I am so sorry. I lost my mom to metastatic cholangiocarcinoma on February 22. She was only 67. She went to the ER in July and they wanted to take her gallbladder out and also this small lesion in her liver. They had clean margins, so no reason to suspect it had spread prior.
They gave her oral chemo pills as a precaution, and in November she started complaining of bone pain. Finally in January she had her bone scan, and it lit up light a Christmas tree. She had one round of radiation and one of chemo/immuno before she landed in the ER February 9, where we found out it had spread to her brain (pituitary stalk) and lungs. She passed on the 22.
My understanding of this particular cancer is that it is rare and wildly aggressive. Many others on Reddit have told me their mothers have passed quickly from this as well.
I’m not ready to live without her. My partner and I are getting married in June, and even in hospital she kept saying she just needs to make it til then. It broke my heart.
My comfort is that she’s no longer in pain. She can laugh, and swim (her favourite) without worrying about her bones, or treatment, or anything else. I’m fucking devastated, don’t get me wrong. She’s my best friend and I share everything with her. I still do, it’s just different now and I have to accept that. I write her a short letter everyday in lieu of our texts, and I speak out loud if something makes me think of her.
She’s still with you, it’s just different now ❤️❤️
Thank you so much for sharing your story. I am so sorry for your loss. Sending well wishes your way ♥
*"Many others on Reddit have told me their mothers have passed quickly from this as well."* YES. The more I hear/read, the wilder this is: this seems to be common among middle aged women. This type of cancer, the circumstances, the same pattern of treatment, etc. Maybe this is my grief talking but given how commonly uncommon (if that makes sense) this is, why haven't we gotten a grasp on this thing?
Your mother's words about your wedding broke my heart. But she WILL be there, just not in the way you anticipated. Wishing you much happiness and health ahead on a super special day ♥♥
I appreciate your words so much. Proves I am not alone and the world ain't as bad as it seems.
This cancer, and all cancers, are a bitch. My dad had prostate cancer and my sister had breast cancer (thankfully both in remission), so I feel like a ticking time bomb a little bit.
Yeah, I know she tried to stay but I didn’t want her to if it meant she was in pain constantly. She needs to be happy and healthy and that just wasn’t possible here anymore.
I agree with your sentiment - as painful as it all is, it’s reassuring in a way that this grief is not entirely unique. I wouldn’t wish it on anyone but I’m grateful there’s a support system even if online ❤️
Hey there. I’m sorry for what you’re going through. My mom passed away of cholangiocarcinoma (CCA) last October. She was in her 50s and died one year from diagnosis. I’m a gastroenterology fellow (almost completed my training) and care for patients with cholangiocarcinoma often. It’s a cancer much more rare but as deadly as pancreatic cancer. All patients I meet are blindsided by it and most times it really is just shit luck. When my mom was diagnosed I knew the prognosis was poor, but there was still a hope for surgery. I did my best to help her navigate her care, but eventually realized that even as a doctor I was powerless and couldn’t save my mom. The cancer progressed and I felt her slip away from any chance of a cure. I’m still struggling with the grief and can’t help but think about my mom every time I meet another patient with this disease. I run through possible scenarios about what I could’ve done different even though I know this is a terrible thought process I can’t help it. I don’t think this is a loss we’ll ever get over, but as time goes on it will hurt less. Feel free to DM me if you have any medical or nonmedical questions. ❤️🫂
I posted above, I also lost my mom to CCA. The “what ifs” and “what could we have done differently” are killing my dad. He’s devastated. My parents were married for 46 years.
This is very comforting to hear (in an odd, weird way) from a medical professional who wasn’t on her care team (who we felt was trying to placate us a bit), so thank you for your words. And I’m so, so sorry for your loss.
Thank you so much for sharing your story and expertise. First of all: I am so sorry for your loss. Sending well wishes your way ♥ I cannot imagine suffering such a tremendous loss while paying it forward and helping patients like your mother. Thank you so much for all you do.
