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The University of Southampton
Southampton Clinical Trials Unit

Championing research into mesothelioma

As the NERO mesothelioma trial opens at University Hospital Southampton, we spoke to a patient and a Mesothelioma UK funded Cancer Nurse Specialist about why research into this incurable cancer is so important.


Helen Wilangowski, 70, was given a prognosis of just 18 months when she diagnosed with mesothelioma in April 2016. But thanks to improved treatments and being involved in a clinical trial her condition is now stable and she is championing more research into the disease.


Helen Wilangowski

I initially went to the doctors as I thought I may be having heart problems due to changes in my breathing. But when all the tests came back clear I was sent for a chest X-ray which showed I had mesothelioma. I had not heard of the disease, so it was a huge shock and it hit me badly, especially when I was given the prognosis of just 18 months. I didn’t even tell my children for the first few months as my daughter was doing her finals at university and I just didn’t want to worry them.

Initially, I was not given any treatment. It was a case of “wait and see” with regular X-rays at Winchester Hospital to check that I was stable. I did ask about clinical trials, but at that time there was nothing for people who'd not had treatment. In the November of that year, I was referred to Leicester where I had an operation to remove the lining of the lung and the lining around the heart and cover them with a specialised surgical mesh. Part of my diaphragm was also removed and patched with the mesh. This was major surgery, but I just wanted the cancer out of me. I was then due to have chemotherapy, but doctors found a build-up of fluid in my lung, and I needed treating for this first. This set me back a bit, but eventually I began chemotherapy and had four rounds at Winchester hospital.

Getting involved with research

After my surgery and chemotherapy, I was well for about 5 years. Shortly after the COVID-19 lockdown I began going for walks with my husband, but I started to notice a pain in my chest, like I was winded. I thought this could be from the operation, but I mentioned it to one of the nurses and they sent me for some more investigations. Unfortunately, the cancer had spread to the lymph nodes in my chest.

My oncologist, Dr Nolan, was involved with a clinical trial at University Hospital Southampton called MiST4 and suggested I may be able to go on the trial. I was desperate for anything that could help so I jumped at chance of being involved.

The trial involved eight treatments over six months. Thankfully, the drugs were successful in keeping my cancer stable and I have been able to carry on with the treatments after the trial ended.

Finding more treatments for the future


Helen Wilangowski

Research is incredibly important to me and to other mesothelioma patients. It means a great deal to know that there is work being done to help find better treatments. Certainly, when I was first diagnosed there was not much out there, so it was wonderful to have the opportunity to be part of a trial. You go into it hoping for a cure, or at least that the treatment will be able to keep things stable. A mesothelioma diagnosis can seem so bleak, but research and trials give you hope and that is what you need.

For now, I am thankful that my disease is stable, but for how long no one knows. Therefore, it is fantastic to see that more trials, like the NERO trial, are now being done.

Research is incredibly important to me and to other mesothelioma patients. It means a great deal to know that there is work being done to help find better treatments. I am thankful that my disease is stable, but for how long no one knows. Therefore, it is fantastic to see that more trials, like the NERO trial, are now being done.

Helen Wilkes is Southampton’s first Mesothelioma UK-funded Cancer Nurse Specialist based at UHS and provides support and guidance for mesothelioma patients across the south.

Helen Wilkes

My role is to be there for mesothelioma patients from diagnosis right through their journey. Mesothelioma is such difficult diagnosis. It can come decades after someone was exposed to asbestos. Many people have never heard of it; they can’t say it; then they find out it’s incurable and that there are not many treatment options available, so prognosis is poor. It’s therefore so important that we have specialist Mesothelioma UK nurses who act as a lynchpin for patients and their families.

These patients often have very complex needs and symptoms, and I am there to support them as much or as little as they need. At certain times, everything will be fine and patients will be living a fairly normal life. But I am their back-up when things aren’t going so well or if they have concerns. They can ring me if they are worried or need advice between clinical appointments or if they just want to talk to a friendly, understanding voice. I work with the local mesothelioma support group HASAG and attend their monthly Patient and Carer Support Group. I refer patients to them for compensation and benefit advice as without HASAG’s expertise this can be a very complicated process. I also signpost patients to the hospital Macmillan and Maggies’ Centres for support. The holistic side of looking after patients is incredibly important, as well as the medical side.

I also work closely with the palliative care team at the hospital and within the local community who are experts at managing complex symptoms. This ensures that the patient’s quality of life is maintained as long as possible. Their teams will also ensure that their end of life wishes and needs are met.

Supporting mesothelioma research

Research into mesothelioma is vital. Before COVID-19, the rising rates of the disease was the biggest public health disaster UK has ever seen. We're constantly looking at how we can improve treatments and my hope is that we’ll start to see more precision medicine and targeted treatments for various sub types of the disease.

I’m very excited about the NERO trial opening as this will look at treatment when there are no other options left for patients. As Mesothelioma UK nurses we work alongside the research nurses at hospitals running trials like NERO and can let patients know when trials are happening and how they may be able to get involved. We also help to update the Mesothelioma UK app with information on new trials at the hospitals where we work and we cover the Mesothelioma UK support line, where patients and their families can call in for advice and support and we will often talk to them about trials. This is especially important for patients at smaller hospitals where there is no specialist nurse available, so I can advise them about what trials are out there and tell them to speak to their oncologist.

As Mesothelioma UK nurses we want to give people the right information to make the right choice for them about treatments and about taking part in research. But we also don’t want to give them false hope, so it’s important we tell them if a trial is not suitable or not available to them.

Hopes for the future

I always hope that there will one day be a cure for mesothelioma, and we can eradicate it. That may be a long way off but, in the meantime, it is great to see more research into targeted treatments. We also want to see more research that focuses on patients’ quality of life as well as treating the disease. There is no point being on treatment that has horrendous side effects meaning patients cannot enjoy the time they have left.  

Clinical trials like CONFIRM, which showed evidence that immunotherapy can benefit patients with relapsed mesothelioma, and the current NERO trial are exciting steps forward on the road to better treatments and an eventual cure.

The day my job no longer exists will be the best day because it means we have got there.


Read more about the opening of the NERO trial here.


Watch our video on the NERO trial


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