I’ve really valued the emotional support from everyone around me, especially the team at The Christie - Katie Stephenson

Katie Stephenson – Parotid Gland Cancer Patient (Mammary Analogue Secretory Carcinoma)

Katie Stephenson

I’m 30 years old and November 2015 marks four years since I began treatment for parotid gland cancer. 

I live in Chorley, Lancashire and I work in Public Relations for the NHS. I remember the moment I found my first tumour like it was yesterday. It was July 2011 and I was having a lovely lunch in a beer garden in Lancaster (fish and chips if you were wondering!) when I felt a lump on my jaw. Always the hypochondriac, I dramatically said to my friend, "feel this lump, it must be a tumour!"

The lump didn’t go away and after weeks of poking and prodding by various doctors and a few courses of antibiotics in case it was a cyst, I had an ultrasound. I’d done a lot of research by this point and pretty much knew every eventual outcome so when he told me it was a solid mass I was as prepared as I could be to hear that news. After a fine needle aspiration, which basically meant a doctor stuck a tiny needle into the lump and drew some fluid from it to test, the results were inconclusive so I was delivered the news that I’d need a major operation to the side of my face to remove the lump (most likely a tumour) and half of my parotid gland. 

The parotid is part of a family of three salivary glands and it sits just below your ear. Again, I’d done my research and found that salivary gland cancer is rare with approximately 550 cases being diagnosed each year, most commonly in people over 50. The exact cause of this cancer is unknown and in most cases, tumours in salivary glands are benign. 

With any surgery there were also side effects and with mine these included facial paralysis, numbness and problems with the salivary function. Although these were worrying to me, I was only 26 at the time so my main concern was about the gigantic scar I’d have running down my face.

I had my surgery done in Preston and I cried the first time I looked in a mirror. I’m not an overly vain person (my friends might correct me on this!) but I had 40 stitches down the side of my ear and down my neck, a huge dent in my face where part of the gland had been removed and little to no movement in half of my lip. 

Katie post surgery

Despite this I waited patiently for the results of the tests…..I waited and I waited….20 weeks later I was delivered the news that it was a malignant tumour however it had been removed with clear margins which meant that they believed they had got it all. The reason for the delay was that it was a newly described tumour and not many labs had seen one before. Eventually I was given its definitive name; Mammary Analogue Secretory Carcinoma.

Almost a year to the day of finding the original lump, I found, and had removed a second tumour. Luckily this one was a lot closer to the surface and the surgery was nowhere near as invasive. At the same time as this surgery I received Botox injections to my face as I’d developed a relatively rare side effect of the surgery known as Frey’s Syndrome. This is basically a mutation of your salivary glands so instead of your mouth watering on the inside, I was getting a moist cheek – not a good look when you’re stood in front of a tasty buffet and your cheek starts watering!

Following the removal of the second tumour I was referred to The Christie to discuss my treatment options. As it was a relatively recently named tumour there was some uncertainty as to what the treatment should be. At the initial consultation we discussed the different options available to me; further surgery to remove the rest of the gland or a course of radiotherapy, both of which carried further risks and complications. In the end we decided that I would be a “watch and wait” patient, meaning I’d have scans and check-ups instead of treatment. 

This course of action didn’t initially sit well with me. I’d really struggled emotionally during the wait for my initial results and I didn’t think I had the strength and resilience to do it again, but with the support of my consultant we decided to go ahead. I now have bi-annual MRIs to my head and neck and I visit The Christie four times a year for check-ups. I won’t lie, sometimes it’s really hard to just sit back and wait. I check the area every day and I’m just waiting for the time I feel another lump. I did have a scare last year but thankfully it was just scar tissue from my original surgery on the move.

Throughout my experience I decided to document this by blogging (www.apainintheparotid.wordpress.com). I struggled to find a lot of UK based information about the condition so thought I’d share my experiences with anyone else who was going through this too. I post pictures, tips and updates and I find writing about my day, hospital appointments, scar progress (and the occasional whinge) extremely therapeutic.

I’ve also really valued the emotional support from everyone around me, especially the team at The Christie – shout out to Professor Slevin! Whilst I might not be having visible treatment, people should never underestimate the emotional impact a cancer diagnosis can have and the compassion and care from the team at The Christie has been second to none.

