DESCRIPTION
Cynthia Mitchell has been diagnosed with intraheptic cholangiocarcinoma, a type of bile duct cancer. Her story is about how she, like many with such a diagnosis, never attained complete survivorship, but is living a rich, fruitful life. In 2021, she experienced severe heartburn. When it persisted, she underwent an ultrasound, which revealed a large mass on her liver. Further tests determined Cynthia had cholangiocarcinoma just before Christmas Day, and she had a liver resection scheduled for January 2022. The procedure was a success, but had a recurrence the following summer and it was Stage IV. Cynthia then went on a regimen of oral chemotherapy. She took capecitabine, also known as xelota. The regimen was very difficult. Cynthia was told she will never achieve full-on survivorship, but she is able to do exercise on a limited basis and leads a happy life with her husband and two children.
Prior to her diagnosis, Cynthia enjoyed great health in Winnipeg, Manitoba, Canada. She ran, engaged in aerobics and weight training. However, in 2021, she began to experience severe heartburn, followed by acute right quadrant pain. She saw her primary care physician who dismissed her pain as symptoms of menopause. When the problems persisted, she went in for an ultrasound, which showed a large mass on her liver. A subsequent CT scan confirmed what looked like a metastatic lesion. Then just before Christmas that year, a liver surgeon examined an MRI, said it was cholangiocarcinoma, and scheduled a liver resection for the following month. The surgery went well. She had clean margins, no lymph node involvement, and at that time it was confirmed Cynthia had intrahepatic cholangiocarcinoma.
Her care team said she had a 20 percent chance of survival for five years, which under the circumstances was considered a high rate. In March 2022, Cynthia went on a regimen of oral chemotherapy, with capecitabine. Even though oral chemo is not supposed to be as traumatic as other types, she suffered all the side effects tied to chemotherapy, such as nausea, fatigue, cognitive issues and hair loss, all this while she trying to raise two children.
Cynthia got through that regimen and is now on a less difficult targeted therapy. If her health was 100 percent before her diagnosis, she says health is now between 85 and 90 percent. She cannot exercise as strenuously as she once did, but says she can talk her dogs for a walk, sometimes as many as ten kilometers a day. Cynthia knows that now and going forward, she will have certain limitations, but is very grateful to live what she calls a full life.
Additional Resources:
Support Group:
Canadian Cholangiocarcinoma Collaborative: https://www.cholangioma.ca
TRANSCRIPT
Cynthia Mitchell
Bruce Morton: Very few people diagnosed with bile duct cancer go on to survivorship. This is the Cancer Interviews podcast, and I am your host, Bruce Morton. Our guest on this episode with a type of bile duct cancer, Stage IV, and while she has not survived, she carries on with an active lifestyle. She is Cynthia Mitchell, of Winnipeg, Manitoba, Canada. This is her story, and it’s time to hear it, so, Cynthia, welcome to Cancer Interviews.
Cynthia Mitchell: Thank you, Bruce. Thanks for having me.
BM: It is our custom to start out the same way with all of our guests, and that is to learn about their lives, the part that has nothing to do with cancer. So, if you would, tell us a bit about where you are from, what you have done for work and what you like to do for fun.
CM: As you said, I am from Winnipeg, Manitoba, Canada. I am a mother to two wonderful children, and I am married to an amazing man. We have two dogs and two cats, and we are very active with our dogs. In my career, I have spent the last twenty years on and off teaching elementary school. For fun, we love to travel, whether it is a winter getaway or a summer adventure, we are up for fun together.
BM: Cynthia, all of us who have survived cancer, experienced that point in time when things regarding our health changed for the worse, which set in motion a chain of events leading to a diagnosis. For you, what was that moment like?
CM: It would have been in the summer of 2021 I had started experiencing some light heartburn, but it was persistent. I also had what I would call acute right quadrant pain and that prompted m scheduling a visit with primary care physician. When I saw my physician, it was dismissed as symptoms of menopause. I was told to monitor and to return if it continued. I went home and it just didn’t sit well with me, so I called and said I would like another appointment. When I went back my physician agreed to order an ultrasound to at the very least rule out any issues.
BM: And the ultrasound revealed what?
CM: Unfortunately, it revealed that there was a large mass on my liver. That started a long and complicated chain of events. At that point they ordered a CT scan of my liver, and it confirmed what looked like a metastatic lesion. They thought I had a cancer that had originated somewhere else in my body. That’s when I first heard the word ‘cancer.’ So, over the next few months, that was fall of 2021 into winter of 2022, I went through a series of tests, CTs, MRIs, endoscopies, colonoscopies, mammograms, in search of the original of that primary tumor. It wasn’t until December of 2021 that a liver surgeon took a look at my MRI and said he was pretty confident this was cholangiocarcinoma. That was just a few days before Christmas 2021, and he scheduled me for a liver resection in January of 2022.
