New diagnosis

So it is in my liver and the consultant said I would have surgery in 4-6.  weeks. to cut the liver out.

Hepato Biliary surgery.

Hi Martin 

I'm glad that you know what it is that your dealing with.

The liver will regenerate and it's best to have it resected to get the best possible outcome.

Take care & I will be thinking of you, sending positive vibes.

My CT scan is today, so I have left my specialist nurse a voice note to let me know the outcome asap.

The waiting is the worst thing.

Thanks for sharing 

Hi Martin,

Thank you for letting us know.

I just want to reiterate exactly what Jwing has said.  It may sound daunting, my husband had 70% of his liver removed along with his gall bladder and made a good recovery at the age of 76.  He was kept comfortable throughout his stay in hospital.   

It might be worth asking about a biopsy on the removed liver for molecular profiling after the operation?  We didn't know anything about it when he had his op, it can test for targeted treatment if needed in the future.  His hospital has now assured us they have kept samples that can be tested in the future if needed. 

Are you fairly active?  It might be worth thinking of raising your fitness levels in the 4-6 weeks if you are able to.  I believe it helped my husband's recovery.

I hope you have someone close to support you. 

Take care and ask anything, any time. 

Hi Cillajane & Martin

How good is the liver if like you said 70% was removed & all is well again, it's amazing for it to come back.

I've never heard of molecular profiling but I will keep it in my back pocket to ask my surgeon when I am called to the clinic to discuss the findings of CT scan.

I've phoned to enquire about the scan reporting time and was told 4-6 weeks! 

Nothing happens fast in NHS does it 

It is amazing isn’t it?  4-6 weeks is a long time, I’m hoping for you that they give a worse scenario & it will be much sooner.  Given this disease it should be a priority.  
The waiting is the worse, I hope you have some support close to you.  My husband taught me to count backwards from 300 when I can’t sleep, sometimes it works.  If my mind is really active I read with a torch. Breathing techniques are helpful too. 
Take care 

Hi

The waiting is the worst thing, I had my CT scan yesterday what a shambles.

The clinic was running 2 hrs behind! No Comms or anything - I had to go to the desk twice and found out the big CT scanner was broken & a mobile unit was set up in car park in a shipping container of all things! Honestly couldn't make it up!

I have complained to say I'm not happy about having to wait 6 weeks for a scan appointment & then a further 4 weeks before the results are published - what a joke! And I was made to wait again yesterday without any explanation. Not good

Hello MartinD,I was diagnosed 10/9/24 and had a Robotic Whipple 11/5/24. Today I was designated as cancer free no more treatments and a cDNA blood test every quarter with CT scans for 5 years. The initial diagnosis was pancreatic cancer from a biopsy after surgery the tumor was tested and diagnosis was distal extrahepatic bile duct cancer. These two cancers are easily misdiagnosed until the tumor is tested. I had 5 organs removed and was told by the surgeon the cancer will come back. My cancer is very rare and very aggressive. I switched hospitals and went from Memorial Sloan Kettering in NYC to New York University Perlmutter Cancer Center. I was offered a clinical trial for immunity and I was accepted and met all criteria. Before any treatment started the Doctors sent a sample of my tumor  along with a blood sample to a company in California Natera.com. They test for cancer cells before they can be seen on a CT PET or MRI scan. They see cancer growth at the cellular level.  My first test was done 9 weeks after surgery 1/11/25 and again on 3/27/25 both were negative. Between the 2 tests,I had 6 weeks of clinical trial immunity drugs chemo pills Capcitabine 6 weeks after last treatment they did second Natera test. Negative again and I was designated cancer free. Ask your surgeon to do this test for you and you will have a much more accurate idea of your cancer status. My cure could have been the immunotherapy or the Whipple. We will never know exactly but I am happy to be cancer free.the cost of the test is covered in the USA by insurance, if yours isn’t the company has lower rates for private pay not too expensive.  Natera.com the exact test is Signatura.  Also search your national health websites for clinical trials that you could be a candidate. Look for phase lll since those are less dangerous because they are last phase and testing for efficacy before approvals. Good luck with your cancer journey

Valerie

That sounds a dismal experience for you and the wait is excruciating.  I'm praying it is a false alarm for you, I'm not sure how accurate those raised markers are (if they can be caused my other things?) but must obviously be taken seriously & investigated.  

Hopefully you won't need the info but I believe there is a good booklet on Molecular Profiling on the AMMF website.  I like to think it's a new option if ever required.

Do take care & keep us posted.

Hi Cillajane

It was soul destroying having to wait yet again, especially when my health is in jeopardy, hoping it's nothing major and I'm not too sure about raised tumour markers they were 31 and theyre still in range but higher than they were last time, and I've had fever & abdominal pain, to add insult to injury I took a flipping tumble on Saturday and landed belly flop on my tummy, which hasn't helped.

I have heard about molecular profiling and I'm intrigued, I listened to a webinar on AMMF website yesterday & found it very interesting as there were 2 panelists who had survived cholangiocarcinoma and were 9 years and 7 years down the line & were ambassadors for the disease.

Very hopeful to know that, the one who had survived 7 years had the Whipple procedure done too!

I will ask my consultant about molecular profiling when I see him next.

Thanks & I will keep u posted - having my first Macmillan buddy call tomorrow too.

Hi Martin,

Just wondering how you are doing?  Any information for a date yet?  My husband did chase the hospital, I think after 2-3 weeks and he was soon booked in.

I realised I gave incorrect information before, it was 50% (not 70%) my husband had removed from his liver and his gallbladder at the end of last September.  He's now on his penultimate cycle of Capecitabine (standard follow-up treatment on NHS), just tired in the afternoons if he's been busy so he has a short nap.  Back at the gym since the 1st February. 

I hope you are doing ok, sending well wishes