New Petitions

Good morning. I am a 52-year-old sufferer of ocular melanoma. My tumour was identified during a routine eye test at Specsavers. Thankfully, a very good optician noticed it; it is known as choroidal ocular melanoma. I received plaque radiotherapy treatment for it in Gartnavel hospital in 2013. At the point of diagnosis, I was informed that it was a very rare type of cancer that could spread to my liver and that I would have to attend Gartnavel hospital for surveillance scans for the remainder of my life.

I am the Scottish representative of OcuMel UK, which means that I am the point of contact for newly diagnosed patients in Scotland. If someone needs support, they will ring the charity in England and then phone me, because I am the local point of contact. I would never have received support for my form of cancer, which I had never heard of, if it had not been for this small charity in England, and I would never have had the opportunity to meet other sufferers of this rare cancer.

I am here because I would like to bring to the committee’s attention the fact that, in Scotland, we are offered abdominal ultrasound scans only to track any metastasis to the liver, whereas fellow sufferers and patients in England are offered MRI scans, which make it possible for the cancer to be detected early and for them to receive appropriate treatments and to be entered into clinical trials. In Scotland, we do not have that opportunity. I am here to urge the NHS in Scotland to change its opinion that the use of ultrasound scans is sufficient.

I have brought with me Iain Galloway, who represents OcuMel UK. He is also a sufferer and his cancer has moved from his eye to his liver.

Hello. I am a stage 4 ocular melanoma sufferer. Seven or eight years ago, I picked up something in my eye. I was given plaque radiotherapy, which involves a radioactive plaque being sewn on to the outside of the eye and being left there for three days. It burns the tumour off. Unfortunately, two years after that, in 2012, the tumour started growing again. My left eye was removed and I now have a prosthetic left eye. Eighteen months after that—while I was receiving six-monthly diffusion-weighted MRI scans—it was, thankfully, picked up that I had metastases in my liver, which is where the disease spreads 90 per cent of the time.

Fifty per cent of all sufferers get metastases. With this form of cancer, that is common—half of sufferers get such spread over time. Thankfully, because the metastasis was picked up quite early in me, I was able to have the cancer removed.

That was in 2013. To date, my scans have been clear. I live a full life, I have a young family and a young son and I work full time.

10:00

Without exception, all the people who I meet who have survived the metastatic stage of the disease for any number of years had MRI screening. That screening picks up the disease at a point where it can be treated. With ultrasound, because the disease often appears in lots of different lumps and not just as one discrete nodule or lesion, by the time that it is spotted there are dozens of a similar size and it is too late to do anything. That seems to be the case around the globe.

We have collated a set of patient stories for the committee—I gave them to the clerk to hand out; if he has not done so yet, we will get them to you—that summarises our position.

I am here with Jenny Lewis because I work on behalf of OcuMel UK. I also run the pan-European rare melanoma group. I spoke at the American Society of Clinical Oncology’s annual meeting in Chicago. We talked about patient involvement in screening and patient-directed research.

The condition is rare, and the number of people in Scotland who present to their GP is minimal.

My perspective, and certainly that of those who I have met, is that doctors are not aware of the condition. The cancer is very rare—I think that it affects six or seven people in 1 million. Sometimes, a GP may say that they have only ever seen the condition once or that they have never seen it before. Often, a person relies on being referred to a specialist centre.

Key to identifying the condition has been referral to a specialist centre, such as Moorfields eye hospital in London, or to hospitals in Sheffield and Liverpool. At that point, the patient is given leaflets and information, because those hospitals have specialist ocular oncologists.

Usually, making progress involves a patient’s GP acknowledging that they do not know much about a rare cancer—GPs cannot know everything. My GP was proactive and did research, but that is not the case for everyone. I was escalated to a local eye centre, where it was recognised that I had a lump in my eye. At that point, I was seen at a specialist centre. The more rapidly that a person can be referred to a specialist centre—not just to a local consultant in secondary care but to a tertiary care centre—the better. There are three such centres in England, where more information about the disease can be imparted to patients. That is not possible at the lowest primary care level, because the condition is so rare.

Most certainly. With this cancer—and with breast cancer and so on—screening regimes operate subsequent to the primary disease having been resolved. Because the cancer is rare, not much is in place, and there is little understanding of the disease.

