Jake’s Fibrolamellar Fight

(Last Updated On: May 23, 2014)

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I’ve been asked to tell Jake’s story.  I don’t know if you’ll be interested.  Why would you be?  After all, we’re strangers. It’s not happening to you.  It’s not happening to me.  It’s happening to my son. My youngest son.  My amazing, determined, strong, funny, young man, my son, who will not let this Cancer beat him!

It started about 4 years ago.  Jake had stomach pains and felt unwell.  He went to see our GP.  He was told he probably had Irritable Bowel Syndrome.  OK, that’s not so bad, a bit of medication and all will be ok.  Or so we thought.  Jake was getting more and more painful episodes.  He went back to the GP.  “Maybe it’s not IBS”, his doctor said, “maybe it’s a Stomach Ulcer”.  That’s not so bad, it can be treated.  Time passed and Jake was still getting episodes of severe pain and generally feeling unwell.  He put it down to the Stomach Ulcer and alcohol not agreeing with each other.  Jake was the typical young lad, going out at weekends, socialising with his mates and having a few beers.

Jake tried to put his ill health to one side.  He was adamant he wanted to join the Army.  He went on a course at the local college and passed it with flying colours.  He put in his application to the Army. He went through all the stages until it came to passing the medical.  His application was rejected.  Jake applied on two further occasions.  Each application was denied.  He was told after his last rejection that there were unresolved medical issues, and he would not be permitted to apply again until he had been signed fit and well for a clear 12 months by his GP. Jake was disappointed.  It was his dream job and he had trained hard.

Jake continued to have episodes of severe pain.  One evening, he was doubled over in agony.  He couldn’t stand it any more.  The GP’s surgery was closed so he went to A&E.  After a very long wait he saw one of the on call doctors. Jake was told he probably had Gallstones, to take some painkillers and go home.

Jake put up with the pain and tried to continue with his life.  He avoided alcohol.  He was still experiencing excruciating pain. Another visit to A&E ensued.  This time they carried out an ultrasound.  Jake was told there was nothing wrong and he was to go home. Again Jake tried to ignore the pain and continue his life.

Last Christmas Jake spent time with the family.  He ate loads but lost an awful lot of weight.  He wasn’t the biggest lad anyway, but he was looking so thin and grey.

In February he rang me while at his girlfriend’s.  He felt awful and really couldn’t cope with the pain any more.  I told him to go back to the hospital.  He said “What’s the point mum?  They won’t do anything.”  I must admit that I did raise my voice to him.  I forced him to go back to A&E.

He listened and went back.  He saw the same on call doctor as the previous year.  The doctor told him “Jake, you were tested last year, there’s nothing wrong”.  Jake was persistent and said he knew something was wrong.  The doctor agreed to an ultrasound.  He came back to Jake with the news that there was something showing on the scan.  They ordered an immediate CT scan the same day.  There were two patches showing on the CT scan but they couldn’t determine what it was.  The doctor referred Jake to the Liver specialist.

Jake attended his appointment and it was explained that there was definitely something showing but they had no idea what it was.  So Jake was tested for Hepatitis B & Hepatitis C, for coeliac disease and Cirrhosis and the very rare possibility it could be cancer.  An emergency MRI was scheduled.  “Don’t worry Jake, its just precautionary for Cancer.  You’ve had tummy pain for 4 years, it’s not going to be anything serious”, one GP said.

Slowly the results came back.  Each time, we received a telephone call advising us to visit the surgery.  We were told by the GP, “It’s good news, it’s not coeliac disease. It’s good news, it’s not Hepatitis.  It’s good news it’s not Cirrhosis.  Each time we got a result, I was thinking, “It’s not good news, all the diseases that we can live with are being ruled out!”

Four weeks later we received the appointment for the “emergency MRI”.  We then had to wait another week for those results.  In the meantime I received a telephone call from a different hospital.  “It’s important that Jake attend an appointment this coming Tuesday, can you make sure he does?”

Alarm bells started ringing!  I felt sick to my stomach.  A different hospital just doesn’t telephone out of the blue with an appointment that they are adamant we should attend.

About an hour after, the telephone rang again.  It was Jake’s Liver Specialist.  He delivered the news over the phone that he suspected it was a very rare cancer.  A special conference had been organised with other Liver specialists in the South West.  They all determined that Surgery was the only option and we were to attend the appointment on the following Tuesday to find out more.

We met the surgeon and the specialist cancer nurse at the appointment.  They confirmed we were dealing with Fibrolamellar Hepatocellular

Carcinoma.  “Excuse me now!  What? What’s that? We’ve never heard of it”.

