Hi, this is a bit of a long one but I’d love some advice.
My dad (61) was diagnosed with bile duct cancer around 6/7 months ago. He had severe jaundice at the time and needed a stent, the first didn’t work and he was nicked during the second op which caused a bleed which meant what was meant to be a 3-4 day hospital stay ended up being 6 weeks.
We were then told he could have the cancer removed via surgery with a liver resection. However, the jaundice had meant his left liver had shrunk and the tumor is leaning to the right of the duct. So the surgeon recommended we try to grow the left liver so he could remove the right side, they tried to cut off blood to the right side to grow the left, but when they did that op the surgeon failed and poked around so much he caused a bleed in dad’s liver. We were then told the surgeon would go ahead and take the right side so dad didn’t have to go through anymore procedures.
Throughout this all my mum and I have been worried about timing, leaving it too long and giving the cancer time to grow, we were told at every appointment that it was ‘slow growing’ and ‘not to worry, they need to sort these other things out first’.
He was booked to have surgery this Thursday and our worst nightmare has come true, they’ve left it too long and now it has spread to his liver.
I am so angry and sad and disappointed, we were so lucky to catch it early enough to treat and through mistakes, certain choices, and being left for weeks on end, his outcome has gone from a possible cure to basically what feels like a death sentence.
Has anyone experienced something similar? Is there any chance we could treat this spread with chemo and an operation could be back on the table?
They also mentioned they’re not even sure the liver les ions are cancer… I tried to press to find out how we can be sure, but they were evasive as ever. Should I try and push for a second opinion?
Any help would be much appreciated!
Hello IzBiz
I am really sorry to hear about your Dad's cancer.
I can understand why you are feeling angry, sad and disappointed with the issues around the surgeries and the delays with treatments and decisions.
My own cancer was endometrial and I am one of the Community Champions in that group but I also offer support across other groups when needed. I hope you do not mind me responding. A few years ago I had similar with my own Mum and she was of a similar age to your Dad. Her cancer also spread to her liver. She also was offered the stent surgery.
In the end my Mum was offered and had chemotherapy.
I can not remember my Mum having any specific testing done on her liver, other than the original scans.
This link takes you to some info that includes some treatment that may be offered.
Bile duct cancer | Macmillan Cancer Support
Treatment for bile duct cancer | Cancer Research UK
This link has some info about getting a second opinion.
Getting a second opinion | Macmillan Cancer Support
I wonder if it would be a good idea to give the Support Line a call and talk things through with one of the nurses. They would be able to give advice on what further treatments may be offered. They would also be able to talk you through how to get a second opinion. I know that sometimes it can help just to chat to someone that understands.
With some of the rarer cancers it can take a bit longer for a response but hopefully someone with a similar experience will come along soon and offer support.
In the meantime do consider giving the Support Line a call.
Jane
