A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!

Dave Austin's Story

This story was sent in by Helen Austin, very shortly after her husband Dave died. It is quite long, but it feels right not to edit it in any way. Dave's story illustrates the fact that GIST can kill, and that several things may have contributed to Dave's death, less than two years after he first noticed that something was wrong.

First, it was five months before Dave agreed to go to the doctor. Then there were minor delays all along the diagnosis pathway and nothing had been decided three months later, even though GIST was suspected by Kings College Hospital.

It is easy with hindsight, to see what might have been done. Why didn't KCH refer Dave to the Marsden or to UCH, both with a lot of experience of GIST? They also have teams of experts, so one man's holiday would not have held things up. We will never know whether it would have changed the path of Dave's illness, and this knowledge does not help Helen and her boys now, but Helen and I hope that it might help others.

Judith

 

It was December 2005 whilst visiting family in Plymouth, Dave was lying on the bed reading a story to our granddaughter Sophie when he said that he did not feel right and had an uncomfortable feeling in the abdominal area, nothing too major just uncomfortable. The next morning it had subsided and we carried on with our weekend. Over the next couple of months he did not say much but occasionally I would see him rub his stomach, I told him to go to the doctor, but he said "it is only indigestion". Where once the "uncomfortable feeling" was few and far between it became more frequent and seemed to stay longer and eventually in April 2006 I managed to persuade him to go to the doctor, we thought that maybe he had a hernia. The doctor arranged for an ultrasound to be performed and it was during this ultrasound that a large mass was found around the stomach. Dave left the hospital and went straight to his GP, who "fast tracked" him to a consultant. The appointment for that came through within two weeks, unfortunately though it was the same day that I was having surgery Harrow which was two hours drive away, so instead of cancelling his appointment he took me to the hospital, settled me in, drove all the way back to Folkestone and was back with me by the time I came around.

The consultant did not know what it was at this stage, but did not think that it was anything to be too concerned about. He saw Dave a couple of weeks later but still was mystified and said he was going to discuss it at a team meeting, which he did. Following that we received a phone call at home asking him to attend the hospital for a gastroscopy, I am not sure just when that happened but it was only a couple of days or so. After that Dave saw the consultant who explained that he was still not sure what it was, the stomach was misshapen like looking at a dented football from the inside. He wanted an urgent CT scan done and said he would drop the request off himself that lunchtime. Dave at this time was getting rather anxious; he was not feeling well and did not know what was wrong with him. The "urgent" appointment had not appeared some four-five days later, so I telephoned the hospital and enquired only to be told that it was still on someone's desk as he was on holiday. I was angry but it did not do any good as it was still a week or more before it was performed, then we had to wait a couple of weeks for the result!! The results of the scan were once again discussed by a team and it was the general opinion that in fact whatever it was it was not coming from the stomach, but the pancreas or possibly the liver. A referral was made to Kings Hospital to the Liver Dept, more waiting, more worrying. We went up to London and saw a consultant at Kings. He informed us that a team of specialists had studied the CT Scan and had decided that the liver was not a problem but that there was a large mass on the stomach, which more than likely was a GIST. He explained that it would involve surgery and complete removal of the stomach. He said that an "urgent", (there is that word again) biopsy be performed, in fact he said within two weeks. Because we lived in Folkestone he said he would liaise with the William Harvey Hospital in Ashford to make it easier for us.

As you can imagine our journey back from Kings was not a happy one.

Time goes by; no appointment appeared despite lots of phone calls. We were going away for a few days around the middle of August so I informed the hospital and asked if the biopsy could be performed prior to that, but no joy.

We had our young granddaughter with us and went to Wales for a few days, staying in a remote farmhouse in the Brecon Beacons, really on reflection we should not have gone, Dave really was not well, he was uncomfortable, off his food, sweating profusely and extremely tired, but Dave being Dave he did not want to let us down so off we went. On the Sunday we had a very quiet day with friends because he was just not feeling right. We got back to the farm and he went straight to bed, only to wake up just before midnight in agony and asking me to call an ambulance, I had no mobile signal, did not really have a clue where this farm was so I had to go and wake the farmer's wife up and ask her to call an ambulance. Dave was taken to Abergavenny Hospital; I could not accompany him because I had seven year old Sophie with us. The next morning Sophie and I made our way to the hospital; Dave appeared very poorly and was on morphine, he really was not aware of what was going on. I had no choice but to leave him and get Sophie back to Kent. When I arrived back home I had a message on the phone to ring the hospital, when I did they informed me that Dave had been transferred to Cardiff and gave me contact details. I spoke to the hospital there and was told that they suspected a perforated bowel and would be performing surgery during the night. I phoned in the morning to be told all had gone well and he was comfortable, but that the consultant would ring me later on. The consultant did not ring me but a nurse saying that the consultant had asked if I would go to Cardiff as he did not want to speak to me over the phone. Yet another five hour journey, arriving in the evening, the consultant had stayed on to speak to me. Dave had suffered respiratory failure and was in ITU, he also explained that on opening up Dave for surgery it became evident that the bowel was not the problem but that there were multiple tumours, affecting the stomach, liver, pancreas and wall of the abdomen, he confirmed at this stage that it was GIST.

