68 year old mom diagnosed with Bial Duct Cancer

Hi Hells 68 and welcome to the online community

I didn't have the same type of cancer as your mum but I noticed that you hadn't had any replies yet from the other members of this group. Everyone will recognise the feelings of devastation that you have, whether they are the person with cancer or the family member, but most people find that once they have a treatment plan in place they feel more in control.

I hope you don't mind me suggesting that you also join and post in the family and friends group which is a great place to share your feelings and get support when someone you know is living with cancer.

If this is something that you'd like to do just click on the link I've created and then join and post in the same way as you did here.

It would be great if you could pop something about your mum's diagnosis and treatment so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi Hells 68, I’m really sorry to hear about your Mother’s diagnosis. I know exactly how you feel. My Dad was getting tests for a bacterial infection in his tummy because he was sick for a few weeks when he started to turn jaundice. Diagnosed with Bile Duct Cancer 4th June 2019. Never smoked and very rarely had a drink. He was a windsurfer and swimmer. It’s all very unfair and completely shocked us all. Sadly we lost him in March ,a week after his 72nd Birthday.
You’re probably feeling completely overwhelmed right now. The first few weeks you will be in a bit of a fog. How is your Mother doing? Do you have siblings? I found my brothers and sister a great support. It definitely helps talking to people that have been in similar situations so you are in the right place. 
If you have any questions I’m only a message away. If you need to rant or get anything off your chest the same offer applies. Take care of yourself. X

Hello and thank you for your reply. I’m so sorry to about your dad. Life is so unfair at times as you say. I am an only child and my mom brought me up on her own. She worked hard and has always been an inspiration to me. We look after each other , we are best friends and she is a fabulous nan to my two children. She is now remarried to my step dad who is fabulous. He has just had his 5 year all clear from bowel cancer and now this. We were about to go on holiday in august to celebrate. Anyway my partner is a great support too but no I have no siblings. The anxiety of the forthcoming news is killing me. I’m thinking the worst but am desperate for better positive news. I felt far more hopeful with my step dads cancer but this cancer is just so awful. Did your dad have the Whipple ? I’m praying they give this to my mom, I don’t know what makes this inoperable? As far as we know it hasn’t spread . Each hour seems like a lifetime right now. Thank you so much for your support xx

Hi, hells68,  your mum's story chimes with me as I had a similar start to my experience with this cancer. I hope she's able to have the surgery (I wasn't as my cancer had already metastasised) I did have a stent fitted which quickly dealt with the jaundice and other distressing and painful symptoms you describe. I went straight on to chemotherapy, and despite some problems and a couple of spells in hospital with infections I am still feeling fairly well. The doctors are now changing me to a different chemotherapy for the next three months so I'm hoping that will buy me some more time, as yes the prognosis isn't a long term one.

I do hope your mum is able to have the surgery and that it's effective. And if not, that she responds well to chemo or other treatment. McMillan, or your local Maggie's Centre, if there is one, can be a good source of information, advice and support. 

Sending her my best wishes.

Love and peace

K xx

Oh Hells68 that really is terribly cruel, to have just received good news on one hand and such devastating news on the other. Im glad that you have a supporting partner. It really does help.

My Dad had the whipple Surgery 25th July 2019 and recovered really well from it. Unfortunately he had complications from the chemo and developed pneumonia in March 2020 and while in hospital he contracted COVID so that gave a perfect environment  for the cancer to come back much quicker than it probably would have. His immune system was non existent at that point. 

The main things that make it so inoperable is the patients overall health, they need to make sure they are physically able for the major surgery but also where the tumour is positioned. We were told Dad qualified for the surgery as it was a slow growing tumour in the Bile Duct itself and had not spread to either side or the lymph nodes but they even warned us on the day of the surgery that they wont know what they are dealing with until they get in there 100%. 

There are also drug trials too. My Dad started a drug trial but really at that point he was too unwell. They explained to us that sometimes people who develop bile duct cancer have the BRCA2 Gene. Dad got tested and they discovered he had a very rare FANCA Gene so they put him on a gene inhibitor drug to prevent the cancer growing.

Its just such a stressful time. I remember googling it at the time and then regretted it. We just took every day as it came and thats all you really can do. 

Feel free to ask any questions you have along the way. Hospitals can give out so much information , sometimes its great to use this forum as a sounding board and people can help you with their experiences of certain medications. 

There are options so stay positive and take it one day at a time xxx 

Hello K , I’m so sorry to hear of your situation but also send positive wishes to you. I do hope the chemo halts things for you or better still puts them into reverse. Thank you for your reply. My mom received some news … just that she has a telephone consultation tomorrow with the doctor who discharged her from hospital and an ercp (camera / brushing) next Friday. That’s 8 more days away. The wait is horrendous. On a positive, my mom is home, no pain or very little and her jaundice has nearly gone. She’s eating well and feels well ? Where’s the pain and jaundice? She’s had no stent fitted. She is really positive too. Thanks for replying to my post . Big hugs xx

Hi Lils I appreciate your reply it must still be so raw for you to talk about your beloved dad. He sounds like a fabulous man. My dad also swims (daily) open water swimming too and surfing! Thanks for sharing your dad’s story. Heartbreaking as he sounds like he had a great shot at kicking this thing. My mom is actually far better than I expected. She’s not in pain ? Jaundice has nearly gone, she is eating little and often. Not loosing weight. Feels well in herself. She went into hospital with pain but now it’s all but gone and she hasn’t had a stent put in? She had a phonecall from hospital booking her in for an ERCP? ( camera and brushing) but not for another 8 days. The wait is agonising. I’m sure you’ve been through the same. I’ve made contact with Macmillan support who were fabulous on the phone. Hope you and your mom and family are doing as well as can be xx

Hi all just an update. Mom is doing fine. The hospital that she has been referred to is now requesting a PET scan and PTC Biopsy and drainage still with a view to hopefully surgery if these come back as they would want. Living on my nerves. Praying the surgery will go ahead. Anyone have any experience of these procedures? 

Best wishes to your mum and to you. I don't have any experience of these procedures, personally, but hoping it works out for her. She is the same age as me, no doubt looking forward to an active retirement, and then this comes along. It's hard. Hope she can have the surgery. 

K xx

Hi Hells68, keeping you in my thought and praying for the surgery !