After my surgery I was left scarred, unable to smile on one side of my face and feeling very self-conscious. I became extremely anxious and pretty much ate my feelings, putting on over six stone in weight in the process. Over the last 18 months I have really seen an improvement emotionally, and finally managed to get some focus back in my life. I even went back to university to study for a postgraduate qualification, something I could not have imagined doing three years ago. 

If I was to give one piece of advice to anyone reading this who is going through something similar, it would be to never underestimate the power of emotional support. I know all too well how easy it is to retreat and want to deal with it on your own, but please just talk to someone. I’m a very independent person and leaning on others for support didn’t come easily to me but I learnt that this doesn’t make you any less strong or unable to cope and, without that support, I wouldn’t be the person I am today. I have a much brighter outlook on life, my confidence is coming back and I’ve started to shift some of the weight that I’d put on. I’m still a way from eventual discharge (pending no new lumps – fingers crossed!) and visiting The Christie has just become part of my life routine, but without the fantastic support of the team at The Christie, my friends and my family I don’t think I would have come through this so strongly.   
  

The Board of The Christie is focused on making it a world leading centre for cancer care and research - Kathryn Riddle

Kathryn Riddle - Christie non-executive director

Kathryn Riddle

I joined The Christie Board as an interim non-executive in May 2014 and became a substantive member of the Board a year later. From the very first day I was hooked!

I have been involved with the NHS as a non-executive for over 20 years, but in all that time I have never been directly involved with a hospital and I am delighted to have put that right.

The Christie is a very special place and part of that is undoubtedly because it is a specialist hospital. In other roles I have visited many hospitals and noticed that specialist hospitals or units have unique cultures because of the very specialised nature of their work.

Having said that, The Christie is both unique and very very special.

What makes it so special?

The staff and the patients undoubtedly, but also the volunteers and the people from Manchester and the surrounding areas. If I get a taxi to The Christie, within minutes the taxi driver is telling me how wonderful the hospital is and "how lucky we are to have such a great place on our door step." I have never encountered that sort of praise and loyalty anywhere else!

One day I had lunch in the hospital dinning room and found myself chatting to the man opposite. We both thought the cheese pudding was excellent! He told me that he came to eat here once a week because his wife had been a patient at The Christie for several years and they had made friends and grown to love the place. Now that she was no longer here, being back at The Christie made him feel close to her and he liked to check that the food and general feeling of the place was just as good as it had been for his wife.

The Board of The Christie is impressive, vibrant and totally focused on making the organisation a world leading centre for cancer care and research,  where patients feel safe, comfortable and reassured that they are ‘in the best place '.

The Governors from different surrounding areas want the very best for the patients and are rightly proud and protective of The Christie’s name and reputation.

I have been part of some appointment panels for new staff and have been hugely impressed by the calibre of people being interviewed, not only for their clinical expertise, experience and backgrounds, but for their genuinely caring and compassionate natures. Values matter!

I spent one lunch time with the director of nursing and quality, seeing how protected meal times work and the careful choice of food and quantities all tailored to individual patients’ needs.

On another walk about with fellow non-executive directors and staff, we discovered that chemotherapy treatments are also tailor made for individual patients - an absolute revelation which made me realise that I have so much to learn.

I love the gardens at The Christie, alongside the glass corridor, which are beautiful to look at and full of patients, families and even some staff on sunny days!

The volunteers and Friends of The Christie are truly amazing in their dedication and their extraordinarily imaginative ways of raising money. Bike rides, runs, abseiling, coffee mornings and evening events of all kinds to say nothing of the culinary expertise (my kitchen cupboard is full of Jean's special preserves! Her bramble jelly is just fabulous!) Like other members of the Board I am a Trustee of The Christie charity and I have been so impressed by the generosity of people who want to support the hospital. Through legacies, donations, and imaginative fundraising, thousands of people contribute to the work of this wonderful institution, and every single donation whether it be large or small is very much valued and appreciated.

This is a truly remarkable place, made so special by the people who work here and the patients they serve. I am proud to be a part of it and I have thoroughly enjoyed my first year on The Board.

