It Wasn’t IBS—It Was A Tumor! - Jessica | Pancreatic Cancer | The Patient Story

Hi, I'm Jessica. I am from a small town in northern New Jersey. I currently live in Abilene, Texas. I am active duty in the Air Force and my diagnosis is a solid pseudopapillary neoplasm of the pancreas. A little bit about me, I have a husband and an almost two-year-old son. We have three dogs. We love hanging out at home, playing video games. We watch a lot of video game streamers, watch a lot of football, just love spending time together as a family. A lot of our time is taken up being in the military. My husband's in the Air Force as well. About a year before my diagnosis, I was having a lot of GI issues and it got so bad to the point that I had to go see a specialist and I was diagnosed with IBS. And that's just kind of what I thought I had for, it was probably about eight or nine months. And then in June of 2024, I had just dropped my son off at school and I realized I was having some upper abdominal pain. I didn't think too much of it. I've just kind of gotten used to being uncomfortable and having stomach aches and it's just part of the day-to-day now. But as I was driving to work, the pain became unbearable. I couldn't breathe. My whole body was shaking and it felt like I was having a heart attack. And I work in the medical field, so I don't want to be the one to be like, oh, make sure you're getting taken care of. And then I don't take care of myself. So I texted my husband and I said, hey, I'm taking myself to the emergency room because something isn't right. So I get to the emergency room and they immediately take me back. They run a bunch of labs and they said that they wanted to do some imaging. So I ended up getting, I got an ultrasound of my ball bladder and a CT of my abdomen. And the emergency room doctor came in and said, all your labs look great. Your ultrasound looks great. And your CT came back normal for the most part, except we see inflammation on your pancreas. And the radiologist is recommending that you get a follow-up. So it was kind of, it was scary because they still didn't really have an answer of what was going on, but it was also like, okay, you know, there's nothing immediately going on right now in this moment. That's an emergency. I'm just uncomfortable. The following Sunday, I ended up getting an MRI at the recommendation of a radiologist. And I waited a couple of days to get those results back. And it came back that it wasn't inflammation of my pancreas. It was actually a two centimeter, two and a half centimeter mass that was on the head of my pancreas. And I work in the medical field. I start Googling. I start asking the doctors that I work with and they're all trying to be rational. But I go back and I see that original GI doctor that I have established care with. And he said, okay, we're going to do an esophageal ultrasound guided biopsy of the tumor and, or the mass, they weren't calling it a tumor at that point. We'll do a biopsy of the mass and see what it comes back as. So I think it was late June. I got my first biopsy done and it came back inconclusive. It showed inflammation of my pancreas and nothing else. And again, I was like, well, there's nothing on it right now. So that's good. But also what is this thing and why can't they tell me what it is? So he said, okay, we did this biopsy. It wasn't good enough. We're going to have to do a second biopsy. And that time that one was through the actual abdominal wall into the pancreas. I remember I was home alone. Well, my son was home, but he was asleep. My husband had been in school this whole time. He was in school the whole summer while this was going on. And I'm sitting at my desk. It's eight o'clock at night and I get a phone call from my GI's office. And I remember looking at the phone and recognizing the number and thinking, well, this isn't good because no GI is calling at eight o'clock at night with good news. So I answer and he says, we got your results back. I don't want you to panic, but it shows that it's malignant. I said, okay. He said, it's called a solid pseudopapillary neoplasm, typically non-cancerous, but you need to get treatment for it because of the malignancy. I said, okay. He said, we'll get you set up with a surgeon in Dallas and we'll go from there. And it was the weirdest feeling because for the month and a half leading up to this, I was Googling and preparing and what if it's pancreatic cancer and all of these things, but it's not, it didn't hit me until that moment. Like, no, this is like, this is happening right now and we have to deal with it. We were pretty confident that there wasn't, that it hadn't spread because I had the CT and the MRI already. And a lot of the times with this type of tumor slash cancer, because some, some doctors will argue it's not a real cancer or it's not really cancer. And the amount of times that I have been told, oh, well, this isn't really cancer has been mind blowing and frustrating. But most of the time when it metastasizes, it'll be either in the liver or the spleen at the beginning stages of it. If it's left to go on for a really, really long time without treatment, it can spread to like the ovaries. Some people have had metastases on their brain, but the initial ones that are usually seen depending on the location of the tumor is the head of the, sorry, is the liver or the spleen. My surgeon in Dallas, his name is Dr. Jay