In 90 per cent of the cases when the cancer metastasises, as happens in about 50 per cent of all cases, it will do so to the liver, which will appear peppered or be dotted throughout—what is called miliary—so it cannot be cut out. If there are 100 patients with eye cancer, 30 of them will, within five years, have unresectable metastases in the liver and a further 20 per cent will present with metastases elsewhere—in the lung, in the spine and so on. By and large, we know where to look for the metastases. With ocular melanoma, we get that on a plate; we can MRI scan the patients, look at their livers and pick up 30 with whom we can then do something.

That is not the case with ultrasound, which often picks up the disease too late to be able to do anything about it. I mentioned the disease’s diffuse nature, with dozens of lesions of 1cm in size. By the time there is 25 to 50 per cent liver involvement, it is too late. However, if the disease gets picked up through MRI scanning, one of the many new treatments that have come out in the past two to three years can be used, and they are keeping people alive for a long time with a high quality of life. Indeed, in some cases, the treatments are curative.

In direct answer to your question, I think that the cause is a lack of understanding of the disease and its metastatic presentation.

My experience of being sent for ultrasound scans is that Gartnavel tends to push people out to local hospitals instead of doing scans itself. The local hospitals do not have the ultrasound-scan sonographers with the expertise to know what type of lesion they are looking for; indeed, they have admitted to me, “I’ve never heard of your condition, and I don’t know what type of lesion I’m looking for.”

I ended up having an MRI scan by default after the ultrasound scan came back inconclusive, because the sonographer admitted that she would not be able to recognise the lesions. As a result, Gartnavel pushed me off to another hospital for an MRI scan. The only reason that I got one was the fear that something was wrong.

I do not trust ultrasound scans, because I know that they do not work for us. Someone might get a scan once every six months and then go home still anxious. I do not trust the scans or the results that they produce, and I worry that the operator is not competent. After speaking to Scottish patients, I know that everyone feels exactly the same. Ultrasound scans are not beneficial to our mental health and anxiety levels.

On how this pans out with the medical community, there is no dispute that the enhanced MRI scan provides the ability to spot the disease. The contrast agent that is used allows active areas to be spotted, and diffusion weighting is used; it gives a better—indeed, the best possible—picture.

There is no dispute that the scan allows the disease to be seen earlier but, when people are pressed, those who do not support the scans often say, “It doesn’t make any difference, because you’re going to die anyway.” I have come across that several times; people have said, “Irrespective of whether the disease is spotted now, in six months or a year down the line when it’s big enough to be picked up by ultrasound, you’re going to die anyway.” However, evidence shows that there are life-saving treatments that treat the whole liver. As I have mentioned, most people cannot have the cancer cut out; it is peppered all over the place, so the size makes no difference.

As I have said, treatments are available. One is called chemosaturation—or CHEMOSAT—in which the liver is isolated and 100 times the usual systemic dose of chemo agent that might be given for another disease is given just to the liver for half an hour. The blood flow is controlled, the agent is removed from the bloodstream via a filtering mechanism and the patient goes home after a day in the intensive care unit.

Many patients who have had that treatment—it is offered by a company called Delcath—are surviving three or four years later with very good quality of life. They might have had repeated treatments. That calls into question the contention that ultrasound and MRI scans make no difference because people are going to die anyway. With that new treatment, which was presented at several medical conferences last year, we can save people if the condition is detected early. I think that, in a couple of months, there will be a big reveal of new data that will show the treatment in an even better light, because the technique improves as things such as the filtering mechanism are improved.

New treatments are available. Another one is the Sirtex system, but I will not go into too much detail on it. I have referred to the treatments in the handout that I submitted. We now know that early detection enables intervention that will save someone’s life or give them several years of high-quality life during which they will be working. We know that just from the UK, and I dare say that the results are similar elsewhere in the world.

The diagnosis normally happens at local hospitals, and then everybody is sent to Gartnavel. I know some patients who have gone down to Liverpool for proton beam treatment, because it is carried out there and not in Gartnavel, but most patients are treated with plaque radiotherapy in Gartnavel.