As The Christie has played such an important part in developing radiography we are very proud to celebrate World Radiography Day - Rebekah Pearce

Rebekah Pearce - Christie Radiotherapist

Rebekah Pearce

World Radiography Day is celebrated on 8th November each year. Held annually, it provides an opportunity for radiographers worldwide to celebrate their profession, its importance within patient care, to promote the career to future students and increase public awareness of diagnostic imaging and radiation therapy.

So what is a radiographer and what do we do?

There are two different professions that share the umbrella term of ‘radiographer’ – diagnostic radiographer and a therapy radiographer. A diagnostic radiographer helps to diagnose any disease or condition and monitor internal changes. This is vital in diagnosing cancer and we have some very high tech facilities available at The Christie.

A diagnostic radiographer may use X-rays to look at bone anatomy assessment and cavity changes, to check if a bone is broken and if there are any foreign objects in the lung cavity; or they may use fluoroscopy to look at real-time images of the digestive system. Radiographers also use MRI and CT scans to build up two and three dimensional maps of body tissue; and angiography can be used to assess blood vessels. Ultrasound, most commonly used for checking the development of a baby during pregnancy, also has important applications at The Christie.

Therapeutic radiographers, or as they are better known, radiotherapists, work within the hospital oncology department. They use radiation to treat many different forms of cancer all around the body. This includes conventional External Beam Radiotherapy (EBRT) delivered by multi-beam treatments; brachytherapy where the radiation source is placed directly in the affected area; and stereotactic radiotherapy that allows small inoperable tumours to be treated in high dosages. 

For both types of radiographer, their knowledge base must include extensive understanding about the usage of high tech equipment, radiation dosages, pathology, anatomy and physiology of the human body. Moreover, the radiographer must have a caring personality. 

As The Christie has played such an important part in developing radiography over the years we are very proud to celebrate World Radiography Day and the vital work done by all radiographers around the world.

In 1901, The Christie was one of the first places to use X rays to treat cancer and in 1932 we developed the first international standards in radiation treatment – the Manchester Method. More recently, in 2002 we were the first place in the world to use image guided radiotherapy.

World Radiography Day is celebrated on 8 November to mark the anniversary of the discovery of x-radiation by Wilhelm Roentgen in 1895. Wilhelm experimented with passing an electrical current through a low-pressured gas which culminated in discovering and producing an electromagnetic radiation in the wavelength range now known as x-rays. 

He noticed that a number of objects could be penetrated by these rays, and that the projected image of his own hand showed a contrast between the opaque bones and the translucent flesh. This work resulted in him winning the Nobel Prize in physics.

He later used a photographic plate instead of a screen, and an image was captured. In this way, an extraordinary discovery had been made: that the internal structures of the body could be made visible without the necessity of surgery.

As World Radiography Day was on Sunday we decided to celebrate it in the hospital today with an information stand on display in the radiotherapy department with details about radiotherapy, how it works, how treatment is planned and examples of machinery.

Have you thought about a career as a therapy radiographer working in radiotherapy? If you are interested in finding out more details, please email RTEducation@christie.nhs.uk

Helping you to help yourself – our new web project will provide patients with an aid to managing their life with cancer - Dr Michael Leahy

Dr Michael Leahy - Consultant Medical Oncologist

Dr Mike Leahy

I'm delighted to announce the launch of a new project at The Christie which will provide patients who are living with advanced cancer access to a self-guided care plan to run alongside any medical treatment for their cancer.

The inspiration for this project came from the number of patients who kept asking consultants like me if there was anything else they could do to help themselves live with cancer.   

Alongside the modern up-to-date medical therapies being provided at The Christie, many people are interested in what else they can do to help themselves through diet, exercise, complementary therapies, talking therapies, mind and spirit and other activities.

A little research among patients attending one of our clinics demonstrated that many patients are already seeking out information on self-care for themselves, with many trying out something that they feel will be of benefit - from dietary changes to counselling or aromatherapy. However, our patients have told us that they feel there is more we could do in terms of giving advice and helping them make wise choices amidst the many therapies or products on offer that make claims of benefit.

It may surprise readers to know that there is increasing research showing that a well-rounded health and wellbeing programme focussing on improving and enhancing general health can have a significant impact, not only on quality of life, but also on survival. It seemed to us that there were things that people were missing out on that they could do to help themselves and we decided that, as their oncology team, we ought to be giving this more attention.