It was not expected that Dave would survive the night so I stayed by his side all night, the next morning there was no improvement but he had not deteriorated. I went to find some accommodation and then spent the next five days with him. Once he was moved back on the ward I came back to Kent. He was transferred to Ashford a week later. The surgery itself had given him so many complications yet nothing had been done. He was very weak, hallucinating and very depressed.

He was in a ward in Ashford for three weeks, during this time not once did he have the curtains around his bed opened, he could not face seeing anyone so he lived in this curtained off environment just getting more and more depressed. I was told that there was a consultant at Maidstone who had knowledge of GIST, a Doctor Justin Walters, I thought that perhaps he may travel to Ashford to see Dave or in fact they may take him by ambulance to see him, but none of this happened, they seemed to be treating him for his post operative problems but not for the cancer.

On the 19 September 2006 I brought him home, it was a difficult journey because he had been cocooned behind curtains for so long, any movement distressed him, he had to shut his eyes all the way home, when we got home he got into bed which I had placed in the dining room end of the lounge/diner and basically he stayed there for weeks. He could not stand noise, movement or people and was not eating. We attended Dr Walters clinic at the end of September, and prescribed Glivec 400 mg, we were warned that it could have side effects but apart from the nausea and the awful chemical smell which seemed to be present all the time no other side effects were evident. However Dave remained bed bound only getting out of bed six weeks later to visit Dr Walters again. He was still losing weight and was getting so weak.

Just before Christmas he was admitted to the Pilgrims Hospice at Ashford where he spent Christmas 2006, they were excellent there and spent the time talking to him and adjusting his medication. It was while in the hospice that he started on Citaloprem, an antidepressant.

Initially it showed an improvement in his mood, but he was still so weak he just stayed in bed, still losing weight. He went from being a 15 stone man to 9 1/2 stone. His Citaloprem was increased and again a slight improvement. Then one day I am sorry to say I lost my temper with him, saying that it was alright for him but I was left dealing with everything, I was working full time, caring for him, dealing with financial matters that had arisen including sending our car back because we could not continue with the payments and I had not long had major surgery myself, I just could not carry on. He went very quiet and would not even look at me.

The next day I was shocked to find him sitting in the lounge, he was only up for half an hour or so, but gradually day by day he increased his time out of bed. Over the next couple of months he got stronger, gained weight and looked and felt good, he was so positive, his depression was under control and the Glivec was doing its job, the tumours were shrinking, and quite rapidly.

His company gave him a little work to do at home, thus keeping him on the payroll which helped tremendously and took some of the financial worries off us both. He appeared to be doing so well that we booked a holiday in Spain for September, just a week in a villa on our own.

Around June time he started complaining of discomfort around the liver, the CT scan was fine and the doctor said it could just be scar tissue. He continued to have discomfort which seemed to move around the abdomen generally, his generally condition was slowly worsening, he was still mobile and very positive, but the little walks with the dog were getting shorter and slower and he just seemed not right.

I was worried about the holiday, as we had no medical cover for the cancer, he had seemed so well when we booked, I talked to him about cancelling but he insisted that he was going ahead with it, he wanted to have some time with me and he said I needed the break. We flew out to Spain on the 15 September; he was fine although very tired when we reached the villa. We had a nice relaxing break, he spent most of the days asleep on the sofa inside but I chilled out by the pool. We went for a little wander in the evening and an ice cream. The flight home seemed to completely wipe him out and on landing I had to request assistance and they were brilliant, they got us through passport control, collected the luggage and took us right up to the bus stop where we had to catch the bus to the car park.

The following day, Dave had a CT scan booked, he was dreading it, I think he realised that something was going on. The following week we were back at Dr Walters clinic, to be shown the scan and confirmation that the Glivec had stopped working and the tumours were once again growing. Dr Walters said he was going to apply for funding to increase to 800 mg and in the meantime because we had a few weeks supply we should start on the higher dose straight away. Dave was in tears on the journey home, it was so very sad, what could I say to console him, he had such faith in the Glivec.

That night he was in absolute agony, so much so that I had to call an ambulance and he was taken to A&E, of course no-one there had heard of GIST and I spent the whole night explaining to everyone who came to see him what it was. He was given morphine which he was self administering. He was transferred to a ward and stayed there for three days before being transferred to the hospice.

