When Celeste Guptill noticed her stomach appearing swollen to an unusual degree, she thought it might be due some sort of gastrointestinal issue. However, a CT scan showed she a tumor that produced a fluid called mucin, which produced the swelling. The tumor was surgically removed, which led to a diagnosis of pseduomyxoma peritonei, a rare form of appendix cancer. She needed a second surgery, called HIPEC, which includes heated chemotherapy. The recovery from the chemotherapy was much than the procedure itself, but Celeste achieved survivorship, and has happily gone back to being a mother of eleven.
Celeste Guptill of Keizer, Oregon had just had her tenth child and was posing for a family photo shoot. Upon seeing the photo, she noticed that her stomach area seemed more swollen than usual. At first, she thought she this was a result of aging, as she was turning 40, that or something gastrointestinal. But she could feel something abnormal in her stomach and decided to get it checked. That led to a CI scan, which revealed a tumor. Celeste’s primary care physician referred her to a gynecologist, who said she couldn’t treat the tumor because it appeared cancerous. She next saw an oncologist at Oregon Health Sciences University in nearby Portland, who said the tumor needed to be surgically removed and biopsied to find out what kind of cancer it was.
At first, doctors thought it was ovarian cancer, but after the biopsy, they couldn’t figure out what type it was. They eventually confirmed it was pseduomyxoma peritonei, a rare form of appendix cancer, also known as PMP. They initially proposed a hysterectomy, because without one, the cancer could spread, but Celeste opposed the idea, and the idea of the hysterectomy was shelved.
Celeste located a PMP specialist at MD Anderson in Houston, and decided to get treated there. After a six-month waiting period, she underwent a step procedure called HIPEC. It included what is known as heated chemotherapy, administered while under a general anesthetic. The procedure removed most of the omentum, where a lot of abdominal cancers originate. They go in and scrape, remove everything cancerous, then seal the area back up.
Celeste said the recovery was very painful. She had tubes in her, through which surgical debris was removed, she was creeped out by her normally dry skin becoming “greasy and waxy,” and she experienced some hair loss. However, the doctor said the surgery was a success, as it was able to remove all of the cancer.
Celeste Guptill has achieved survivorship, claiming that physically she can do everything she could do prior to her diagnosis. Because she did not have her uterus removed, she went on to have an eleventh child, which she calls her miracle baby.
Additional Resources:
Support Group:
PMP Pals: https://pmppals.net
TRANSCRIPTION
Bruce Morton: This is the Cancer Interviews podcast, and I am your host, Bruce Morton. Our guest has been through quite a bit. Celeste Guptill of Keizer, Oregon was diagnosed with pseudomyxoma peritonei, a rare form of appendix cancer. Celeste reached survivorship, but not before undergoing two surgical procedures for the removal of among others, a football-sized tumor on her right ovary. Now it’s time to hear her story, and here she is. Celeste, welcome to Cancer Interviews.
Celeste Guptill: Yeah, it’s good to be here.
BM: Celeste, it is our custom to learn a bit about our guests before we hear about their cancer journeys. If you would, tell us a bit about where you are from, what you do for work and what you do for fun.
CG: Okay, well, I’m a mom primarily; I have my fourth grandbaby due in two weeks. My husband and I have eleven kids which is not typical. I had had ten when we had started this journey, so my tenth baby was only a couple months old when they diagnosed me the first time, which was pretty emotional and traumatic. We have had`one more since then, which was part of my story, my miracle baby, and she likes to tell people she is a miracle, so that’s a little bit about us.
BM: For all of us cancer survivors, our health appeared to be good until it wasn’t. In your case, when did things start to go sideways?