We applied for funding from the Manchester Cancer and Macmillan Innovation Fund for a one year project to develop a programme for patients with advanced stage cancer.  We were successful in our application and our project manager Liz Islam, started work in September.  We now have a year to construct a pilot programme, develop an interactive website and evaluate it with a group of patients. The working title for this project is PlanBe. 

The reason behind the name is that getting cancer is no-one's Plan A, but this programme is much more than a second thought - it is about being as well as you can for as long as you can; about being more in control of what is happening to you; about being more in the moment; about the idea of being responsible for your wellbeing.

We are really interested in people's comments and suggestions to help us in this project. What other activities do you participate in besides your cancer treatment? What have you found that has been really helpful, or not so helpful?  And, if you are living with advanced cancer, what help and advice about your PlanBe would you find useful? We'd love to hear from you about this project and what you think, so please email the project team at PlanBe@christie.nhs.uk

Treatment outcomes of surgery, radiotherapy and chemotherapy are all improved for patients who stop smoking and drinking alcoho - Charlotte Finchettl

Charlotte Finchett - Health Promotion Advisor

Charlotte Finchett - Health Promotion Advisor

As many people will know, October is Stoptober and there have been lots of adverts on the TV featuring the likes of Al Murray and Bill Bailey encouraging people to give up smoking.

We all know that smoking and drinking to excess are bad for our health. And if you have cancer it can even slow down or harm your recovery and limit your chances of a good long term recovery. That's why I find my role at The Christie as a Health Promotion Advisor so rewarding. I know I can make a real difference to people's lives.

Let me tell you about a 61 year old (let's call him Tom) who was due to start chemotherapy treatment at the beginning of 2015. When I first met Tom, he explained that he had been drinking 80 units of alcohol a week (the recommended weekly allowance for a man is three to four units per day if drinking on a regular basis). As I sat and listened to him, it became apparent that he was not really upset about his cancer diagnosis, but that his wife had left him through his ongoing alcohol problem.

We talked about his alcohol history, how much he drank and came up with a plan to reduce his alcohol intake. We contacted his GP to provide further help and support with reducing his alcohol consumption and his current home-life situation. The GP was very supportive and arranged an urgent appointment with Tom. I am happy to finish Tom's story by saying his wife is back living with him and she is supporting him through his cancer treatment.

Being able to help Tom and hundreds of others like him is what makes my job at The Christie so fulfilling.

I started working at The Christie in the medical records team, the day after I completed my last school exams back in June 1988. I have been fortunate to undertake various roles since then, including working in radiotherapy, and now as a Health Promotion Advisor. I feel honoured to work at such a valued organisation with such caring and approachable staff and am very lucky to be supported by a wide variety of health professionals.

The experiences I have gained in these previous roles have allowed me to gain an in-depth understanding how we treat patients at The Christie, the process they go through and what they experience when undergoing treatment for cancer. This knowledge and experience enables me to be an effective Health Promotion Advisor, supporting patients to live a healthier life, through their cancer treatment and beyond.

Treatment outcomes of surgery, radiotherapy and chemotherapy are all improved for patients who stop smoking and drinking alcohol. For example, smoking and alcohol can increase the impact of side effects during treatment, which in turn impacts on how well the patient can tolerate their treatment.

Patients who smoke and undergo surgery can take longer to recover due to the lower levels of oxygen within the blood. And, for patients with head and neck cancer, giving up smoking has a much greater impact on survival.

As a health promotion advisor I work with and support patients to make lifestyle changes with the aim of improving their treatment and recovery. I discuss smoking cessation and alcohol awareness with patients, carers and their families, and provide the relevant interventions they need to make changes. These can range from providing hypnotherapy to offering nicotine patches.

Some patients may not want to stop smoking, but whilst they are an inpatient they may not be able to leave the ward, so nicotine replacement is an option. Patients are encouraged to make their own choice and are given information about nicotine replacement.

Supporting patients emotionally and holistically is the key to any kind of therapy. Commonly patients have several concerns alongside their cancer diagnosis. For example, they may have financial concerns or have little social support. And it is important to remember that people smoke and drink for many reasons, such as stress. What I find is that they have associated the smoking habit with relaxation, as they are usually sitting down, relaxing, and taking time out from their day. I need to understand these reasons and understand how hard it is to make lifestyle changes so that I can identify all the support measures that are needed to help our patients through this process and ensure that everything possible is in place for them.

