Medical Stories - Bile Duct Cancer: Stephanie's Story

"If you look at me, no one thinks that I am a stage four cancer patient." - Stephanie

In this episode of Medical Stories, we meet Stephanie, 52, a powerful figure recognized for her skills and contributions to the international human rights field. Her work has changed lives. Now she is counting on the work of medical scientists to change hers. Stephanie noticed discomfort and other symptoms while on vacation. This led to a devastating diagnosis of a very rare form of gastrointestinal cancer called Cholangiocarcinoma or bile duct cancer, of which there are about 8,000 cases in the United States per year.

Today treatment opportunities are providing hope and encouragement. Stephanie is attacking her illness with everything that science has made available to her, along with positive determination and her deep commitment to how the mind affects the body.

Featuring renowned expert: Lipika Goyal, MD, Director of the Gastrointestinal Oncology Program at Stanford Cancer Institute

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[antigo]

My husband was diagnosed with cholangiocarcinoma on 8/18/23 at 70 years old. He made 9 out of 12 chemo treatments. His body could no longer handle it. He had surgery on 2/8/24 in which they took 1/4 of his liver. Unfortunately, his cancer came back in 6/24. They are concerned how fast and how much it came back with having 6 new liver lesions. He just finished 8 radiation treatments. He will start in the clinic trial next week with immunotherapy and a cancer drug. Praying every day the new treatment will kill the cancer cells. Please pray for my husband. We have alot of life together to live.

[SallyToohey]

I was just diagnosed with stage four cholangiocarcinoma in March of 2023. The only symptom I had was one night of severe pain in the upper right abdomen area. I went to urgent care the next morning and the Dr there ordered a ton of bloodworm and had me scheduled for a sonogram the next day. The imaging place called me back shortly after and said I needed to come back for a CTscan. Then my nightmare began. My tumors are only in my liver so far so I am in chemo and praying it doesn't spread. Your story frame of mind with this horrible cancer is similar to mine. I'm still working full time, enjoying my five kids and three grandkids and prioritizing doing what I want to do. I still walk everyday and my Oncologist is surprised with my tolerance of treatment and my energy level.. Next week I start my 21st chemo cycle. Keep the faith and keep doing what you're doing. To me there's no other choice. ❤

[cathyebreo]

My husband was diagnosed with stage 4 cholangiocarcenoma with his only symptoms being slight weight loss and nausea. His liver enzymes were NEVER abnormal. He fought like hell for 19 months and passed away 5 months ago. So much more research is greatly needed for this cancer. Thank you so much for this documentary. I knew it was rare, but I had no idea of the numbers.

[viccimauldin]

Thank you Stacie and family for founding The Cholangiocarcinoma Foundation. My husband was diagnosed with stage 4 and died 5 months later in 2011. He fought hard but did not really have a chance. God bless those who face this awful cancer for it totally rocks the family. ♥

[verad]

One doesn't know how strong they are until they have to be STRONG. My 79 yr old mom was diagnosed Sept.2023. I am praying she will be able to pull through this.

[GoodnightJLH]

I have cholangiocarcinoma. I had no symptoms and I was stage 1. The cancer was discovered on an MRI that was done for a completely different reason.

Thank you for spreading awareness.

[SunnySingh-mpkw]

My father diagnosed on 25th feb 2024 by stage lV colangio carcinoma, he is on chemo + immune therapy but he is suffering very much. Pls god dont give this type of cancer to any body its very painful for both patient and the family also

[MrPlod]

Hi Stephanie, reading through your vlog I could not just slide on by. I’m a 69 year old Scotsman, now living in Surrey England. I was diagnosed with stage 4 colon cancer in 2004. I had 8 years of ops and chemo, with scan after scan. I hear and read a lot of people mention things like ‘fight’ the cancer. My thinking told me to fight hard and try to do all I was told by my Professor and other specialist doctors. There are too many people who try to fight, then realising what you’re doing isn’t helping…. Possibly harming things. I do wish you a full recovery and, if power of thought is anything, you should know I’m thinking you can get through this awful mess called cancer. Peace and regards from Colin.

[debp]

Stephanie I lost my husband to cholangiocarcenoma on September 4. Thank you for doing this documentary. It’s important for this information to get out there. Gob bless you.

[michellebaxter]

My mom had this cancer, started as jaundice and within 3.5 months she passed away nearly 12 years ago. Her last wish was to donate her body to science for testing this rare type of cancer. I just hope one day they can gather more information and help people in the future.

[allisonoliver]

My 60 yrs old dad had this, they offered him nothing and gave him 23 weeks he lived 22 then passed away peacefully in hospital, I can’t believe this is still not getting enough research carried out that’s why it’s so rare we need more funding to save people’s life. I pray you fight this and your journey isn’t like my dads, when he passed it was the worst day of my life.

[gincyachu]

My husband who is 45 has just got this diagnosis 2 weeks ago. Unfortunately we didn’t have any warnings, no symptoms no signs, 4 th stage spreaded to liver . Hoping some miracle will happen.

[Moving]

My dad passed away in 2004 and there was no information we could find. He did not receive chemo or radiation treatment and instead went straight into surgery. We had him for 6 months from the time of diagnosis. After he was out of ICU and in a room with 3 others who had the same cancer. No knowledge then of the biomarkers. All 4 passed away that year. One was a Dr. I had worked with and greatly admired.
I am so grateful for this foundation and its research should anyone else have to live through this horrible disease.

[erinward]

My mom at 70 yrs old found out she had cancer on 3/2/2024. After doing additional tests she found out on 4/3/2024 that she had Stage IV cholangiocarcinoma. She was told on 4/3/2024 that she had a year to live and the pursue getting chemotherapy. She never made it. The day that chemo was supposed to start her body started to fall apart (because cancer had consumed so many other organs). She died 56 days after finding out that she had cancer and a mere 24 days after hearing she had 1 year to live. This cancer is terrible. I feel for everyone else that has or will go through this with a loved one. Cancer is awful.

[warpedweft]

I know 2 people who have had this. One passed away after a 2 year battle. The other is now in his 90s, more than 40 years since he was diagnosed. It wasn't easy, and there was a point where we all thought he may not recover, but he's still with us. His first symptom was jaundice and fortunately the cancer was found very swiftly and removed.

[southernbychoice]

my mom was 89 at her diagnosis Dr gave her 6 months she lived 6 weeks this was during covid and i can't explain the heart ache... she stayed home and my sisters and my aunt cared for her through the end ...with the hospice meds she did not suffer such an aggressive CA i miss her so very much😢😢😢

[orlandofernandes]

My husband of 53 yrs was discovered with this cancer in 4 stage n l lost him within 8 months. It was too soon only symptoms was slight weight loss n jaundice wh he got n got detected with stage 4 bile duct cancer. May God help a cure to be found at earliest

[hovhanneshovhannisyan]

My father was diagnosed with this cancer 2 months ago. I wish sooner there will be a cure for this. I don’t want anyone to go through what are we going through right now.

[emilygulamknotts]

Yesterday my doctor called me to inform my biopsy result.the result I had a bile duck cancer.now I’m so sad and stressed 😥

[wpwdzue]

My mom was 70. She was diagnosed stage 4...no treatment offered. Passed away 6 weeks later. Symptoms were nausea...weight loss...shoulder pain and began to get jaundiced