it up and it said it’s either from eating some weird fish (which I’ve never eaten) or it’s some form of pancreatic issue. It was very uncomfortable and would sometimes just come out even when I wasn’t on the toilet. On the day of my Colonoscopy, I mentioned this to the doctor, he said we would talk about it after the Colonoscopy was complete. After the Colonoscopy, the doctor informed me that everything looked ok. But he then said the oily stool concerned him and he wanted me to get a CT scan to make sure nothing further was wrong.
After less than 24 hours from my CT scan, I got a call from his office asking me to come in to speak with the doctor. In my mind he was going to tell me I had a tapeworm or parasite that could be fixed with medication. I went to the appointment alone thinking it wasn’t going to be a big deal. Once I entered his office I knew from his expression, even with a mask on, that something was very wrong. He sat me down and informed me that I had a ‘very large’ growth on my pancreas. He said although he didn’t know exactly what it was at the moment, he knew it would definitely have to come out. He made sure to tell me a few times that this was ‘very very serious.’ My thought was, because I wasn’t really reacting, he thought I wasn’t taking it seriously. But to be honest, I was just in shock. He then referred me to a doctor who would perform an Endoscopy with Ultrasound and Biopsy, so we can really see what this thing is and how serious it is. He also referred me to a surgeon that I should schedule a consultation with.
While all of this was being told to me, and the receptionist was printing out the things I needed to get an MRI and details about the other doctors, I was beginning to lose it. It felt like it took 20 minutes for her to print out the stuff and I just really wanted to get out of there. She saw me starting to cry and handed me the papers and told me she was so sorry and let me out a back door so I wouldn’t have to be seen by other patients waiting. I then started to cry for a long, long time in my car. I was hitting the steering wheel out of frustration, yelling and cursing and had such weird feelings. A mix of terrified, angry and in disbelief. I have no idea how much time passed but I finally got myself together so I could drive(around 20 minutes) home. I broke down several more times on the drive home. At times I considered pulling over because I really couldn’t see well. I was so scared of telling my wife and parents and everyone I knew about this crazy, terrible thing that was brought to my attention. I also had NO information about what it was or how serious it was which was the most terrifying part.
I will just say very briefly that telling my wife, parents and close friends was one of the most difficult things I’ve ever had to do. They all were as strong as they could be but the news was just too much for them at first, as it was for me.
I went to my Endoscopy appointment a few days after learning that I had this growth. It was similar to the Colonoscopy in terms of prep and how long it took(in my mind) although I didn’t have to drink that Gatorade stuff, so that was a plus. They performed the Endoscopy with an Ultrasound and Biopsy, so they could get a good understanding of where the growth exactly was, what it was made of, and if it had spread to my stomach. The doctor described the Biopsy as poking a very tiny needle through my stomach into the growth. Once I woke up he informed me that he had to poke it 7 or 8 times in order to get a good sample of it. Since the growth was very vascular he wanted to make sure he got some cells from the growth, not just blood. There was a bit of pain from that. It kind of felt like a bit of a cramp in my stomach that only lasted a few days.
The results from the biopsy came back so my doctor called me to let me know the growth was a Cancerous Neuroendocrine Tumor. He explained that it is the less aggressive form of cancer and would certainly need to be removed. He said it may have been growing slowly on my pancreas for over 5 years!! In my mind, this was great news and I literally asked him if I could drink a beer to celebrate. He replied, ‘I would try and keep as much of your pancreas as healthy as possible until you get this thing out.’ My wife was shocked that I was in such a good mood about the news, since a much better prognosis would have been it was a benign tumor. Although that was a very good point, I was still happy to know what it was and that it wasn’t straight up Pancreatic Cancer, which is more aggressive.
I then went to a flurry of appointments and visits in the following week to get another CT scan specific for Neuroendocrine Tumors, an MRI, as well as a PET scan specifically for Neuroendocrine Tumors. The PET scan proved to be the most important of all. It found that a little, pebble sized piece of the tumor had made its way to my liver. So once I did get surgery, we could truly try and get every bit of it out.