CG: It was directly after the birth of my son, my tenth child. I had had`nine other kids and I had always expected certain things and after him, we did a family photo shoot, and I thought my stomach area looked unusually swollen than it had in the past. I thought maybe it was just a process of me getting older. I was reaching 40 by then and maybe my body just doesn’t want to bounce back like it had, prior to that; but I started having a feeling around my stomach I could feel the tumor even though at the time I didn’t know it was a tumor. I thought this felt odd, like it doesn’t belong here. I put off addressing it for a while, thinking I was having some gastrointestinal problems, something like that, some bloating issues, but I had no idea at the time. I ended up finally telling our older kids that something is not right, I don’t know what it is. I was just hoping it was some complication from after birth, but I need to get it checked out. So, I went to get it looked at and they did a CT scan and confirmed there was a tumor and that that’s what I had been feeling. There were some other fluids. I guess tumors will produce certain things, and mine was producing this mucin. Then they referred me to a gynecologist, who said she couldn’t do anything about this because it is cancer. As soon as you hear those words, your head just goes, “Not me! Not my life!” That was just really unnerving. I came home pretty shaken up, coming home and telling my kids I think I have cancer. At the time I didn’t have any idea what kind of cancer. It wasn’t until I got another appointment with an oncologist at OHSU, she looked at all the things and she said surgery was needed to remove the tumor and biopsy it. Before surgery, they said it looks like it could be ovarian cancer, which is not what one would expect from someone who has had ten kids. Every time you have a baby, they say your risk of ovarian cancer goes down, so that was pretty surprising. The doctor was reluctant to say that’s what it was, but for all the symptoms, that’s the direction in which it pointed. It wasn’t until after they removed everything that she said she didn’t know how to accurately describe the tumor. It spreads different from most of the cancers we deal with.
BM: I would imagine that would be kind of a double whammy. You have been diagnosed with cancer, but doctors cannot tell you what kind. I suspect, Celeste, that would add a great deal of uncertainty.
CG: Yes, definitely. I had to imagine what the next year would be like. I had two daughters graduating from college. We had all these family things going and here this gets laid in our laps. We were wondering what to do next. Whenever they confirmed it was pseduomyxoma peritoeni, or as we call it, PMP appendix cancer is what we call it. I was actually able to get in contact with a Facebook page pretty quick and be able to ask some questions. I felt like I was pretty calm, but when your mind feels like it is trying to do a good job, but your body is under a lot of stress, I don’t think I realized just how much I was shouldering.
BM: We’re confident you’ll be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends. Kindly click on the bell icon, so you will be notified the next time we post an interview. And f you or a loved one are facing a cancer diagnosis, please click on the link in the Description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.” We also want to remind you we are not purveyors of medical advice. If you seek medical advice, please contact a licensed healthcare professional.
Celeste, you referred to OHSU, Oregon Health Sciences University in Portland, about an hour north of where you live. So, you found that you have this rare type of cancer, and I suspect surgery was next. Tell us about the procedure and what it sought to do.
CG: Yeah, it was just to biopsy what was in there with the tumor. It was pretty emotional because I had just had a baby. I was nursing her as I had nursed my other children. I wanted to continue doing that. My oncologist was fantastic. She was a mom as well, so she was really sympathetic to where I was at. When I was in recovery, she actually put me on the maternity floor just so they would be extra sympathetic to my wanting to get back with my baby. My doctor told me they had planned to do a hysterectomy, which could also make the recovery more difficult and that was a piece that was a bit of a miracle. This was pre-COVID, so I was able to have lots of friends and family visit me. The doctor was trying to decide whether she should take my uterus, and I was on the operating table, she came out and consulted with my family. She said it didn’t look like the cancer was in my uterus, but she was reluctant to leave it in because if the cancer had spread to the uterus, the cancer could spread. My family just started praying and the doctor decided to keep my uterus, which was great, and we ended up naming my daughter after my oncologist, and felt the whole thing was a miracle.
BM: Celeste, it sounds like it was an easy call for you emotionally to lobby to keep your uterus; but from a physical perspective, was it kind of a roll of the dice?
CG: Not the first time. I think the first time I knew that she was gynecological oncologist and that she had seen a lot of this. She knew that she had our blessing if she suddenly saw anything wrong that would cause her to change her mind. We had signed all the papers, but it was going to make the first year for my son all the more difficult. I also knew that the doctor, being a mom, that her perspective was really sympathetic to where I was at, and you know, I still wanted to nurse him. I think she had a really balanced perspective of saying there was a risk with keeping the uterus. I don’t want to get to far ahead, but when we did end up going to MD Anderson for treatment there, the doctors at MD Anderson said they were so thankful my doctor didn’t remove the uterus because oftentimes, doctors who think it is ovarian cancer treat it really differently than PNP. They were thankful because if my oncologist in Oregon had done the hysterectomy, they would not have done it right and there would have been a greater degree of spread.