BM: We’re confident you’ll be able to learn some tips and tools to help you through your 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 Subscribe button below and click on the bell icon, so you will be notified the next time we release a cancer interview. And if 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 Before I Got Cancer.” Finally, we want to remind you that we are not distributors of medical advice. If you seek medical advice, please contact a licensed health care professional.
Cynthia, you had mentioned these months that went by in which doctors thought you had cancer, but didn’t specify which type. How disconcerting was that?
CM: It was quite disconcerting. I think a cancer diagnosis in itself is a lot to process, but learning you have cancer, but they are not sure where it originates from adds another layer of complexity to the diagnosis. Those were approximately three months of processing the diagnosis, but also in search of the source.
BM: When the process moved along until you received a specific diagnosis, what was it?
CM: Once I had my resection in January 2022, they confirmed that it was interhepatic cholangiocarcinoma. They were confident, based on the pathology, that that’s what it was.
BM: And what did they say about your chances of survival?
CM: At that point, because I had had a successful resection, I had clean margins and I had no lymph node involvement, they thought my chances of survival were high. Now when they talk about high chances of survival, we are looking at a 20 percent chance of survival for five years. So, everyone on my care team felt very happy, but 20 percent to me didn’t sound all that exciting. I mean, I was very grateful to have successful surgery, but 20 percent did not sound very significant.
BM: We had mentioned at the very top, bile duct cancer. You said you were diagnosed with intrahepatic cholangiocarcinoma. Can you differentiate between your diagnosis and other types of bile duct cancer?
CM: So, there are two types of bile duct cancer. There are biliary tract cancer, which would include gall bladder cancer as well as extrahepatic bile duct cancer and then intrahepatic bile duct cancer. The difference between gall bladder cancer and bile duct cancer is that the gall bladder cancer originates in the cell of the gall bladder and bile duct cancer originates in the cell of the bile duct. So, with my specific type of bile duct cancer, which is intrahepatic, it originates within the bile ducts within the liver, whereas in extrahepatic it originates in the bile ducts outside the liver.
BM: Cynthia, every type of cancer is still cancer, but each has its own idiosyncrasies. I am a survivor of prostate cancer, and for most guys, prostate cancer offers a variety of treatment options; but what about cholangiocarcinoma? Did you have many treatment options, or was it pretty cut and dried, that you had but one option in terms of treatment?
CM: It is fairly limited, specifically in Canada. We are seeing a lot of emerging research, we are seeing clinical trials, we are seeing a focus on precision medicine, looking at molecular testing and various targeted therapies, but for me in 2022, there were very limited options. After my surgery, I started what they called an oral chemotherapy. I began that in March 2022, and I did that for five months before I had a recurrence in the summer of 2022.
BM: I have heard, and I say this as someone who has never had to go through chemotherapy, that the oral chemotherapy is not as traumatic as other types; but for you, what was the toughest part of your chemotherapy regimen?
CM: I took capecitabine, also known as xelota, and unfortunately, I had every side effect you could imagine possible. I would say even though it was oral, out of all the medications I took, it was the most challenging for me. There was peeling of my hands and feet. The gastric issues were very intense and then the fatigue that came with it. I have had other oral therapies that have been more pleasant than my chemo infusion therapies, but the xelota, I did not tolerate very well.
BM: And how difficult was the fatigue, the cognitive issues, everything else, while you were trying to raise two children?
CM: I think that presents another set of challenges for anyone battling cancer while being a mom. After had my resection, we were still in the thick of COVID, so we were doing our best to isolate until we knew that was well enough. My children stayed at home for a period as well, so we were schooling them from home, so, it was very challenging.
BM: Cynthia, we mentioned at the top that there are very few people who attain full-on survivorship from cholangiocarcinoma. You have said that you haven’t gotten to survivorship, and likely never will. Mentally, emotionally, how do you deal with that?
CM: That was a very challenging thought to wrap my head around. I committed to myself that I would take more of a radical acceptance approach, and that I would live for today and that whatever might happen, might happen, and we dealt with it when I did have a reoccurrence in the summer of 2022 shortly after the resection. It was a devastating blow, but I think because I had a good idea or an understanding it may happen, we were ready to move forward with whatever steps were to come forward next.
BM: Think back to where your health was prior to your diagnosis. Let’s call that 100 percent. These days, physically, how close is your health to what it was, pre-diagnosis?
