Medical Stories - Bile Duct Cancer: Stephanie's Story
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- čas přidán 21. 09. 2023
- "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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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. ❤
Thank you for sharing, please continue
Keeping you and your family in my thoughts and prayers...I wish you all nothing but the best
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.
So sorry for the loss of your husband I've lost my sister to cancer and my husband had his bladder removed due to cancer he is now scanned twice a year Cancer is so devastating to Watch your loved one suffer is heartbreaking 😢 sending you ❤ and 🙏 from Scotland
@assi2424 cancer certainly does not discriminate or care who it takes. I'm so sorry about your sister and thankful your husband has made it through. Prayers for his continued journey and blessings to you.
I'm so sorry for your loss 😢❤
@debyoder8342 thank you 💔
So sorry. I can’t imagine how you feel. I hope you have a good support system?
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.
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. ♥
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.
It is terrible...
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.
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.
Give her noni juice
@@pampatriciae3937Idiotic.
Im sorry to hear this. My mum just got diagnosed and when the doctors say theres nothing that can be done , it killed me. Giving her only months. The feeling is horrible.
Besides prayers. Can anyone please help with what to help her with ?
🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
@@AD-bq8nwu
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.
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.
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.
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.
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😢😢😢
So sorry to hear this. God bless you and family 🤍 it truly is a horrible feeling.
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.
What stage did your father have
They didn’t stage him, he was admitted to hospital when he turned yellow, they put stents in but the cancer grew so fast they blocked the stents, then they sent him home under the impression they would try a liver transplant but the cancer had already crossed the portal vein, so that was a no, he passed 7 weeks later. Our hearts broke and are still broken x
@@allisonoliver8223 Same happened to our grandmother, but she had stage 4 and passed away after 6 months - The biliary is even worst than pancreatic cancer and fast growing - 6 months seems the average period of life after diagnoses for the people that choose chemotherapy and the new bio medicines, sometimes is more sometimes less, but unfortunately not more than 2 years, really sad - But there are good news, because the new cancer vaccines based on the rmna technology, will be available soon, some before 2025 or max 2030
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
So sorry. Update ?
Sounds so like my brother. Diagnosed late Oct 2023, died 5/4/24. Chemo almost killed him. He would have turned 70 on 6/8/24. I miss him terribly. This is a horrible cancer.
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.
Hi, thank you for sharing. May I ask, was it MRI of liver, also was it with iv contrast?
@@corvus400
It was abdominal MRI with gadolinium. The targeted organ was the spleen.
I’m extra lucky because when they went to do u/s guided core needle biopsy, the 3.6 cm tumor wasn’t visible at all. They were able to see it when they gave that IV contrast that is basically bubbles.
I had a clean resection at University of Michigan last May.
God bless you....🙏
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.
Removed with surgery?
@@ElinoMilanesi yes. A whipple procedure. No chemotherapy.
@@ElinoMilanesi He has a few digestive issues as a result but that only started when he turned 90. He is now 96.
@@warpedweft9004 Wow nice that he keeps going. Thank you. Is Chemo a bad idea ?
@@ElinoMilanesi I have no idea. I'm not an oncologist. All I can tell you is what his experience was and this happened 40 years ago. There's been many advances in treatments since then.
It was 8 years yesterday 10-15 that my husband lost his battle with this horrible cancer. He was diagnosed 10-28-2014. He had 2 drains put in the bring down the bilirubin. He tried chemo, first treatment, he got real sick with sepsis. Almost didn’t make it through the night. He got better with antibodies via IV at home. Tried chemo again when he was better, again became sepsis, ended up in ICU. At that point he said no more chemo, he felt it wasn’t worth getting so sick. He lived 8 months. He died 2 weeks short of a year from his initial diagnosis.
This is almost the exact same description of my brother's case. He was diagnosed Oct 2023. He had exactly the same about sepsis and chemo and IV anti biotic. It now is April of 2024 and he said I don't want anymore of this. I believe he will not be with us long. I'm so very sad to hear that not only is this rare cancer not so rare anymore, the catch up rate for successful treatments is not good. This Foundation is a blessing. Your brother's life through your work is helping so very many people. I pray that more also will happen with preventative measures and early detection. This disease is just heart breaking. If any bit of light can bring Hope, may that happen with the new options and people willing to stay positive in their journey. We all can help bring joy to each other. The cancer survivors I know talk about how they believe being positive in outlook is that extra tool for healing and living longer. If anyone reading this needs a boost, I am happy to reply and help cheer you on as you encounter this challenge. Like in the video Stephanie says, there is a VERY strong connection between mind and body. I believe that wholeheartedly. 🙏♥️🌈
She’s beautiful inside and out ❤
Thank you for this video . Im sorry to hear all of these stories. My mum just got diagnosed and when the doctors say theres nothing that can be done , it killed me. Giving her only months. The feeling is horrible.
Im praying and hoping to find a way to help my mum. 🙏
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
So sorry . God bless you 🤍
My deep condolences...❤😥🙏
My sister died from Cholangiocarcenoma in 2013, She had it for less than 10 months at the time of her death. There is a high risk I will get it to. I go 4 times per year for MRI
It's sad reading comments about lossing their love ones because of this cancer. 😞
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
Exact same for my brother. Diagnosed Late October 2023, died 5/4/24. Horrible disease.
