Mum diagnosed with gallbladder cancer

Hi Katiejane,

I am so sorry to hear about your mum. The hardest part is waiting for results.

Until you know what you are dealing with you can never really know how to react or plan. It’s like being in a state of limbo.

I went to work as normal on the 2nd April 2024 with some abdo/side pain (which I had felt since Xmas but also put down to muscle aches) but that day ended up in A&E and then much like your mum had to have a CT, MRI and then Liver Biopsy as they found gallbladder cancer which had already infiltrated my liver. 
As it is so advanced I am not eligible for surgery and therefore am having 2 types of chemotherapy and an immunotherapy which I started yesterday and will be for 24 weeks.

I am hoping if there is significant improvement from this I will be referred back to the surgeons for surgery.

From what I have learnt so far the treatment types are very dependent on stage of cancer and spread so until the results are back for your mum I would urge you to remain positive.

The most important aspect of this journey for me so far is to keep positive and upbeat as much as possible. It is difficult but something that is becoming second nature with each new day. Allowing myself to be flooded with positive energy will put my body in the best position to fight and I am sure your mum will find the same strength within herself.

I hope this has been of some help I am only at the start of a very long journey but I know how hard it was to find someone else with this rare cancer so will try to help as much as I can.

Much love x

Hi Katie Jane

Sorry to hear about your mum.  I hate to say it but from what I have read and my own experience is by the time we get physical symptoms,  enough for them to do a CT scan, it has already spread.  Mine into my lymph nodes around my liver.  Originating, they are not sure of the primary source but have taken it as the bile ducts.

Now on Immunotherapy and chemo.  8 cycles.

So far so good. Though having just had day 1 of 4th cycle the side effects seem to be intensifying.

Positive mind set is very very important. Immunotherapy if she qualifies is definitely the way forward with cancer treatment.  It's learning to live with it,  not die from it.  I did not want to know the prognosis as this is different foe everyone and one you have heard it, you cannot unhear it.  Write a list of questions for the consultant when you get to see one.  Have someone else there to take notes.  There is so much to take in and process.  Just take one day at a time.  Wishing and your mum all the best. Xx

Thank you so much! Do you think it’s a good sign that we’re meeting with a surgeon on Wednesday (first meeting since CT scan), as this potentially means she may be eligible for surgery? I wish you all the luck with your treatment x

Hi, 

It sounds like it could be a positive sign
I am guessing they would have had an mdt (multi disciplinary meeting) about your mum based on her ct results and if the outcome of that was to meet with a surgeon rather than an oncologist then that would offer some hope for surgery. 
I’m keeping everything crossed for you that it is a positive sign x

Hi. My mum's currently undergoing treatment for this cancer.  How are you doing? And your mum? X 

Hi, she’s not doing great unfortunately, surgery isn’t an option & we’ve been given a prognosis of months. Just waiting to start chemotherapy to try and shrink the cancer but no cure as it has spread too far, but lots of delays and it keeps getting pushed back. How is your mum doing with the treatment? X

I'm so sorry. My mum is the same. Surgery's not an option. She was diagnosed in December and started chemo and immunotherapy.  First scan the cancer has shrunk she had another one today. She was really sick with 1 of the drugs so that's been stopped. And she's alot better. Hope she starts chemo soon. How are you coping? I was doing OK but been really down recently I think maybe as scan results soon Xxx

It’s so difficult isn’t it. How has she been with chemo symptoms wise? Has she had any hair loss? 
I’ve been okay the past week, when I first found out and for around 4 weeks after that I was getting upset everyday & just kept thinking and worrying about what’s going to happen. My mum looks well in herself, if you saw her walking in the street you would never know she has cancer and I think for that reason I’m still processing everything and finding it hard to believe the severity of it all. The only symptom she has is extreme pain in her stomach which she’s taking lots of medications for. It’s more the unknown that is causing me more upset than anything, I just wish I knew how she’ll be on chemo and how long she has left but I know that no one’s able to tell me when the worst will happen. How have you been feeling with everything? X

Sounds very similar to my mum. You wouldn't know she's ill. She's had hair thinning but still has her hair at the moment . She was very sick, but that should've been controlled with anti sickness and theres lots of drugs she was just unlucky with that I think. But she's so much better now. She gets tired and stuff though but she's good. Her only symptoms was also stomach pains which only happened at night and she had a sore back throughout the day. When she was 1st diagnosed they said months before treatment too my mum asked again and they said its hard to say but could be a year.  Your mum will pobably get immunotherapy too there's a new drug just been approved last year it seems good. Try keep positive as hard as it is.  It's just so unfair and so frustrating they can't get surgery. Xxx 

I took an new to this forum. I had endoscopy then partial removal of the gallbladder after finding 70 gallstones. The subsequent biopsy found cancer of the gallbladder and was told Friday before last. Monday I was with consultant who told me it was stage 3. Their aim is to remove the rest of my gallbladder, a section of my liver with associated lymph nodes. This will be followed by 4-6 months of chemo.

It is a shock, you feel helpless, sad, emotional and angry. What has helped is MacMillan their staff, the hospital staff and family supporting me with very positive vibes. It is a bad time but I took an trying to be positive and not over thinking about it.

Stay strong that too will help your mum.

I will post more as my treatment develops. I have had several tests, CT scans, blood tests, pro-op assessments, due for anaesthetic assessments and an MRCP scan.