DESCRIPTION
After a long list of health issues, Karen Humphries was diagnosed with a rare type of bile duct cancer called cholangiocarcinoma. She was initially diagnosed in 2021 with Stage 2B gallbladder cancer, had her gallbladder removed, after which the diagnosis was changed to Stage 4 cholangiocarcinoma. Karen underwent a two-part liver resection and a chemotherapy regimen and went into remission. Two years later, she was again diagnosed with cholangiocarcinoma. Her treatment included biliary stents.. Karen knows her cancer is incurable but has survived and leads a happy life.
Karen Humphries’ life has been marred by numerous health-related issues. Because of a rare genetic condition, in 2010, she had to wear a colostomy bag. A decade later, she experienced severe vomiting, pale colored stools, an inability to eat solid foods, pain in her right-side ovaries, among others.
She sought medical attention and got a gallbladder scan. That led to the removal of her gallbladder and a diagnosis of Stage 2B gallbladder cancer. The diagnosis was later revised as cholangiocarcinoma, a rare form of bile duct cancer.
Karen underwent a two-part liver resection, appendix and radical lymph node abstraction, and a six-month chemotherapy regimen with xeloda. She responded well and went into remission.
However, in 2023, after biopsies of her neck and liver, the cholangiocarcinoma returned. Doctors told her that her initial diagnosis of Stage 2B gallbladder cancer was actually Stage 4 cholangiocarinoma all along. Her treatment included biliary stents.
Karen’s cancer has been labeled ‘incurable,’ but she undergoes periodic CT and PET scans, and her condition has stabilized. She maintains an upbeat approach to life and mentors others who have been diagnosed with cholangiocarcinoma and other forms of cancer.
TRANSCRIPT
Bruce Morton: Greetings and welcome, this is the Cancer Interviews podcast, and I’m your host, Bruce Morton. There is a campaign in the United States called, “Stand Up To Cancer,” and that is precisely what our guest on this episode has done. She is Karen Humphries of Sydney, Australia, and she has twice survived a rare form of bile duct cancer known as cholangiocarcinoma. Hers is a story that should inspire anyone on a cancer journey, and now is the time to hear it. Karen, welcome to Cancer Interviews.
Karen Humphries: Thank you.
BM: Karen, you have a life outside of a cancer journey. If you would, let us know a little bit about yourself, such as where you are from, what you have done for work, and what you do when time allows for fun.
KH: My name is Karen Humphries, and I am from Sydney, and what I have been previously doing for work, is, in my younger years, I was in administration, then went back to school and studied in health and social care, plus graduate work in social counseling, so I specialized in chronic health; but I had an additional chronic health issue, which has not allowed me to work in a traditional nine-to-five job like the average person. Some of the things I like to do is be with my dog, he is a miniature snauzer and I also love cold water dipping as well.
BM: For all of us who have survived cancer, there was that time when it appeared our health had gone from normal to abnormal, and that eventually led to a cancer diagnosis. For you, when and how did that chain of events begin?
KH: Okay, so for many years before my diagnosis in October 2021, I had numerous issues. I had severe indigestion, severe itching, and at one point, I was hospitalized and they said I had appendigitis, and I had severe vomiting after that for six months. I was only able to digest eggs and gluten free toast for six months and was unable to eat solid foods. I had pain in the right side ovary, I had belly button pain. I just felt not well within myself, especially before I eventually had my gallbladder out. I knew something was very wrong. I needed to do whatever I could do to stay alive for the next five years.
BM: Karen, that is a very long list. With so many things that had to be addressed, even though you knew you needed medical attention, did you know where to go?
KH: I didn’t because I have a rare condition which caused this cancer. So, everyone I saw was attributing my issues to this rare condition, unfortunately. The connective tissue holds all the joints and organs together so that it affects every part of my body. Looking back, I had been going in and out of hospital so many times saying there was something wrong, and they wouldn’t scan me.
BM: We’re confident you’ll be able to learn some tips and tools to help 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 Subscribe button below and click on the bell icon, so you’ll be notified when we release our next cancer interview. Finally, we want to remind you we on Cancer Interviews are not distributors of medical advice. If you seek medical advice, please contact a license health care professional.
Getting back to your story, by this time you have sought medical attention. Sometimes you got the medical attention you needed and sometimes you didn’t, but what was the chain of events that resulted in your cancer diagnosis?
KH: I had been trying to advocate not toget rectal cancer because I had a colostomy in 2010, which caused a rare disease in the rectum later on. I knew something was wrong and I had severe belly button pain one night after a roast chicken dinner. I thought the pain might be dislocated ribs. I was so severe with the pain one day and I went to the hospital a few weeks after going to the hospital for the problems with the rectum. Fortunately for me, this time the lady did scan my gallbladder area. At that time, they didn’t tell me that it could be cancer. I thought it might be irritable bowel syndrome. Well, the decided to take my gallbladder out. They actually saw this mass. It was during COVID, so I had to wait four weeks to return to the doctor, but my GP, her mother died of bile duct cancer, a type called cholangiocarcinoma, followed these scans up for me and determined there was cancer in there and she immediately got me to a larger hospital. They decided to do more scans and I went on to have a two-part liver resection, lymph node removal and had my appendix out. They found cancer in the lymph nodes after that. They thought it was Stage 2B gallbladder cancer. I didn’t realize at that time that I had Stage 4.
BM: Two-part question here. Obviously you are dealing with a number of severe issues all at once. How difficult was the physical part of your journey?
KH: It was very tough. I had a very good medical team and after the gallbladder removal, he said to get up straightaway and start walking, which I did. About ten days later, I had the liver resection, that was like something I have never experienced, and I had had a colostomy. It was very grueling on the mind and body and spirit, but I knew that it wasn’t my time as well and that I was going to get through it.
