Second primary bile duct cancer

Hi Jools63 

I'm really sorry to read that you've recently been diagnosed with bile duct cancer and I can empathise with you in as much as I've had two primary cancers.

How did your appointment with oncology go? Hopefully they were able to help you understand what's happening.

I don't know anything about bile duct cancer but clicking on this link will take you to Macmillan's information on bile duct cancer and it's treatment.

Wishing you all the best with your treatment.

Anne

Thanks latchbrook.I appreciate that you understand how it feels to be diagnosed with a second primary. Unfortunately, I now have to wait for a scan to determine where there may still be disease. It’s become complicated due to the short amount of chemo I had, and the recent liver resection. The liver consultant said it was unlikely they would’ve done the latest surgery had they known it wasn’t colorectal.

Hi Jools63  so sorry to read your posts. Have you any update? They believe my primary is in the bile duct but can't see it can only assume due to the placing of the cancer in liver. I never had any symptoms whatsoever. I'm on chemo gemcitabine & cisplatin along with immunotherapy durvalumab. If your cancer is confirmed in bile duct ask them regarding that treatment & if they can check biopsies to look for a gene. Hope you not waiting too long for results & a plan. Xx

Thank you so much for your reply. I didn’t think I was unusual in not having any side effects. I was sent for a scan a week after my appointment with oncology. I was told results might not be available until after Christmas, but got a call from the upper GI nurse Kate yesterday afternoon. I have an appointment in oncology this Friday. All I asked was is it bad news. She said something along the lines of, it’s not the news we were hoping to give you. I’m trying not to jump to worse case scenarios. I’m doing the things I had planned to try and get to Friday with my sanity. Thanks for the treatment tips. How are you doing with that combination? Do you find it very restrictive? My main worry is that any treatment they offer will affect my quality of life.

The treatment I'm on isn't restrictive, main side effects are tiredness & hot flushes. I did get suspected Colitis from Immunotherapy came off it for 1 month & back on it again so far no issues. I know waiting until Friday is awful thinking of you. Xx

Thanks for your reply. I’m glad you seem to be coping with the treatment. I suffer with post menopausal hot flushes and fatigue already, so am trying to keep an open mind about treatment. They’re doing molecular analysis to determine what exactly they’re dealing with. 

A massive thank you for telling me about the treatment you’re receiving! I went to my appointment yesterday, and it was confirmed that I had bile duct cancer. The good news is that it’s gone, both from the bile duct and liver. The bad news is it’s now in one of my lungs. When I asked about treatment the lovely doctor started to say about gemcitabine, and I chimed in with gemsis, and he and the nurse laughed, and said I was almost better informed than them. I have until after Christmas to make my mind up whether to go ahead, or not. I’ve done more research to see about whether or not I can just have the chemo. The benefit of having the immunotherapy as well, doesn’t seem worth it. Were you offered a choice? Thanks again. I feel like im back in charge.

Hi, I'm glad you feel back in charge again. Great it gone from bile duct & liver that's really good. I'm feeling positive for you, that it can go from the lung. 

I wasn't given a choice, was told the mixture of both chemo & immunotherapy is very good. My first scan showed no visible cancer in my liver was told it still be there just tiny that we can't see it. Professor believes it was the Immunotherapy that shrunk it down a lot more than the chemo would have. Everyone reacts differently as you know, you may not have any adverse effects from Immunotherapy. They can always take you off it if you do. My Dad 85 had Melanoma was on immunotherapy no side effects & it shrink the lump down so small they then were able to do operation to remove it. One thing to remember if you've never been on immunotherapy before the cancer may respond to it really well because it not used to Immunotherapy but could be used to the chemo although it may be different type to what you on before. 

I'm hope you can try & enjoy your Christmas. Xx

Thank you so much for being so kind and sharing your experience with me. It honestly means the world to me. I’m going to enjoy Christmas and think about things again afterwards. I hope you’re able to enjoy yourself, and continue to manage the side effects of your treatment. X