CM: I am happy to say my health is about 85 to 90 percent of what it was before cancer. I used to do aerobics, weight training, go for a run, and I cannot do those things today; but I can take my dogs for a walk, sometimes up to ten km a day. I am very active with my kids. We bike, hike, my husband and I. I still live quite fully. It’s just that I understand I have certain limitations I didn’t have before, but I enjoy the things that I am doing now just as much as I did prior to diagnosis.
BM: Cynthia, for a moment, try to put yourself in the shoes of somebody who has been diagnosed with bile duct cancer or a type of bile duct cancer. Shouldn’t this person derive some measure of inspiration from your story?
CM: I would hope so. I would hope that someone can listen to the story of someone else who is living an experience they are also living and that there are still opportunities for optimism and hope that the life that you are living doesn’t necessarily end with cancer. It just changes. I am in a position in which I can say that easier than others because I am on a therapy that is keeping me stable, and it is another oral therapy that hasn’t been too challenging.
BM: The oral therapy you are on now. What is that?
CM: I am on a targeted therapy. It is an oral therapy, and it is based on a mutation, targetable mutation that was discovered in some molecular testing that I had done in the spring of 2023. Throughout the years, I have had a number of molecular tests in attempts to find actual mutations and we were fortunate to find a mutation that is very common in lung cancer patients that has a drug that is well-researched and used in practice and able t secure funding for it, and it has kept me stable.
BM: The fight against cholangiocarcinoma begins with research. You have immersed yourself in this fight. Based on what you know, what can you tell us about how cholangiocarcinoma research is trending?
CM: I have to say it is remarkable, the speed at which the research is happening. It brings such great hope to see what’s on the horizon. My diagnosis was in the fall of 2021, and the difference to what exists now compared to what existed then, is remarkable. So, knowing what has changed in the last three years, I can only imagine what we will see in the next five. I mentioned hope, and that’s where we find our hope, in the research.
BM: That’s gonna wrap it up. We really appreciate hearing your story. I is very inspirational to hear that, yes, you have been diagnosed with bile duct cancer, you have not survived in full, but you are able to go on with a fruitful physical existence and yo are there for your family, and nder the circumstances, life is about as good as it can be.
CM: Oh, truthfully. I have to say that I am extremely grateful for the life that I have. I am living a very happy and joyful and love-filled life with my family, yes.
BM: Cynthia, thanks very much for being with us on Cancer Interviews.
CM: Thanks so much for having me. I really appreciate it.
BM: That’s going to wrap up this episode of the Cancer Interviews podcast, and as we always say when we conclude, that if you or a loved one are on a cancer journey, you are not alone. There are people out there like Cynthia, organizations like the Canadian Cholangiocarcinoma Collaborative, that can be of help, that can ease your cancer journey. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
Canadian Cholangiocarcinoma Collaborative: https://www.cholangio.ca
SHOW NOTES
TITLE: Cynthia Mitchell, Bile Duct Cancer – Winnipeg, Manitoba, Canada
In 2021, Cynthia Mitchell experienced heartburn. This might not have been a problem, but the heartburn persisted. She eventually underwent an ultrasound, which revealed a mass on her liver. Further tests revealed she had Stage 2B Intrahepatic Cholangiocarcinoma, a form of bile duct cancer. Cynthia underwent a successful surgical procedure, a liver resection, but a year later, the cancer came back, and it was restaged as Stage 4. She took Xelota, an oral chemotherapy. The cancer was brought under control, but she has learned the cholangiocarcinoma will always be with her. Cynthia is not as physically active as she was before her diagnosis, but she still is able to exercise and leads a happy life with her husband and two children.
Additional Resources:
Support Group:
Canadian Cholangiocarcinoma Collaborative: www.cholangiocarcinoma.ca
01:50 Cynthia’s journey began when she experienced persistent heartburn.
02:50 Results of a subsequent ultrasound revealed a mass on her liver, a metastatic lesion.
03:57 She learned she had cholangiocarcinoma, necessitating a liver resection.
06:25 She was told her chances of five-year survival were listed at 20 percent.
07:28 Cynthia explains how Intrahepatic Cholangiocarcinoma is different from other forms of bile duct cancer.
08:36 Said her treatment options included oral chemotherapy.
10:00 Her oral chemotherapy was capecitabine, also known as xelota, which was difficult.
12:21 Explains how she dealt with learning she would never fully survive.
13:41 Cynthia is asked how her health today compares to how it was, pre-diagnosis.
20:35 Says she is excited about the increased research for cholangiocarcinoma.
KEYWORDS (tags):
bile duct cancer
intrahepatic cholangiocarcinoma
liver resection
capecitabine
cynthia mitchell
xelota
gall bladder cancer
oral chemotherapy
bruce morton
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