I do not think that there should be only one specialist unit. At times, I get confused and angry, because Gartnavel sits right beside the Beatson cancer centre, but the two facilities do not work together. The Beatson has technology that runs all through the night for Scottish cancer patients. I do not understand why the medical oncologists and the ocular oncologists do not work together, because they are next door to each other.

I attended Gartnavel in January and I have now been discharged. I cannot fault the treatment of my eye. However, when I asked the ocular oncologist in January who I should see for scans of my liver, the answer was that my local hospital would send for me in a year. That will be next January, which is worrying me because, by next January, it will have been 18 months since my liver was surveyed by ultrasound or MRI scan. I am in limbo because I do not know what is happening. The cancer travels through the blood, but I do not know what is happening in my liver, and I will not know until January.

I have spoken to my GP about the issue and she seems unconcerned. To give her credit, she has said that she does not understand the condition and that she follows the direction of Gartnavel. I do not think that ocular melanoma patients in Scotland are offered the same support and treatments as those with other cancers are offered.

I have asked for MRI scans, and there is a gentleman in the public gallery who has also asked for them. Most of the people I speak to about the issue have asked for scans. The answer that I got—you might find this shocking, because I did at the time—was, “If you come to my private clinic in Glasgow and pay me, you can have an MRI scan.” My ocular oncologist said that. They said, “We do not offer MRI scans because, when the disease travels through the liver, nothing can be done anyway.”

Yes, but that was the answer that I got when I asked. I have constantly been asking Gartnavel hospital, and I keep getting told that it does not do them.

10:15

Yes. I know a lady who attended Gartnavel last week who is a newly diagnosed patient. She has made history, in my eyes, because she was given a scan. However, the only reason she got one was because her liver was sitting too high in her body for the ultrasound to get a good picture of it.

That information is a little out of date. As Jenny Lewis just said, she spoke to a consultant who told her that it does not matter if they find something in the liver, because there is nothing that they can do anyway. Unfortunately, there is a bit of a lag in the medical community, given the rapid development in the field of ocular melanoma and others besides. We are going through a renaissance in cancer treatment—you read about it all the time. I am on immunotherapy drugs at the moment. More than two and a half years ago, I had a lump on my face, because the cancer had spread outside the liver again. Within two months of the treatment beginning, it had shrunk to nothing—my oncologist could not believe it.

Of course, all that is possible only through early scanning. At the moment, to try to collate the evidence to indicate that there is a benefit in early scanning, and thus that there are effective treatments, we have collated the patient stories of people who have benefited from the new treatments. I will use CHEMOSAT as an example, although there are other treatments. Medical papers have been published within the past year—so I am talking about recent developments—that demonstrate the efficacy of CHEMOSAT in the treatment of ocular melanoma metastases. We know that the treatment is effective only at relatively low tumour burden—some of the early trials were just trying it on all and sundry, and they found that it was much more effective when the cancer was caught early and patients therefore had a much lower tumour burden.

I would challenge the contention in the Government’s answer that you read out. I think that it was probably true in the light of the data that was available at the time, but more up-to-date information is available, and more is coming, too. We see it regularly. I think that there is just a time lag.

No—Iain Galloway can explain the scientific stuff a lot better than I can.

Yes. There are doubtless cost implications with the new treatments and so on, and it is worth noting that many of them are now available on trials. I have got my next set of three-monthly scans tomorrow, and I will find out my results—fingers crossed, touch wood—on Tuesday. However, I know what I am going to do if anything goes wrong—you have a plan B if you need it. There are a number of trials throughout Europe for the latest treatments. I have mentioned the Delcath system, and there is another one called IMCgp100, which is produced by an American company called Immunocore, which has been running a base in Oxford—that trial has shown great promise. Some of the treatments are not available on the NHS in Scotland or the rest of the UK, because they are quite new, but people can get them if they join the trials. People are surviving because of drug trials. That is useful for hospitals, in some respects, because it comes at little cost to them.

Yes. However, the Delcath system costs £35,000 privately. I know someone who has survived longer than I have with the disease, even though he has a more aggressive form of it. He has had seven of those treatments, but he has the most incredible cover through BUPA, and it has paid for them. Some people have had to pay out of their own pockets. Things are different in the USA, but I know of people there who have sold their houses to pay for the treatment. Crucially, however, they are still alive and are able to watch their kids grow up.