The following morning the doctor from the hospice telephone me at home, to tell me that they were quite concerned about Dave and to explain that they had put him on a syringe driver. I went down to the hospice he seemed fairly settled. The next day he was worse, the staff asked me if I was going to stay, it shocked me, did they really think it was that serious? They also suggested that my sons who live away come down. They came down the following day and the doctor spoke to us explaining that Dave was in the terminal stage of life, the boys were devastated and spent time saying goodbye, I decided not to stay, I was only ten minutes drive away so I went home. Imagine my surprise when the next morning I walked in and Dave was sat up in bed eating a banana - how dare he!! No one was more surprised than the doctor and his medical team; it had not been just his opinion of Dave's condition but everyone else's. They were amazed.

He was very weak so they put him on a course of steroids; he stayed in for a couple of weeks before coming home again. Although weak once home, he was so very positive, started doing a bit of work, got involved in his family history, which was his passion and talked about the future. He said that if funding for the higher dose of Glivec was turned down he was going to fight for it. Fighting Talk!

He was fine for about ten days or so, and then I noticed that he was sleeping more and more and he was not getting any stronger, washing himself was an absolute chore and he was exhausted after any exertion.

We were due to go back to Dr Walters on the 19 November, but there was no way that Dave could make the journey. Dr Walters telephoned me to ask me how Dave was, he said that funding had been approved however in view of Dave's condition and the fact that he had already been on the high dose for six weeks with evidence of no improvement, he would give him a break. That day I had given Dave the last Glivec that I had at home.

From that moment his conditioned deteriorated, it appears to me now that although the Glivec was not shrinking the tumours it was slowing down the progression. Dave had Alfentanol in his syringe driver and this was being increased daily, we could not get on top of the pain, but obviously the higher the dose of that the more confused he was becoming. He stopped eating, and just could not stay awake he would wake up and fall asleep in mid sentence. On the Saturday the district nurse did try and tell me that she thought he was reaching the end of his life, but I just said "we have been here twice before". However I was so concerned about him I stayed with him all Saturday night, I called the doctor out who gave him some valium as he was a little distressed, and sadly he lost his fight at 7 am on Sunday 25 November 07.

Dave was 54 years old, we have been married for 31 years, have four sons, Jonathan 29, Richard 27, Christopher 22 and Simon 20 and a beautiful 8 year old granddaughter Sophie, who he absolutely adored. We will all miss him. Right at the moment I cannot imagine life without him. We love you Dave.

Helen Austin

 

GSUK's Chair Nic Puntis discusses the BBC's report on the Cancer Drugs Fund on BBC Wiltshire Radio - NEWS>>>.  

Michael Sayers...news

Update on GIST clinical trials that are recruiting and in the pipeline....

Forthcoming Patient Meetings

  • Friday 6th October in Cardiff
  • Thursday 7 December in Edinburgh
  • Friday 9th March 2018 in London
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More information will appear on this website in due course.

We have launched our first GIST patient survey and hope to gather a better understanding of the landscape for GIST patient treatment in the UK. The survey closes on 10th September 2016 so if you would like to participate please complete the survey by clicking this link

'ALT' GIST Trial to open in the UK soon! We have been alerted to a new trial that will be opening in the UK in the near future for metastatic GIST patients. Read more on our Trials & Research page 

PAWS-GIST Clinic 7 - Newsletter June 2016

GSUK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.

GSUK Research Update 2016 - Read all about it here

NHS England's Sarcoma Service Specification consultation is open until Weds 20th April 2016.       Please register your views by responding directly via this link.                             GSUK's response can be viewed here

Cycle for GSUK! We have four allocated charity places on the RideLondon event for this year and also for 2017 and 2018. Go to our News page to find out more!

The Masitinib Trial is now open.  For further details of this trial, and to find out which centres and clinicians are involved, please go to our Research & Trials page. 

Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients! Read more!

Can you help Professor Eamonn Maher with his research Study? If you have had, or have, two or more primary GISTs, or a GIST and another tumour, find out more at the bottom of our research page

PRESS RELEASE - UKTV announces GIST Support UK as its Charity of the Year 2015

TUMOUR BANK UPDATE: "We have been granted approval from the NHS ethics committee for our National GIST Tissue Bank which will store these valuable GIST tumour samples for research. If you are about to have an operation and would like to donate your tissue for research please email  with your contact details. Visit our Retention of tissue page for regular updates.

Scottish Sarcoma Network: Interested in attending their Sarcoma education days or finding out about the services on offer ? Read our News page

Use of human tissue
Do go to our new "Retention of Tissue" page and please sign a consent form!

GSUK funds research!
GSUK provides £20,000 from donated funds to help start a research project at the Royal Marsden. Visit our News page for further information and picture.

Funds being raised for UK PAWS GIST clinic
See our News Page for more information.

NICE approves improved treatment for ascites
The PleurX system allows the patient to drain fluid from the abdominal cavity without having to pay repeated visits to hospital. More information on our News Page.

European Commission approves three years' adjuvant use of Glivec
Visit our News page for more details.

Masitinib
A press release in February claiming the effectiveness of this drug as a replacement for Sunitinib appeared to be premature at the time. However subsequent news may be more encouraging! See our News page for more details.