Surgeon Visits and Luck:
Once it was known what the tumor was and where it was, it was clear to my doctors that I was going to need to have the Whipple Procedure done. All the doctors I spoke with were pretty shocked at how young I was to have this kind of cancer/procedure since it’s typically found in people at least 50+ years old.
“The Whipple procedure is a complex operation to remove the head of the pancreas, the first part of the small intestine (duodenum), the gallbladder and the bile duct. The Whipple procedure is used to treat tumors and other disorders of the pancreas, intestine and bile duct.”
AKA an extremely scary and invasive surgery where they remove a bunch of organs, 1/3 of the pancreas and rearrange your guts. (see photo)
By some freak chance my brothers girlfriend at the time worked in the recovery unit of Whipple patients for years. She immediately called me and told me how sorry she was and how she had been working under a Surgeon that specialized in this exact surgery. My family and I looked him up and were very impressed by his reviews and treatments he performed on a weekly basis. I also had another surgeon that my Gastro suggested, so I decided to get 2 opinions.
After meeting with the surgeon my brother’s girlfriend suggested, I was sold. He broke down exactly what he would do and how intense it would be. He spelled out that they were going to have to do an invasive surgery and cut my abdomen basically in half to get to the growth. He mentioned to me that he had done this surgery 500+ times in his career and that it would all be ok. He said the procedure would be around 6.5 hours and also mentioned that the recovery would be 7+ days in the hospital, followed by 1 month of feeling bad and not being able to eat very much, followed by another month of starting to feel like myself.
Although I felt fine in the meeting, the gravity of the surgery and recovery all hit me again after we left. I lost it and hugged my dad waiting for the elevator back down to our cars. I knew it would be ok, but I had never had something this serious done before and I was horrified of how serious this surgery seemed to be.
Day of surgery:
Laura was allowed to wait with me while I was hooked up to an IV. We waited for a while while several nurses and anesthesiologist talked to me about exactly what was going to happen. They said I was going to have an epidural shot in my spine to paralyze my organs to make them easier to work on. Once they wheeled me into the operating room, they had me sit on the edge of the bed while hunching my back so they could administer the shot. That was the last thing I remember before I woke up.
Night of surgery:
I woke up very disoriented and not sure if they did the operation yet because I passed out so abruptly. I was able to see Laura for a few minutes but I really don’t remember anything of what we said except(in my head)me just saying, ‘I love you’ over and over again. A nurse came in and out many times throughout the night to check on me and take my pulse and temp. I thanked her every time she woke me up and she was extremely grateful. She said most people curse at her or are pissed that she keeps waking them up. That is insane to me. She’s making sure I’m alive.
Post OP day 1:
I was woken up a lot on the first night as I said, but I’ll just say ‘when I woke up’ as a frame of reference. When I woke up it was I think around 6 or so, I was still not in a lot of pain since the anesthesia lasted for 12 hours. I looked around and noticed several IV’s in my arms. Two in my right and two in my left. The two in my right were on the top of my hand and under my wrist. The wrist one was a direct line to my blood pressure in a major artery. They took both out relatively early in the morning when they thought I was stable. Freeing up that hand was glorious. My left hand had an IV on the top of my hand that was installed right before surgery and another one further down the side of my wrist.
I also noticed the catheter and the fact that I had 2 tubes coming out of me. One tube was coming out of my stomach and connected to a bag, the other out of the right side of my belly and connected to a much smaller water balloon looking thing. The stomach tube was pinched closed for 6 hours and then opened over and over again my whole stay at the hospital, this was to make sure my stomach was processing my ‘food.’ The less came out of me the better. The right tube filled up with whatever was draining out of the surgery site (like blood and puss). They emptied this one every day I think.