As a former smoker myself, I totally understand how difficult it is to change your behaviour and give up.

I'm so fortunate to part of The Christie's award winning complementary therapy team, led by the visionary Peter Mackereth. I feel supported by my manager Paula Maycock to go the extra mile to help our patients and am privileged to work closely with several departments, dedicated staff such as Professor Nick Slevin and Dr Andrew Sykes and the wider multi-disciplinary teams in place throughout The Christie. There are too many individuals to name, however staff at The Christie always go above and beyond the call of duty to put our patients and their families and carers first.

I can't even begin to tell you how wonderful it is to see patients smoke free and enjoying other ways of spending their money.

During the summer, I was speaking to a carer (let's call him Greg) who wanted to support his wife's smoking cessation by also stopping smoking himself. Greg explained that he used to ride his motorbike, but was unable to use it at the moment due to it being broken. He decided to save the money he would have spent on smoking to fix his motorbike - whilst supporting his wife. I saw him a few weeks ago and he and his wife are now smoke free and he got his bike fixed with the money that he saved.

Being able to help people like Tom and Greg are what drives me in my job. The difference it makes to people's lives is phenomenal.

Having cancer is a very difficult time for patients and their families or carers, but I know that if we support our patients to reduce their intake of alcohol and smoking it will improve the outcome of their treatment.

The patients are very receptive to talking with me and very grateful of the support that we provide. Every day is a different day but I enjoy it more and more. It is never too late make a lifestyle change. We are changing lives and supporting patients.

Forever hopeful - Manchester Cancer Research Centre - Jo Taylor

Jo Taylor - Christie patient

Jo Taylor

This summer I was honoured to be asked by Cancer Research UK to attend the opening of the new £28.5 million centre located across from The Christie, where I attend as a patient. I want to give you a feel for what happened on the day and what the fuss is all about.

The name of the campaign that the building was built for was the 'More tomorrows' campaign.

The Manchester Cancer Research Centre's (MCRC) main aim is to build a better quality of life for patients and families.

On arrival I meet Ali Barbuti from CRUK, Clare Dickinson from The Christie and Katy Holiday from MCRC.

I was delighted to meet Clare Callaghan @keepsmilingcsc who is surviving womb cancer and whom I was already following on Twitter. I also met Matt Dillon who blogs at www.cancercanwait.com and has a Facebook page about his experience with brain cancer. Matt had just finished radiotherapy for a reoccurrence and a week later was starting chemotherapy before flying back to his home in Australia. Good luck Matt with your treatment, thinking about you.

The day started with a video by Professor Nick Jones, who introduced the building and why there was collaboration between The Christie, Cancer Research UK and the University of Manchester. The main ethos is to drive personal medicine. New drugs rates are low and they want to match patients to the correct drugs that work for them. There was a BRCA 2 gene patient story where someone was being offered a choice of different treatments due to this new work.

The building is world class, bringing scientists, clinicians and other professionals together in one building to share information, learning and science.

There are five labs with different cancers being studied in each of them. Communication is key to developing new drugs which will be helped by bringing new talents together under one roof, which is why the MRCR will work so amazingly well. One example given was that there has been little impact on melanoma over the last 40 years but there are new treatments now coming through that have arisen through collaborations. There has also been research on small cell lung cancer and clinical trials to help patients live longer.
MCRC

MCRC building

PhD students at the research centre will be trained in the labs by world leading professionals. The MCRC is trailblazing by bringing scientists and clinicians together in one place.

In his presentation, Dr Allan Jordan advised that Manchester was THE best place to do work in cancer research and they are hoping to continue this with the new building.

In 1970, only 25% survived a diagnosis of cancer. Now, the cancer survival rate across the board has increased to 50%. Improving quality of life and overall survival are what researchers and clinicians are striving for.

Local statistics in the North West show that the death rates in Manchester total 35,000 people who die with cancer each year. The most prevalent diseases are breast, lung, bowel and prostate. Even though they are concentrating on these they are also looking at other cancers that may not be as common but may warrant research.

There were amazing facts and figures about your body. Did you know that in just one minute the body has made 300 million new red blood cells? We were told to hold our little fingers because there are more cells in your little finger than there have been people in the world! Mind blowing.