God bless you stephenie❤ and thanke you stacie for the colangiocarcinoma foundation i spent hours reading about it when my mum diagnosed with it in the beginning of 2021, some doctors told us she only had 2 months...!!, but yet she's still with us until today...and we will keep fighting.... and please always seek for second opinion
My brother, not heavy, non-smoker/drinker, died about 4 weeks post-diagnosis. Prayers for research breakthroughs.
Same with my brother. Diagnosed late Oct 2023, died 5/4/24. So so sad. Terrible disease.
Lost my dad to bile duct cancer in 2016,he was 87 years young and I miss him so😢..he died within two weeks of his diagnosis.
So sorry for your loss. I also lost my dad in 2016 when he was 87.
Thank you and to you the same
My Mum had this cancer. She only lived 6 months after diagnosis. She had surgery which saved her life at the time. She went yellow and the itching drove Mum nuts. We had to cut her nails really short to save her making wounds. Her bilirubin was off the charts. They tried chemo but it didn’t work for her. It’s 20 years in November since she passed away. My sisters, myself and my daughter have all had issues with our gall bladder. My daughter and I have both had it removed. Mum had gall bladder problems before her diagnosis. RIP Mum. Love you and miss you always ❤❤❤The best of luck to you. ❤
God bless you and family . Its horrible, my mum just got diagnosed and the docs said theres nothing they can do .
@@AD-bq8nw I feel for you. The very best for you and your family. ❤️❤️❤️❤️
@@vickimarlene4905 thank you so nuch 🙏
You are a beautiful warrior stephanie.
Great piece. Helps me understand cancer and cancer treatments better. My mom has bladder cancer, stage one thankfully.
You are a shining example of what a human being should be.
My husband died 3 weeks after diagnosis. It’s the worst disease you could imagine.
I'm so sorry...so devastating, this heartbreak. ❤
My condolences - My mom made it 3.5 weeks after her diagnosis. I completely identify. I hope you have found peace and comfort. I have not to date.
Stephanie~you are amazing. I hope you are well. ❤❤❤
I can’t even know what your going through- thank you, thank you & thank you for taking the time to post this video (yes, your son is amazing coping with all of this), I am going through the dr roundabout to try & diagnose what’s wrong with me & this video gives me great help and insight
Just one question, if I may; what type of scan did you have & was it with or without contrast ?
How did your loved ones pass away? Was it sepsis, hemorrhage or something else?
My father was 85 when diagnosed. In August they figured out it was extra hepatic bile duct cancer (Cholangiocarcinoma). To differentiate it was extra hepatic (outside of liver).
It was caught early and he was eligible for surgery because the mass was well-defined and had not spread beyond the bile duct. It was removed and he was up walking, eating and making progress. He then contracted Clostridium difficile which caused severe problems not related to the cancer.. He died a month after his operation due to the infection, not because of the cancer.
THANK YOU
My sister in law died of this type of cancer. They gave her 6 to 7 months to live with chemotherapy and 2 to 3 months without it. She chose without chemotherapy...she died in 3 weeks.
That is so sad 🥺 sorry to hear this. God bless you and family 🤍
😥♥️
I just dealt with a similar situation with my 70 yr old mom. She found out on 4/3/2024 that she had Stage 4. Went through all the tests and prep for chemo and she died 3.5 weeks after her diagnosis - never able to get chemo. I hope you have found some sort of peace. This is the worst thing i have ever dealt with.
What liver enzymes were elevated? What were your numbers? Thank You
My father died of this type of cancer in 1976.
Just diagnosed.
😢🫶🏽🫶🏽🫶🏽 in my thoughts 🫶🏽
I hope you pull through 🫶🏾
❤
How are you?
Is Dave able to tells what chemotherapy drugs and the duration of that part of his treatment? Thank you.
My Stepmom died if this cancer as well 😢
My brother, 61, was diagnosed a year ago, stage 3. Tumor was 14cm. He is responding well. Tumor is 5cm.
I’m hopeful, he’s doom and gloom.
No pain, only chemo brain and tired.
Any good news??
My uncle died of it. Dead within months of his diagnosis 😢
I'm so sorry!! God bless!
We need genetic testing that identifies risk of disease so we can monitor risk and intervene early xx
Totally agree imagine the amount of lives that could be saved!!!
I have cholangiocarcinoma. I had genetic testing in the hopes that it might help my family but the test was completely negative.
😢
❤
Did she take the vaccine ?
Curious as to why Paula Voelker died in 2016?
Parasites lead to chronic inflammation of the bile ducts.
Interesting
Almost all cancers are found at a late stage. This early diagnosis is wishful thinking.
The carnivore diet Dr.Ken Berry on CZcams on cancer.
Please stop insulting our intelligence by offering these quack solutions.
@Ceerads But I'm not insulting I'm trying to show people and spread the message about how carnivore is helping to improve a lot of diseases or even reverse the symptoms.
I am vegetarian. Sorry. Not Sorry.
@@carnivorelife152 When you’ve gone through all the education and hospital work in oncology and joined a team of cancer researchers at a reputable hospital, you can offer your “cures.” But even then, this diet will be considered bull.
@ceerads what is the carnivore diet? My brother was recently diagnosed with this...
One of my best friends was diagnosed with this cancer. He was lucky in that he lived 8 years beyond his diagnosis given he responded well to various treatments and clinical trials. Ultimately, he ran out of treatments and was gone within 2 months. I’m thankful more was known about this cancer when he was diagnosed as it gave him more treatment options and prolonged his time with family and friends. Rest in peace, David. You are missed. 🤍
what stage did her have
Thank you for sharing
Are you still with us, hopefully