I wasn’t allowed to drink water or eat anything for the first 2 days. They gave me a tiny sponge on a stick that I could dunk in ice water to wet my mouth but that was it. It felt like torture.
My wife and family came to see me and I was barely able to sit up to greet them. I had a very hard time talking and paying attention to them since I was on so many pain killers and other things.
Later in the day, they had me sit up and I almost threw up, but I sat there for a bit and the feeling passed. Then they had me try and stand up. Same thing. I waited a bit then the nurse carried all my bags and wires and we went to the door. I told her I was going to puke so we went back. I then stood up in place for about a minute and felt good enough to try and walk. We did an extremely slow lap or 2 around the nurses station and I was brought back to my bed.
Post OP night 1:
This is when the pain really started to kick in. The anesthesia that paralyzed my muscles was wearing off and according to the nurses, I press the self-administered pain medication button 87 times throughout the night. I believe it was Morphine, and it was monitored so I wouldn’t overdose. I basically just laid there, listening to my roommate blasting game shows, writhing in pain. I couldn’t really do anything, like move or sit up or change positions because my stitches hurt so much, as well as my insides. Looking back, I should have called a nurse to give me more, stronger pain meds, but I didn’t for whatever reason. I am an idiot.
Post OP day-night 2:
I woke up in similar pain as I had been in the night before. However this time I told the nurse and she approved me for getting a stronger cocktail of drugs to help take the edge off. That REALLY helped. I was still in some pain and discomfort, but it was much more bearable than the previous night had been. My wife came to visit me since it was a Sunday, and stayed from about noon until 8 pm. Once she left I listened to a book on tape and just tried to get some sleep, which was pretty much impossible since the hospital nurses had to wake me up every few hours to give me meds and my roommate was blasting game shows (again).
Post OP day-night 3:
Day 3 was a good day. I still was in a lot of pain but I was finally allowed to drink some water. It was literally one of the best feelings/sensations I have ever experienced. I was also given some Jell-O and other liquidy food to eat. All tasted amazing. They also took out my catheter on the third day. Although it was a pretty painful and weird experience, I felt slightly more independent having one less tube/IV coming out of me. I now only had the stomach tube, drainage tube, and 2 IV’s coming out of me.
The doctors and nurses came to check on my stomach tube/bag to see if my stomach was processing my food and it seemed like it was. There were some subtle talks of me getting to go home early but I wasn’t trying to get my hopes up. They got me up as they had the 2 days prior to do some laps around the hospital. I think I did 3 or 4 and the nurse who walked me around was pretty shocked. I could barely stand the day before so I guess I was a bit ahead of schedule.
They also gave me some solid food today!(see pic on right of PASTA.) They gave me pasta with meat sauce, rice, apple sauce, plain white bread and pudding. This seems like a joke but it may have been the best meal of my life in that moment. I couldn’t eat all of it, but just chewing and eating real food was amazing.
My mom and dad came to visit me for a while, followed by 7 of my best friends who came to my room in 2’s since I could only have 2 visitors at a time. They gave me an amazing gift – a Nintendo Switch that all my friends had pitched in for for my recovery. I couldn’t handle how kind and amazing that was, but crying really freaking hurt so I just held my pain pillow(incase you cough or sneeze you hold it up to your stitches so it hurts less) and cried and told them how grateful I was, though getting the words out was very difficult. It still makes me cry just thinking about it. I am forever grateful to my friends and family, without them I don’t think I would have made it through this.
Sleeping was still pretty rough and I don’t think I got more than 30 minutes at a time throughout the night. Hospitals just aren’t made for sleeping.
Post OP day 4:
Today I was told I’m going home. I had no nausea from the solid food and I was processing my own food according to the stomach tube/bag the doctors were checking. They also gave me solid food for breakfast – a hardboiled egg, apple sauce, green tea, milk and rice krispies. Another meal fit for a recovering king.