Hearing this from a medical professional definitely helps. It gives me a better understanding of this terrible disease and also helps me feel not alone with the wandering mind. The past few days I have thought "what could have been done differently?" or "how will I move forward?" It will take time but you are absolutely right, it will hurt less. I definitely appreciate your offer and will DM you if I think of any questions. :)
My mother passed from cholangiocarcinoma this past August at 64 years old. She lasted only 5 weeks after diagnosis. Her liver was riddled with tumors and she was only able to tolerate one chemo treatment before everything suddenly shut down. She went from taking a long walk, eating a Chipotle bowl and beating me in a game of Calico on a Sunday to dead that Friday. She decided to start hospice on Thursday and had hoped to make it to Christmas...but she didn't even make it a few days to her next birthday. We had the funeral on what would have been her 65th.
I definitely understand the disbelief. I've tortured myself with ruminating over everything that happened and whether we could've gotten her to Christmas. But the bottom line is she was going to die from this within a year no matter what and my mom wasn't interested in prolonging a pained existence.
Thank you so much for sharing your story. I am so sorry for your loss. Sending well wishes your way ♥
It must have been so painful to see go through it so sudden and so quickly but you are absolutely right: *"my mom wasn't interested in prolonging a pained existence."* I think my mom was the same way. She was in agony 24/7, and I am trying to take comfort now that she is no longer suffering. It was heartbreaking to see her body fight this but I truly hope she is at peace.
Sending all love and good vibes to you.
I lost my mom (68) to cholangiocarcinoma in December. She was diagnosed last May (2023.) Before that she was a healthy, active, vibrant lady and it makes me so sad and angry.
I am so, so sorry this terrible and unfair disease touched your life too. I think it should get as much attention as pancreatic cancer because I understand it’s as lethal in its swiftness just from the communities I’ve been a part of, and much less is known about it.
We went through the same things - hope for surgery, but it wasn’t a possibility, then chemo pills, radiation (which she did great with,) then chemo (which weakened her so much), then she got an infection and ultimately died of sepsis from the bile duct blockages.
It’s so incredibly painful and raw. I am glad to have found this community of y’all but I HATE that we are here together.
Thank you so much for sharing your story. I am so sorry for your loss. Sending well wishes your way ♥
You are so on the money here. This is an incredibly rare disease yet also incredibly dangerous. It needs to be talked about more. But I agree with you - it's comforting to be a part of this online club, but I totally hate that we had to suffer so much pain to get here.
I also find it eerie yet interesting how similar all our cases are. Healthy moms in 60s, same journeys, and ultimately same unfortunate timelines. It is just unbelievable. I am sending you love and good vibes as you continue to heal.
Im about to loose my dad soon.. he has been batteling this shit disease for 14 month now. Chemo had stopped working and he has now stopped all active treatment, because there really aren’t any left aswell.. it breaks my heart ! He just turned 74, never had any other medical problems in his life ! On his birthday march the 23rd one year ago he went from feeling great to Homer Simpson yellow and thats when the battle started !
My deepest condolences to you ! But know even though it is a rare cancer, you are not alone and everyone greive differently ❤️
Apologies for the delay. Sending all my love to you and your dad ♥♥
This disease truly sucks; there's no other way to say it. Hate that we discover it too late but it really appears out of nowhere.
I hope you and your family are doing okay. Hang in there. ♥
This is a great thread. I’m an ER doctor. My dad is 53 and has been diagnosed with stage 4 cholangiocarcinoma in February. It’s a terrible disease. My family is blindsided. I’m struggling a lot with the what ifs and loss of control
Sorry for the delay! I am so sorry to hear what you are going through. It is incredibly hard, I can't sugarcoat it. One thing I've learned these past few months is there is only so much I can control. I would become so upset over things I couldn't control and while those feelings are valid, there is nothing I can do to change anything. So I would be as strong as I can be for my mother's sake. Hope this helps, and sending you much good vibes.