Raja. He is incredible. I met him for the first time the beginning of August and I had my husband on FaceTime during the whole appointment and he explained, you know, the, the plan, what we were going to have to do going into it. And it was determined that I was going to need something called the Whipple procedure, which is where they remove part of the pancreas that has the tumor in it. They remove the beginning of the small intestine, the lower part of the stomach, the gallbladder, and then different connections within the, the digestive system. And he was like, you know, you're young. This is a really big surgery to go through being so young. We're going to do the least amount that we can while still getting everything taken out. And I do love Dr. Jay Raja. He effectively saved my life, but he was the first person to say, oh, this isn't really cancer. It's not real pancreatic cancer because it wasn't like an adenocarcinoma or, you know, the, the typical scary pancreatic cancers that people think of. We got to the hospital bright and early, as soon as the doors open. And I got all checked in. I was visited by felt like every nurse and every doctor and every anesthesia, anesthesiologist on the whole hospital. They had told me it was going to be about a six hour process. So from the time that I got checked in to the time that they wheeled me out of the OR, it was about six and a half hours. The surgery itself was about four and they said that everything went according to plan. They ended up doing the full Whipple. When I had originally had my consultation, it was offered to me to have the surgery done robotically or laparoscopically. And he had said, well, there's a chance that we're going to have to open you up anyway, just a heads up. And I was like, well, can I just choose to get it done open to begin with so that you're not doing things that are unnecessary. So they did. I have an incision on my abdomen. It's about six to seven inches from like mid. Yeah, I would say like mid stomach, almost down to my belly button. But they took they took everything that we expected them to take. And then they also took just over 20 lymph nodes for testing. And they were able to test all of all of the things. And thankfully, all the lymph nodes came back clear. The part of my stomach that they took came back clear and the staging was done. So it was staged as one B pseudopapillary. I spent about seven days in the hospital after my surgery. I had some complications during recovery. I had gotten sick and they didn't know if it was like pneumonia or bronchitis. And so I was really scared that that was going to extend my my hospital stay. But thankfully, I was able to get IV antibiotics and all that kind of stuff. Recovery in the hospital wasn't too bad. Thankfully, and all the nurses and doctors said that it was because I'm young and usually people that get this surgery are older. And so it was easier for my body to get used to a new way of functioning and also healing. So besides getting sick, it really it really wasn't bad. I was up and walking the day after surgery. I'm doing laps around the hospital and trying to trying to not be in my room because it was really weird because I was the youngest one on the floor that I was on. And it was a really just a weird feeling being around people who are so sick and then realizing I'm sick too. I do belong here because I'm being taken care of. But after seven days, I was released. I came back home. I had to eat the most bland, sad foods you could think of for like three weeks. It was a lot of beyond the physical healing of it. It was a lot of mental, mental healing and realizing there was the before and now there's the after and just learning kind of the new normal of day to day life, which was hard. Still doing it. I will say that during from the time that I found out that there was a mass on my pancreas to the day before surgery, it was a lot of having to be analytical and logical because I was still a mom. I was still a wife. I was still in the military. I still had a job to do in all those different aspects of life. And so it was like, OK, well, I have to go to this appointment and then this is going to happen. Then I'm going to get surgery and then I'm going to, you know, it was I had to have a plan for everything and not really think about how it was affecting me because I couldn't I didn't have the time to. I really didn't. Start to process how I was feeling until after I got home from surgery and. You know, my my in-laws had come down to help take care of me and my husband had gotten home from school. And so I had the support where I didn't have to be worried about taking care of my son and I didn't have to worry about anyone else's emotional needs. And I was off of work, but it was I had to really work on giving myself grace and allowing myself to be angry and sad and frustrated. The biggest way that I've been able to deal with it is talking to my husband and talking to my family. My little brother has chronic health issues and my mom is his caregiver. So she she understands the struggle and the emotional burden that health problems take on somebody. And so a lot of it has just been talking through my feelings and allowing myself to feel the feelings and understand that I'm not being I'm not being overdramatic. I'm not taking things too far. Like I did have this very traumatic thing happen to me that I'm still dealing with