After I ate breakfast a nurse came in and told me she was going to remove the smaller tube that was collecting residual things from the surgery site under my stomach. She told me it would feel a little weird and I would feel some pressure. She then started pulling it out, hand over hand, for what felt like 30 seconds. I had no idea this tube was so long and watching her pull it out was truly crazy. Once it was out it was a big relief and she covered it immediately. She also removed the larger IV from my left wrist. So all I had now was the stomach tube/bag and one more IV on top of my left hand.
After that, some of the fellows came in to interview me about how I was feeling and to see if I was ready to go home. I said as long as they think my progress is good enough, I am DEFINITELY ready to go home. They then removed my stomach bag and plugged the tube coming out of my stomach. They said the tube had to remain in my stomach for the next 2 weeks just incase I had severe nausea or vomiting. If so, I could still open it, kind of like a relief valve.
Later on in the afternoon, I asked if I could have a toothbrush and some soap so I could wash my face. The nurse then gave me a toiletry bag and I have to say, brushing my teeth and washing my face made me feel like a brand new person. It took me a while, as bending over hurt and I had to hold my stomach bag with one hand while I did anything. So I was washing my face with one hand. When I was all done and stepped out of the bathroom, my Surgeon was waiting for me in the hallway. He told me I’m good to go home and I should call my wife. He was very pleased with my progress and said the surgery went very well. He also mentioned that he couldn’t locate the cancer in my liver with an ultrasound, but could feel it with his fingers. He said I was very lucky that the PET scan found it because otherwise it would have gone undetected for a long time.
I was wheeled out to the parking lot to be picked up by Laura. I cried the whole way down. Not because I was in pain and felt every little bump(which I did) but because I couldn’t believe how quickly I was leaving and I was still thinking about how amazing all my friends and relatives had been with their kind words, texts, calls and just all around positivity. I was also on pain killers, so I think I was a little more emotional because of that as well. But for DAYS after I was an emotional mess. Everything made me cry, even writing this out 6 weeks later is making me cry. I think I just had an amazing epiphany about my life and the people in it and am so so grateful to have them all in my life. I can’t handle people being nice to me anymore, it just makes me cry now (but it’s a good cry).
Back Home – Night 1:
Ahh the quiet. Having a quiet house with not a sound was truly amazing. I was still in a lot of pain, and getting around was nearly impossible. I had to rely on Laura to get me up from the couch, to make me dinner, to help me into bed, nearly every aspect of the day I needed her help. Sleeping was still terrible. Although I was processing food, I was unable to release gas. I couldn’t fart or burp and that was probably the most painful/uncomfortable part of the entire surgery (besides the first night.) The gas was constantly pushing on my stitches and causing my insides to hurt as I filled up more and more. The only way for me to pass any gas was to walk around for a while and hope something happened. I was on pain meds so that helped a little, but I couldn’t sleep in any position besides on my back and propped up. So eventually, I just slept on the couch with a bunch of pillows under my back, practically upright.
Back Home – Day/Night 2-10:
I woke up in pain, took my pain meds and felt a bit better. Laura and I went on a ‘walk’ if you can even call it that. Laura was practically holding me up as I walked down the stoop very slowly then down our driveway. I walked another 100 or so feet and had to turn back. I did this a few times a day, for the next week or so until I could slowly add more steps by pushing myself to hit the next landmark. Since I still had the plugged stomach tube in me, walking and moving was very uncomfortable and awkward. But I kept pacing in the house throughout the day/night to try and move gas as well as work myself up to try and walk a little further in the outside world.
I was on a very strict very low fiber diet, which was a lot of white bread, pasta, cereal, and that’s about it. I also had to avoid seeds of any kind just incase they got caught in my healing intestines and caused an infection.