BM: Celeste, I want to get to the part of your journey that takes place at MD Anderson, but if you would, describe your post-surgery diagnosis in January 2019. What did that entail?
CG: That’s when she, my OHSU doctor, first mentioned that it was a cancer that wasn’t really a cancer. I didn’t really understand it. We had gotten all of the pathology back, and she is trying to explain it, and said because it was this type of appendix cancer, it doesn’t spread through lymph nodes the way that other cancers do. It instead remains in the abdominal cavity, and it spreads through the mucin and having all the buildup of mucin. That’s actually the way the tumors spread. She had never treated anything like that and tried to refer me to other people as OHSU didn’t have anyone who could treat this. A friend said I needed to go to MD Anderson in Houston to get a specialist. When I went to the PMP Facebook page, people on the page urged me to see a specialist. There was a gal up in Seattle, who had written a book about fighting the insurance companies when seeking out-of-state care as I was doing. Insurance companies don’t want to pay for patients getting the best treatment. They just want to meet their budget. For me, it was a fight at first, but with a referral from my doctor at OHSU, being treated at MD Anderson got approval from my carrier.
BM: It sounds like your decision to go to MD Anderson, which as cancer hospitals go, is in the big leagues, was an easy call. What procedure awaited you at MD Anderson?
CG: When we got to MD Anderson, I thought they would want to do another surgery right away, but they said this was a slow-growing cancer, so the doctor there said it would be better for my body if it had a little bit of time to recover before another procedure. So, they recommended six months. Before that, they did all my initial labs and blood work, which is another odd thing about PMP. Blood levels aren’t the same as with other cancers. They did another CT scan to see if there was anything cancerous remaining from the first surgery. The first thing they told me was that most of the omentum was removed, which I had never heard of until this surgery. It is sort of this fatty layer, where men as they get older get a beer belly. The omentum is where a lot of abdominal cancers originate, and the MD Anderson doctors said the OHSU docs took a risk by not removing all of the omentum. What they recommended was to do HIPEC, who is a two-step procedure centered around the abdominal cavity. It includes a heated chemotherapy treatment. It is like 104 degrees. After they scraped everything and gotten the cancer, then they seal it back up. The operating table actually moves during the procedure while you’re under and they do this for a number of hours, I think the average is 12 to 14 hours because they want this heated chemo to basically kill off any cancer that might have been left over from the first procedure. Then they open it back up, wash all the organs and check one more time before they do the sealing up. They advocated for HIPEC because they said without it, the cancer could spread to this organ or that organ. They’re telling you all these things and you sign four pages of paperwork acknowledging the bad possibilities. So, we had to go home and wait six months. That was the beginning of our journey at MD Anderson.
BM: I want to address this in chronological order, Celeste. I want to talk about the procedure, but before that, there was a six-month waiting period. How difficult was it knowing that you were in Oregon, your care team was in Houston and there was this complicated procedure hanging over your head and you had six months to think about it?
CG: I think for me, it was really, really important that all of my doctors were communicating with each other. I made sure my primary care physician knew what was going on, I signed all the documents, I just wanted to make sure everybody in Oregon and Texas were on the same page. We just felt like we were in really good hands. Everyone was just really sympathetic to where we were at. We`loved MD Anderson, and that gave us a lot of peace of mind.
BM: You brought up the HIPEC procedure itself, but you brought up a term I for one have never heard over the 125 or so interviews we have done, and that is heated chemotherapy. Can you tell us more about what that entails?
CG: It is a pretty rigorous recovery. I didn’t notice the chemo itself because I was under a general anesthetic and was completely out. They did video tape it and they were willing to show me photos, which I wanted to see because I like anatomy and that sort of thing. I was asleep so I didn’t notice that part. In the aftermath, they told me I couldn’t eat right away. I didn’t know how extensive these things were going to be, so you get an NG tube, in which they filter the gunk from your stomach and out through your nose. It was very painful for me, and then they have tubes in your chest space. That’s when I found out my ribs were especially thin, so they used the smallest tube that they possibly could, but I still had my lung collapse. That was sort of unexpected. I think it was Day Three before I was cognizant of conversations we had, so the recovery was hard. In addition, you get this clammy skin, which they said was tied to the chemo, and that lasted for a while. You felt like your skin had this greasy, waxy feeling, which was unusual for me because I have dry skin. It felt strange and you do lose a percentage of your hair. Different people lose different amounts. They said it is not necessarily from the chemo, but from the trauma that your body has gone through.