the after effects of. And yeah, it's okay to be upset and it's okay to be vulnerable with people and let people know how you're feeling and putting up boundaries in your life. That was another big thing was letting people know, hey, I don't have the mental capacity for whatever right now. I found it really hard to be empathetic towards people. And so being able to say, hey, I understand that you're going through something right now. I'm probably not the best person to talk to about it because I just don't have the bandwidth. Yeah, it was it was hard at the beginning, but it's gotten a lot easier to to open up about how I feel. I'm getting blood work every three to six months right now, and then scans are scheduled to be every six months. The blood work is really important because after the Whipple, the body has a hard time absorbing nutrients. So I am nutritionally iron deficient. So I have anemia. I just have to get an iron infusion because my body just can't absorb iron. Vitamin B is another big one. So I have to take vitamin B 12 supplements. And so the blood work every three to six months is just to monitor those levels to make sure that the supplements that I take are doing their job. Scans are going to be every six months to a year for the next five years. Recurrence is not they. The hard thing is there's not a lot of research on solid pseudo papillary neoplasms right now, so it's hard for them to say anything about them. So right now the plan is for the next five years, but there might be research that comes out that shows that I need to be surveilled for longer than that. But that's the plan right now. Thankfully, no chemo or radiation, which is an absolute blessing. They did not do genetic testing on the mass itself. I had asked them about it and they said, oh, no, we're we're not going to do it on the mass. But I actually just had genetic testing done on myself to see if they could find a cause. And they said that it was not genetic. So this was just bad luck. One of the most valuable resources that I found has been the community on the Internet, specifically on Reddit, which I know is like a weird thing to think about. But there is a huge pancreatic cancer support system on Reddit, and the people on there are so kind. And it was nice to know that there's a group of people who will be there commenting, sending support in a second if you needed it. But on the other side of that, the page is heartbreaking because you read stories about people who either they're the patient or the patient is a loved one. And they're like at the at the end of the line with treatments and chemo and radiation. And, you know, they're they say by the time they were diagnosed, they only had a month left. And I'm reading this as a 26 year old female who is now perfectly, perfectly healthy. And it's like, I, I'm not going through that. I don't have to go through that. How like how is it fair for me to be kind of like I was saying before, how is it fair for me to be upset and be sad and be angry at the world when there are people who are going through so much worse? Like I've gotten into the habit of not saying, oh, I had cancer because I feel like I didn't. I feel like people get the wrong idea and it'll, you know, well, why do you still have hair? What what all have you done? You know, having to answer all the questions. And that that's where the where the imposter syndrome comes in, because as the months have passed, I'm realizing not everyone's cancer story is the same. There are other types of cancer where all a person needs is surgery, but it's still very much so a real cancer and a real health threat. And it's something that they're going to have to live with for the rest of their lives. And it's going to be part of who they are and part of their story. And so that's something that has taken me a while to to get past and understand that not everyone's story looks exactly the same. It's the same thing with the survivorship. I, I read these stories of people who are stage four when they're diagnosed. Even with the type of cancer that I had, there are people who who go a very long time without getting diagnosed, and by the time they get diagnosed, their tumors are inoperable or they they've spread or they have complications. And. It's been really hard for me to understand, like, why, why was it so easy for me? If I could go back and tell myself one thing, it would be that my feelings are valid. Like you, you can feel however you need to feel when you're going through a cancer journey. There's no cookie cutter way of processing feelings. It really is like grieving. You're grieving for your previous self. You're grieving for other people in your family. There's going to be a lot of different emotions and they're all valid. And it's important to allow yourself to feel it and give yourself the space that you need to. Have your, have your breakdowns, have your, have your cry a day, have your five cries a day. It's, it's important to understand how you're feeling because it'll manifest in worse ways and it can have an even more detrimental effect on your health in the long run. And I think also I, I really want people to realize that even if it's something little, like if the feeling, the symptom that you're having, it's just a headache or it's just a stomach ache, it's just a cough, get seen for it. Just mention it because it could turn out to be something a lot bigger than it is.