Incurable Gall Bladder Cancer Diagnosis

I'm so sorry,  this is a heavy diagnosis. I also have gallbladder cancer and am starting Xeloda in 2 weeks. I've read a lot about this, and it seems that it is of pretty elusive cause. I hope you will find a good treatment. 

I’m so so sorry, Dondon. This sounds incredibly hard on top of the tongue cancer. (I know that sounds inadequate but I really feel for you). This group is small but really supportive and it’s a place you can just rant and everyone will understand.
The Macmillan phone service is amazing so do use it. I regularly cried all the way through calls and they were so lovely - it was the only place where I felt I could really talk. Do call them. They will be able to answer lots of questions for you as well.
I’ll be thinking of you x

Dear Irisgal, thankyou for replying. I am so sorry to hear of your diagnosis. I do hope your treatment works for you. 

I was told by my oncologist that I will receive chemotherapy (cisplatin and gemcitabine). I cannot find any information on how gallbladder cancer reacts to this treatment. 

I am being referred for palliative care but how long that will be I do not know. I am in limbo with everything at the moment. 

Please keep me updated with how things are going for you.

Take care

Dear Francesca, thankyou for replying.

It's the waiting and the uncertainty of whats going on that's getting to me. When I had the tongue cancer everything moved so fast and the macmillan team were fantastic but this time its very slow paced. 

I have had a little contact with a macmillan nurse and she is arranging palliative care at home for me. I haven't heard anything from them yet and unsure how long that will take. 

I will look into the macmillan phone service. I think this will be very beneficial to me as they will be understanding and will hopefully put my mind at rest. Also it's someone to talk to as I feel so alone at the moment.

How are you? I hope you are as well as you can be? 

Take care

I’m ok, looking after my mum so realise it’s very different. I’m tempted to say talk to your mum but I understand your reluctance in trying to protect her. It may help actually her in the long run to be able to care for you. I know I’d feel worse if I wasn’t able to. Also, I know I’d want to help my daughter, whatever the circumstances. I’ll stop there as i can get very bossy and everyone is different. 

I found IAPT good. It’s self-referral and might give you or your partner a place to talk. However, it’s Macmillan who have the cancer expertise. There’s so little information on gall bladder cancer but resist searching except on cancer chart and the NHS. This group is lovely. It’s a good place to ask questions and write things down.

take good care of yourself. I used Macmillan’s information about what to ask at medical appointments so you might want to look at that when you are ready. I made lists!

Dear Francesca,

I really understand your frustration.  In retrospect,  I suffered from gallstones for year, and was told over and over that I had gallstones,  but it was an elective surgery.  I finally got really sick with septicimia, they found a gallstone lodged in my bile duct, they removed it, and the next day they removed my gallbladder.  I went home, healing from the surgery.  Imagine my surprise when, 2 days later, the hospital called to say that, upon biopsy,  they found adenocarcinoma of the gallbladder.  The tumor had almost eaten through the gallbladder. I was T2b, meaning that the lesion was on the side next to the liver.  I then had a second surgery and they found tumor in 2 lymph nodes, but not in my liver. They are not sure where cancer might have metastasized in my body. So I'll have 8 months of capecitabine and hope that will give me 5 years.

This IS a really lonely cancer! I have connected with only 1 other person who is a fellow diagnosed. 

Dear Dondon,

I sent a reply,  and I think I mistakenly addressed it to Francesca.

Irisgal

Hi I did think I'd responded to your post but I'm away in France and I think I deleted my response by accident.

I'm Colette and I'm also in the same boat you find yourself in. I was diagnosed with stage 2 GBC aged 46 and my world fell apart at that time. I was the first person in my family to get cancer and being the youngest of 6 it was a shock. Our kids were 15 and 17 at the time and that was the hardest thing for me, telling them and seeing their world's fall apart and it was my fault... But, I'm still here, I'm now on year 7, yes that's right as crazy at it seems. I had a liver resection after the GBC was found inside my gallbladder and then went on to have 6 months of the chemo you've been advised to have, Gemcitibine and Cisplatin (GemCis).  At that time I had a lump in my throat, it turned out to be Papillary thyroid cancer and so I had surgery to remove that and all the lymphs in the right side of my neck, I then had radioactive iodine treatment.

The GBC was kept at bay for nearly 5 years but in 2020 it came back, metastasised to my abdomen, bowel and peritoneal cavity, I also had an ovarian cyst so I had a full hysterectomy and the decision was made to try and remove the GBC tumours. Once this was done I was told the cyst was actually a rare form of ovarian cancer, Mucinous but the surgery was all the treatment I needed for that.  Once I was healed again after that huge surgery I had another 6 months of GemCis in early 2021. 

Last year I received the news I had another new tumour by my urinary bladder, again after lots of discussions with the Christie hospital in Manchester they advised my team in Liverpool to try surgery again. It was removed successfully (open surgery again) and my last 2 CT scans have shown no new tumours.

My reason for telling you the whole story is to try and let you see that even though it's horrendous, and it's scary and it's not fair, the human body is incredible and can withstand a lot, I too have been told I should've succumbed to the gallbladder cancer within 3 to 6 months but it's 7 years and I'm still here, I've had 3 primary cancers now and yes its no picnic as you already know after your throat cancer but, where there's life there's hope, so go for the GemCis, it certainly has helped my case, it's unpleasant but I will pray that it will shrink your tumour and give you a better chance of having a longer life and I'm truly sorry you find yourself in this very small club because sadly GBC isn't as I like to call it one of the sexy cancers, it's a sneaky one that is shitty and so uncommon that research into it is sparse.

I hope I haven't offended you being so candid, but if you want to reach out or have any specific questions I'm happy to help if I can.

Colette x

Hi Francesca, don't worry about being bossy lol everyone's different and unique. I too can be bossy, dad bless him before he passed said I was bossy.

I have got 2 appointments next week. Got palliative care nurse visiting me Tuesday and on Wednesday having my biopsy in my liver not my gallbladder as I initially thought. When they receive results from biopsy they will confirm that the chemo treatment they've planned is suitable or not.

I too write everything down, questions etc because if I don't I get to my appointments and my mind goes blank.

My mum can't help me physically but she is there if I need to talk but at the moment I'm not burdening her too much has she is dealing with the death of my dad.

How is your mum? How is she dealing with her treatment? 

Stay strong for your mum 

Love to you both

Dear Irisgal, I'm so sorry sweetie. Yes it does appear to be a lonely cancer and I have read its quite rare.

Keeping everything crossed that your treatment is successful  

I have 2 appointments next week. Palliative care nurse visiting me at home Tuesday, it will be to meet me and have a chat. Wednesday I have my needle biopsy in my liver not my gallbladder as I initially thought. Once results are back they can definitely advise that the chemo (Gemcitaban and Cisplatin) treatment they have planned is suitable for me.

I am making a list of all the questions I want to ask the oncology doctor because when I was initially told of the diagnosis I didn't take everything in they said and I didn't ask them much as I was too busy crying .

If you need to chat or have a rant don't hesitate to message me.

Look after yourself and try to stay strong. Best wishes