BM: Despite all that, it sounds like the HIPEC procedure was a success.
CG: Definitely. The doctor said that immediately he had been able to find the tumors, which again, was such a great reason to see a specialist. He knew exactly what he was looking for. My husband pressed him on that because we had heard horror stories from people who had gone to inexperienced doctors and were really just kind of doing experiments on their patients and trying to do the best they could. In the aftermath, he showed my husband those photos of the procedure and could point to specific areas where they had gotten rid of the tumors. They were a really incredible team. I ended up not losing organs that would have made lifelong recovery very difficult. Where the cancer decides to embed itself can affect one’s recovery.
BM: We’re happy to report you have achieved survivorship. You are more than five years removed from this, so I have to ask, physically, Celeste, is there anything you cannot do today that you could do, pre-diagnosis?
CG: I don’t think so.
BM: Excellent! You had been diagnosed with a rare cancer. It sounds like you were able to check both boxes in that you were able to identify a good care team, which you know is easier said than done, and did have a source of support, which is not always the case for people diagnosed with rare cancers. Now we are going to wrap up, and we are going to wrap up the way we always do. If you encountered someone diagnosed with PMP or any other type of rare cancer, this person might have lots of questions and you might have lots of answers, but if there is one point you would want to make, one thing you want to make sure this other individual remembered, what would it be?
CG: I think the biggest thing would be my original oncologist telling me that treatment of my type of cancer was outside the scope of her expertise, that she did need to consult with other physicians to see how to move forward. I think a lot of them say they think they can figure it out. The part of my experience that really gave me confidence was getting a specialist. There is a website called PMP Pals. They have a list that they are constantly updating that includes specialists in this field, but it hard to get funding for this type of cancer because it is rare, so if patients can look up some kind of support that provides specialists for their type of rare cancer, that is very important.
BM: Excellent. Celeste, thanks very much for sharing your story. It is one that if somebody is diagnosed with PNP or even another type of rare cancer, yours is a story that should be uplifting and informative in terms of finding the right care and locating the necessary support, so, Celeste Guptill, Keizer, Oregon, thanks so much for being with us on Cancer Interviews.
CG: Thanks so much. Thanks for inviting me.
BM: And we’ll remind you as we always do when we close, if you or a loved one are on a cancer journey, you are not alone. There are people out there like Celeste, who have information that can be of immense help. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
PMP Pals: https://pmppals.net
SHOW NOTES
TITLE: Celeste Guptill, Pseudomyxoma Peritonei Survivor – Keizer, Oregon, USA
When Celeste Guptill believed her stomach was swollen a bit more than usual following the birth of her tenth child, she thought it might be due to age or some sort of gastrointestinal issue. However, a CT scan revealed a tumor leading to a diagnosis of pseudomyxoma peritonei (PMP), a rare type of appendix cancer. The tumor was surgically removed, but Celeste was fortunate to find a specialist who performed a second procedure called HIPEC, which included heated chemotherapy. Cancer-free for more than five years, Celeste says that physically, she can do everything she could do prior to her diagnosis.
Additional Resources:
PMP Pals: https://pmppals.net
02:05 Celeste noticed she felt unusually bloated.
03:35 A CT scan revealed a tumor.
04:35 Surgery was needed to remove the tumor to see if it was cancerous.
05:18 Once the tumor was removed, the doctor couldn’t figure out what kind of cancer it was.
09:15 After surgery, doctors considered performing a hysterectomy.
10:38 Celeste talks about her decision to avoid a hysterectomy.
13:06 Describes her second diagnosis in January 2019.
15:15 When she went to MD Anderson, doctors recommended a six-month wait before her second surgical procedure.
16:40 MD Anderson suggested a procedure called HIPEC.
21:07 Celeste describes heated chemotherapy.
23:36 Says the HIPEC procedure was a success.
27:02 Says for anyone diagnosed with a rare cancer, it is so important to be treated by a specialist.
KEYWORDS (tags):
appendix cancer
pseudomyxoma peritonei
omentum
celeste guptill
hysterectomy
hipec
mucin
heated chemotherapy
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