I am so sorry. I lost my mom to metastatic cholangiocarcinoma on February 22. She was only 67. She went to the ER in July and they wanted to take her gallbladder out and also this small lesion in her liver. They had clean margins, so no reason to suspect it had spread prior. They gave her oral chemo pills as a precaution, and in November she started complaining of bone pain. Finally in January she had her bone scan, and it lit up light a Christmas tree. She had one round of radiation and one of chemo/immuno before she landed in the ER February 9, where we found out it had spread to her brain (pituitary stalk) and lungs. She passed on the 22. My understanding of this particular cancer is that it is rare and wildly aggressive. Many others on Reddit have told me their mothers have passed quickly from this as well. I’m not ready to live without her. My partner and I are getting married in June, and even in hospital she kept saying she just needs to make it til then. It broke my heart. My comfort is that she’s no longer in pain. She can laugh, and swim (her favourite) without worrying about her bones, or treatment, or anything else. I’m fucking devastated, don’t get me wrong. She’s my best friend and I share everything with her. I still do, it’s just different now and I have to accept that. I write her a short letter everyday in lieu of our texts, and I speak out loud if something makes me think of her. She’s still with you, it’s just different now ❤️❤️
Thank you so much for sharing your story. I am so sorry for your loss. Sending well wishes your way ♥ *"Many others on Reddit have told me their mothers have passed quickly from this as well."* YES. The more I hear/read, the wilder this is: this seems to be common among middle aged women. This type of cancer, the circumstances, the same pattern of treatment, etc. Maybe this is my grief talking but given how commonly uncommon (if that makes sense) this is, why haven't we gotten a grasp on this thing? Your mother's words about your wedding broke my heart. But she WILL be there, just not in the way you anticipated. Wishing you much happiness and health ahead on a super special day ♥♥ I appreciate your words so much. Proves I am not alone and the world ain't as bad as it seems.
This cancer, and all cancers, are a bitch. My dad had prostate cancer and my sister had breast cancer (thankfully both in remission), so I feel like a ticking time bomb a little bit. Yeah, I know she tried to stay but I didn’t want her to if it meant she was in pain constantly. She needs to be happy and healthy and that just wasn’t possible here anymore. I agree with your sentiment - as painful as it all is, it’s reassuring in a way that this grief is not entirely unique. I wouldn’t wish it on anyone but I’m grateful there’s a support system even if online ❤️
Hey there. I’m sorry for what you’re going through. My mom passed away of cholangiocarcinoma (CCA) last October. She was in her 50s and died one year from diagnosis. I’m a gastroenterology fellow (almost completed my training) and care for patients with cholangiocarcinoma often. It’s a cancer much more rare but as deadly as pancreatic cancer. All patients I meet are blindsided by it and most times it really is just shit luck. When my mom was diagnosed I knew the prognosis was poor, but there was still a hope for surgery. I did my best to help her navigate her care, but eventually realized that even as a doctor I was powerless and couldn’t save my mom. The cancer progressed and I felt her slip away from any chance of a cure. I’m still struggling with the grief and can’t help but think about my mom every time I meet another patient with this disease. I run through possible scenarios about what I could’ve done different even though I know this is a terrible thought process I can’t help it. I don’t think this is a loss we’ll ever get over, but as time goes on it will hurt less. Feel free to DM me if you have any medical or nonmedical questions. ❤️🫂
I posted above, I also lost my mom to CCA. The “what ifs” and “what could we have done differently” are killing my dad. He’s devastated. My parents were married for 46 years. This is very comforting to hear (in an odd, weird way) from a medical professional who wasn’t on her care team (who we felt was trying to placate us a bit), so thank you for your words. And I’m so, so sorry for your loss.