The treatments and so on at Gartnavel and in other places are out of date, but the bottom line is that the opportunity to take advantage of those trials, to pay privately for the treatments or to treat the disease by another means is only possible if the disease is picked up early enough.

We have the numbers up to 2014, when there were only 59 sufferers in Scotland.

It is about seven per million. The numbers are slightly higher in certain northern climates. For example, in Scandinavia, the figure is eight or nine per million. Scotland has a population of 5 million or 6 million, so we would expect between 40 and 50 new cases a year. I think that the figure of 59 sufferers in Scotland dropped to 47. That is how many people are diagnosed each year, and half of them go on to get metastatic disease. At the moment, nearly all of them will die, unless an individual is very lucky or pays privately for MRI scans, gets the disease picked up and then has one of the new treatments. Those are broadly the numbers involved, although they will vary from year to year. Between 40 and 50 people in Scotland will be diagnosed each year with ocular melanoma, which will metastasise for half of them.

Absolutely.

Yes.

It depends which centre people go to, but it is certainly not universal throughout the UK. However, there are specialist centres in London, Liverpool and Sheffield, for example. Once my eye was treated, I went to Birmingham’s Queen Elizabeth hospital, because it is well regarded and has, ironically, one of the top liver departments in the world. I thought that it would therefore be an opportune place to go, and the hospital gave me routine MRI scans. Southampton university hospital is probably the leading hospital in the world for dealing with ocular melanoma metastases. The hospital has taken a particular interest in the disease and its specialists have done very well. The hospital will routinely provide screening via MRIs post-primary.

Not every hospital will provide MRIs in that way. Again, if there is not the level of specialism in the hospital, people will not know about the disease, which is the issue that we discussed earlier. However, the specialist centres recognise what can be done. As long as people go to one of those hospitals, they will be given MRIs—as I was.

Exactly. OcuMel UK tries to funnel people into the specialist route through, for example, leaflets that show what they should be getting, which means that they are more informed when they go to the specialist centres. We have to funnel people into them somehow, and that is just one way.

I honestly think that it is widespread. The Scottish Government’s strategy was set out in the document “Beating Cancer: Action and Ambition”, where we read about pushing awareness of the “big four” cancers. However, I think that for the sake of the education of all of us—GPs, hospital staff and the general public—there should be greater awareness about eye health. I went to the optician just because I fancied a new pair of glasses—I had no symptoms—and I ended up being told that I had ocular melanoma. That could happen to any of us: it is a matter of, “There but for the grace of God go I.”

I will tell members what they might think is a funny story. My GP said, “This isn’t a life sentence. Go home and watch ‘Breaking Bad’.” I did not even know what “Breaking Bad” was. I went home, asked what it was, found out, and was not too enamoured by that comment. That showed me that he had no knowledge of my condition. I gave him an ocular melanoma leaflet and pleaded with him to look up the site to give him a little bit of information about why I was so worried. When I went back next time, he had not done so.

I was at my GP two weeks ago, as I was concerned about when my next liver scan will be. She said, “Och, it’ll be in a year.” They do not get how anxious the condition makes all of us.

Chapter 5 of “Beating Cancer: Ambition and Action” is all about early detection and diagnosis. That is what we are asking for. Eye cancer is not in that policy. Could that be included in that policy for early detection and diagnosis, please? That is what we need.

From the stories that I get from a lot of patients, they tend to think that Gartnavel hospital concentrates on the eyes and is happy once the eyes have been treated.

Very much so.

It does not move on to the medical side of things.

Southampton would be a good place to start, as the hospital there specialises in the area.

MRI doubtless has cost implications, but people are receiving ultrasounds anyway, and they cost a couple of hundred quid. An MRI costs £500 or £600. Probably £500 or £600 a year is saved by not giving a person an MRI, but a huge proportion of metastatic patients are picked up by them, as many cancers spread to the liver within five years. It is very sad that so many do. There can be a high hit rate of positive finds, all of which there are options to do things with. We would know where to look. We could point an arrow at the liver and say, “Look here in the next five years.” There would be finds in lots of people.