Back Home – Day/Night 10-20:
I was finally able to start passing gas in this timeframe this was seriously such a game changer. I had some at-home nurses coming to visit me once a week to check in on me. I slowly have been upping my walking distance every day. At first I was walking .10 miles at a time and by week 3 I was walking closer to .70 miles at a time, roughly 3 miles a day. The nurses were pretty shocked that I was walking that far and told me to take it easy. I’m not very good at that, and I still continued to walk more and more. I just made sure to listen to my body. If I was tired, I stopped. I also had another appointment with my surgeon in this timeframe where they very uncomfortably yanked out my stomach tube. It was pretty painful but I was so happy to be rid of it that I didn’t even care. They also removed my staples at the same appointment, I felt like I was a free man.
Back Home – Day/Night 20-28:
I was feeling a lot better. My smaller tube scab was finally healed and my staple holes had also healed. I was just waiting on my stomach tube hole to heal. That has proven to be a little more complicated. I had a bit of scar tissue called ‘granuloma’ growing out of the wound that had to be cauterized. I’ve been doing some very light ab workouts that I looked up to try and get some muscle back so I can start working out again. I miss it so damn much and can’t wait to get back to it. I have also been walking around the house with a 5lb weight in one hand, doing 5 laps, then switching hands and doing 5 more. I have since upped it to 10lbs but I think I’ll keep it at that for a while until I’m feeling stronger.
I went into this experience weighing around 180 lbs, which was lighter than I wanted to be, but since my pancreas wasn’t breaking down food, I was already beginning to lose weight. When I left the hospital after surgery, I was 174. I’m now at home, about 6 weeks later and I weigh around 160. I’m trying to slowly gain weight but I don’t really think I can until I start exercising with weights again. But we shall see!
I’m very optimistic about the next few weeks. I’ve been seeing family and friends again, attending gatherings and walking a hell of a lot. I also mowed my lawn for the first time in 6 weeks this morning!(against my wife and families wishes) Life seems to be getting back to some form of normal and I can’t wait to get my digestion back on track as it’s still a little volatile.
So it’s been about 6 months since my surgery, I’d say around month 3 I started to really feel like myself again. The doctors prescribed me digestive enzymes to help me process and gain nutrients from food. I hoped they were a temporary thing since I need to take 3-4 pills with every meal and 1 with every snack but it seems like I’ll have to take them forever since they removed so much of my pancreas in the procedure. A small price to pay to feel 100% again. I’ve been back to exercising 5x a week and slowly increasing weight and intensity. I’ve gained back all the weight I lost and I’m now about 180 lbs. I also have no restrictions on my diet. However, I do experience the occasional discomfort if I eat food that is too oily/greasy or just eat too much, which I guess is normal for most people. I did have one night where I legitimately felt like I was getting stabbed in the stomach for about 8 hours straight. I had a big dinner out, then had ice cream. Something I will never do again. Other than that I’ve felt great.
I recently had a Neuroendocrine tumor specific PET scan to check to see if any remnants of the cancer were present, the doctor said everything looked ‘perfect.’ My wife and I cried and hugged and when I called my parents they lost it too. I was overwhelmed for a while with happiness as well as reliving how scary the experience really was, I don’t know if I’ll every really get over it.
Overall this experience was insane, scary, painful and sad. I definitely feel like I have some PTSD from it since I still cry when I talk too much about it or think too much about it. I just can’t believe it happened and its over. From diagnosis to surgery only took about 3 weeks, and recovery took a few months, and I’m already out the other side. While it felt like FOREVER in it, it seems to already be a distant, crazy memory.
I’ve come through this with a greater appreciation for my friends, family, especially my wife who was 6 months pregnant when I got my diagnosis. She’s been unbelievable with her support and positivity and I couldn’t have made it through this without her. I also want to thank the amazing surgeon, doctors and nurses at NYU Langone. You saved my life.
Remember folks, this all started with me going to the doctor because of an itchy bum!! GO TO THE DOCTOR!!!
My amazing wife Laura, my new son Milo and myself