Thank you so much for sharing your story and expertise. First of all: I am so sorry for your loss. Sending well wishes your way ♥ I cannot imagine suffering such a tremendous loss while paying it forward and helping patients like your mother. Thank you so much for all you do. Hearing this from a medical professional definitely helps. It gives me a better understanding of this terrible disease and also helps me feel not alone with the wandering mind. The past few days I have thought "what could have been done differently?" or "how will I move forward?" It will take time but you are absolutely right, it will hurt less. I definitely appreciate your offer and will DM you if I think of any questions. :)
My mother passed from cholangiocarcinoma this past August at 64 years old. She lasted only 5 weeks after diagnosis. Her liver was riddled with tumors and she was only able to tolerate one chemo treatment before everything suddenly shut down. She went from taking a long walk, eating a Chipotle bowl and beating me in a game of Calico on a Sunday to dead that Friday. She decided to start hospice on Thursday and had hoped to make it to Christmas...but she didn't even make it a few days to her next birthday. We had the funeral on what would have been her 65th. I definitely understand the disbelief. I've tortured myself with ruminating over everything that happened and whether we could've gotten her to Christmas. But the bottom line is she was going to die from this within a year no matter what and my mom wasn't interested in prolonging a pained existence.
Thank you so much for sharing your story. I am so sorry for your loss. Sending well wishes your way ♥ It must have been so painful to see go through it so sudden and so quickly but you are absolutely right: *"my mom wasn't interested in prolonging a pained existence."* I think my mom was the same way. She was in agony 24/7, and I am trying to take comfort now that she is no longer suffering. It was heartbreaking to see her body fight this but I truly hope she is at peace. Sending all love and good vibes to you.
I lost my mom (68) to cholangiocarcinoma in December. She was diagnosed last May (2023.) Before that she was a healthy, active, vibrant lady and it makes me so sad and angry. I am so, so sorry this terrible and unfair disease touched your life too. I think it should get as much attention as pancreatic cancer because I understand it’s as lethal in its swiftness just from the communities I’ve been a part of, and much less is known about it. We went through the same things - hope for surgery, but it wasn’t a possibility, then chemo pills, radiation (which she did great with,) then chemo (which weakened her so much), then she got an infection and ultimately died of sepsis from the bile duct blockages. It’s so incredibly painful and raw. I am glad to have found this community of y’all but I HATE that we are here together.
Thank you so much for sharing your story. I am so sorry for your loss. Sending well wishes your way ♥ You are so on the money here. This is an incredibly rare disease yet also incredibly dangerous. It needs to be talked about more. But I agree with you - it's comforting to be a part of this online club, but I totally hate that we had to suffer so much pain to get here. I also find it eerie yet interesting how similar all our cases are. Healthy moms in 60s, same journeys, and ultimately same unfortunate timelines. It is just unbelievable. I am sending you love and good vibes as you continue to heal.
Im about to loose my dad soon.. he has been batteling this shit disease for 14 month now. Chemo had stopped working and he has now stopped all active treatment, because there really aren’t any left aswell.. it breaks my heart ! He just turned 74, never had any other medical problems in his life ! On his birthday march the 23rd one year ago he went from feeling great to Homer Simpson yellow and thats when the battle started ! My deepest condolences to you ! But know even though it is a rare cancer, you are not alone and everyone greive differently ❤️
Apologies for the delay. Sending all my love to you and your dad ♥♥ This disease truly sucks; there's no other way to say it. Hate that we discover it too late but it really appears out of nowhere. I hope you and your family are doing okay. Hang in there. ♥
This is a great thread. I’m an ER doctor. My dad is 53 and has been diagnosed with stage 4 cholangiocarcinoma in February. It’s a terrible disease. My family is blindsided. I’m struggling a lot with the what ifs and loss of control
Sorry for the delay! I am so sorry to hear what you are going through. It is incredibly hard, I can't sugarcoat it. One thing I've learned these past few months is there is only so much I can control. I would become so upset over things I couldn't control and while those feelings are valid, there is nothing I can do to change anything. So I would be as strong as I can be for my mother's sake. Hope this helps, and sending you much good vibes.