We were advised that the only option was surgery.  Chemotherapy and radiotherapy were ineffective against this cancer.  The surgeon told us that they would remove a 5cm tumour together with 50% of his Liver. Jake also had a 3cm lymph node mass surrounding his hepatic artery. This needed to be removed at the same time.  We were told that the surgery was extremely risky and 2% of patients died during the surgery.  There were further risks associated with the surgery such as bile leaks that may cause heart attack, septicaemia, pneumonia and other infections. We were also told that if Jake didn’t have the surgery then he probably wouldn’t be with us in 12 months.

It was suggested that we research the disease on the Internet.  There wasn’t a lot of information out there. And what we found was pretty depressing. Out of all the websites we came across, statistics showed that no one had survived past the 5 year mark.  We were pretty shocked.  We all think we’re invincible.  Surely this can’t be the case?

We came across a website dedicated to Fibrolamellar Hepatocellular Carcinoma, The Fibrolamellar Cancer Foundation website (which can be found here: www.fibrofoundation.org.)  They are carrying out research to try and find an effective treatment and/or cure.  At the moment the only option is to cut out the tumour.  The problem is that the majority of cases are diagnosed when the cancer is at an advanced stage.  This is because the disease is so rare and the symptoms very common.  The chance of getting Fibrolamellar is 1 in 5,000,000.  That equates to approximately 200 cases per year worldwide.  So Jake is very special! There is a very high recurrence rate with the majority of patients not surviving over 5 years.  The prognosis is pretty bleak.  What we have found over and over is “if we had caught this earlier then there could be a greater chance of survival.”  If the tumour is caught when it’s in it’s early stages just in the Liver, then there is a higher chance that it won’t come back.  If it has spread to the lymph nodes then the risk is greater that the cancer will return.  Because the Liver is full of blood it sends the cancer cells all around the body.  Fibrolamellar can then present itself in any other part of the body.  The only option is to cut it out if that’s at all possible.  If it’s not possible, then Chemotherapy and Radiotherapy may be used as a palliative option.  Liver transplant is not an option because the cancer cells have metastasised to other parts of the body and will return to the Liver through blood flow.  Fibrolamellar is different to normal Hepatocellular Carcinoma (HCC), in that the Liver is otherwise healthy in Fibrolamellar patients.  Patients with normal HCC usually have cirrhosis and scarring prior to the cancer cells forming.  Fibrolamellar typically affects teenagers and young adults although there is a reported case of a 2 year old recently being diagnosed with the disease, and the eldest person to be diagnosed was 74.

Jake had his surgery on 7th May 2014.  He ended up having 70% of his Liver removed, together with a very tricky lymph node removal. He was in ICU for 2 days where he suffered an allergic reaction to an anti sickness drug that raised his heartbeat to dangerous levels.  He also had an allergic reaction to the adhesive in his dressings.  His wound became infected and he needed high strength antibiotics which didn’t agree with him.  We had a pretty rough 12 days following the surgery.  We go back to the hospital for a follow up appointment on the 12th June.

Our GP didn’t know anything about this disease, so in a way, we had to educate her.

Jake decided that he wanted to do something to raise the profile of this illness so that more people could possibly be diagnosed earlier. If we can get people to be listened to and taken seriously then maybe this would be the case.  He set up a Facebook page dedicated to his story:  Jake Stafford Fibrolamellar HCC. Since setting up the Facebook page, we have been in contact with someone who has had the disease since 2001 and she has gone through 3 surgeries so far.  Another  patient has been living with the disease for 11 years.  And we have also had contact from another Fibrolamellar patient who is currently fighting a very difficult battle with this nasty disease.  We are supporting each other through this.  There is hope.

We are organising a fundraising fun day to be held during August (date and venue to be confirmed).  All of the proceeds will go to Clic Sargent, MacMillan Cancer Support and Jake’s appeal, The Jake Stafford Fibrolamellar HCC Appeal.  Jake is in need of a wheelchair as he gets very tired after a couple of minutes of standing or walking.  He still wants his independence, so a wheelchair would help with this.  He would also like to seek further advice and treatment from Specialists in the United States.  They have had far more cases of this disease and so have more specialist doctors.  Jake would like to visit those specialists and researchers to help with treatment and finding a cure.  The more we can raise the profile of this disease, the more people can be helped and hopefully a successful treatment and cure can be found.  We are in the process of setting up The Jake Stafford Fibrolamellar Trust and registering this as a charity.  We’re hoping to be able to provide a support network for newly diagnosed patients in the UK.

Many of Jake’s friends have said to him, “How can you still be happy after being diagnosed with this cancer?”  Jake’s reply, “I’m still me, I’m not gonna let this get to me!”

I’m so proud of him.  He’s a funny guy with a lot of fight!  We’re not going to let this beat us.

Jake’s story.
By his mum,
Teresa Stafford.

Jake has a page on facebook – You can find it here: https://www.facebook.com/pages/Jake-Stafford

And Jakes fundraising page here:https://fundrazr.com/campaigns/alfs4

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