BM: Karen, to a small degree you have already answered the second part of my two-part question. Anytime one is diagnosed with cancer, it is horrific news; but each person is different, each diagnosis is different. That said, from an emotional perspective, how did you handle news of your diagnosis?
KH: The day I was diagnosed before my liver resection, my GP told me I handled the news with dignity and grace. I had twice before the age of 36 been living with severe illness which nearly caused me death. There were times when I couldn’t look at the diagnosis on a piece of paper after the first diagnosis. After the second time, I handled it much better.
BM: At this stage, your diagnosis was gallbladder cancer, and with that in mind, did you have treatment options?
KH: Yes, I did. I had the surgeries that we just discussed, and I had six months of chemotherapy called xeloda, to which I responded well. I did not know how well I was going to respond, having a rare genetic condition, but I tread well in the water, thankfully, and went into remission.
BM: That was great news, but just a couple years later, things took a turn for the worse with another diagnosis.
KH: Yes, in December 2023, I started having jaundice. I was not feeling very well, and I was starting to have severe nausea again. I had to return to my GP and say something is wrong. They ran more scans, then rang me and said my cancer was back. They went on to do biliary stents, a biopsy on my neck and on liver, and it all confirmed that it was cholangiocarcinoma.
BM: And this was not Stage 2B, it was Stage 4, correct?
KH: Correct, it was Stage 4, then they said to me they think it has always been Stage 4, not Stage 2B, which accompanied the first diagnosis. I had had a long remission because for a lot of people it comes back in a few months time, and the survival rate is very low. It averages about six to twelve months, but I am still here.
BM: I was going to ask. Cholangiocarcinoma is not a high-profile cancer. That said, was it difficult to someone who could treat the disease?
KH: In Australia, I feel that some of the top hospitals have really good doctors, and I was just in a fortunate position where my GP could move me over to one of those hospitals; but if you are in a regional area or in a smaller hospital, it seems quite poor and the prognosis suffers as a result.
BM: With your Stage 4 diagnosis being labeled ‘incurable,’ how do you go through each day, month and year?
KH: It has nearly killed me twice before, so I had to do a lot of work before I was diagnosed with cancer with my counselor and my counseling degree to detach myself from my illness because you will get trapped in that; so, the second time, every day I woke up and just said to myself, “I am cancer free.” I started having a different relationship with myself, my body and spirit as well. I get up and live my life because I have studied about death and not to be scared about death because I think that helps as well. Death will happen to us all, so I choose to live to be grateful for the simple things.
BM: Karen, you had mentioned mind, body and spirit. If we think back to prior to your diagnosis, and considered your health to be at 100 percent, today, how would you quantify the health of your mind, body and spirit?
KH: Oh, I am up there at 100 percent or maybe at 99.9, as I do a little bit more meditation every day. I say that we have this mind, body, spirit bank and I deposit very much every week and every day into those deposits, so, when I was having those surgeries and when I tended to my spiritual health, I went to the bank and reaped those benefits back tenfold, and they keep me going.
BM: Our guest is Karen Humphries of Sydney, Australia, and we are about to wrap up. Karen, recently we had a guest who is also fighting cholangiocarcinoma. She anticipates major advances in research in that fight. What do you think about the advances being made in this fight?
KH: Oh, it is very exciting. DNA studies have already revolutionized lung cancer in research. I think we will find new answers. I think immunotherapy will help as well. Because of all this, I know it is not my time. I am on active treatments, but they have been able to get me to a stable position. I am very excited because ten years ago, I would have been dead.
BM: You won’t find this name on her birth certificate, at least I think you won’t, but in addition to Karen Humphries, you should find the name ‘Unstoppable,” because that’s what she is, and she has shared with us a compelling story and an inspiring story. Karen, we want to thank you for being with us on Cancer Interviews.
KH: Thank you very much, Bruce.
BM: And as we say when we conclude, if you or a loved one are on a cancer journey, you are not alone. There are people out there like Karen Humphries, who have words of wisdom that can aid your cancer journey. So, until next, we’ll see you on down the road.
Additional Resources:
SHOW NOTES
TITLE: Karen Humphries, Two-time Cholangiocarcinoma Survivor – Sydney, Australia
After a long list of health issues, Karen Humphries was diagnosed with a rare type of bile duct cancer called cholangiocarcinoma. She was initially diagnosed in 2021 with Stage 2B gallbladder cancer, had her gallbladder removed, after which the diagnosis was changed to Stage 4 cholangiocarcinoma. Karen underwent a two-part liver resection and a chemotherapy regimen and went into remission. Two years later, she was again diagnosed with cholangiocarcinoma. Her treatment included biliary stents. Karen knows her cancer is incurable but has survived and leads a happy life.
Additional Resources:
Time Stamps:
02:02 Before her cancer diagnosis, Karen experienced numerous health issues.
05:41 A gallbladder scan led to removal of her gallbladder and a diagnosis of gallbladder cancer.
07:34 The physical part of her treatment was very difficult.
08:55 How she emotionally dealt with her diagnosis.
10:03 After Karen’s first diagnosis, she underwent six months of chemotherapy.
10:38 Her second cholangiocarcinoma diagnosis.
13:40 How she lives with a diagnosis that is labeled ‘incurable.’
15:13 Sizes up her health as of today.
18:32 Excited about advances in cholangiocarcinoma research.
KEYWORDS (tags):
bile duct cancer
gallbladder cancer
cholangiocarcinoma
appendagitis
liver resection
colostomy bag
xeloda
chemotherapy
biliary stent
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