We need cells for growth, healing and making new cells. The reason why cancer happens is that there is an accumulation of faults. This can be due to the DNA, carcinogens, natural cell progressions, inheritance or a virus.

What the MCRC are trying to do is to help improve care by better understanding cancer - with better clinical understanding, better application of this understanding, and better clinical trials.

During the open day we also heard more about the history of The Christie. The hospital was 'born' in 1892 and was called "the home for the incurables" it was the first hospital outside London for the treatment of cancer. The Christie was named after Philanthropists Mr and Mrs Christie.

Interestingly, there was a development of a new practice called radiotherapy. The Christie had to buy lead radium and local brewery Joseph Holt helped to fund the purchase of radium so you can say that radiotherapy was originally was funded by beer! Cheers!

Manchester became world famous for its approach to radiotherapy through the use of the 'The Manchester Method' in the 1930s.

In 1969, Tamoxifen was a surprise discovery from work on oral contraceptives by three researchers. It went into clinical trials at The Christie with 46 patients as a targeted therapy. Ten patients showed immediate response and tumour shrinkage. This was the first clinical trial and the first real targeted therapy.

Manchester is also the first UK centre of excellence for prostate cancer research.

There are many new professionals that have been brought together from around the world to work at this new building and they will benefit from having access to one of the world's biggest early phase clinical trials unit across the road at The Christie. Did you know to get a new drug to market costs between $800m - $1300m? That's a staggering amount of money.

The NHS is an amazing community for being able to work with specialist cancer hospitals for clinical trials due to the amount of people that are in the system in the UK. This, we are told, is what is different to other countries around the world that have private healthcare. Many hospitals work in isolation. The NHS helps all patients across the board to get into trials. There are over 2400 patients participating in 400 different trials at The Christie this year.

An amazing story was about using a compound that was patented in Barcelona and two scientists chatting over a beer (cheers again - there seems to be a pattern developing…) helped to speed up the drug's use. This resulted in the drug being able to go into early trial instead of the usual lengthy approval process. This trial was for acute myeloid leukaemia and it has been very successful.

MCRC is able to provide cancer genome sequencing at a cost of £1500 now, instead of the huge amount of money it used to cost. Doctors will have the patient's gene sequence overnight after a sample of their tumour has been analysed.

It is important that MCRC collaborates around the world and fosters collaborations with other hospitals and pharmaceutical companies. There are around 30 new professional people employed working together bringing great minds together from all over the world. The Christie, Cancer Research UK and The University of Manchester are working together as partners, giving strength to cover huge areas in cancer research.

The presentation was extremely interesting and highlighted just what an amazing place Manchester is and the hope for the future of cancer treatment.

I for one was blown away by what Manchester has done and is still doing for the world, in relation to cancer treatments and therapies. Dr Allan Jordan provided a brilliant insight as to what they were doing. Thank you so much for this.

We were treated to a tour around the building and through the labs upstairs at the MCRC. It was very emotional to think that these pristine, white, empty (apart from chairs, tables and microscopes) labs will be a hub of activity soon when scientists and clinicians are moved into them to actually work. Not just that, but we could be standing in the exact lab that they find a cure for cancer in or for a specific cancer or specific treatment for a type of cancer.

At the MCRC they have seating and workspace areas all around for colleagues to work and talk to promote open discussions about what they are doing and a large cafe area for them to sit in and chat. It does seem very much like the 'Apple' of the science world and similar to these new start-up companies that work, chat and socialise together. It's a hugely exciting time for everyone involved.

Regan and Faron at the MCRC

On the following Saturday we returned as a family so my children Regan and Faron could see the building and have an understanding of what goes on in science. They were shown by a scientist how to extract DNA from a strawberry and we still have this in our fridge. I must say that Jeff and the children were completely blown away and it hopefully has fuelled an interest in the children into science. Who knows what the future holds.

If this is the way forward then they must be encouraged to do whatever they need to do to help these amazing minds unlock the secrets of cancer which will bring hope to all cancer patients.

Manchester is an amazing place that I'm hugely proud of and I'm sure that these advances in medicine will continue.

Thank you so much for inviting me to look around and to meet you all, it was an amazing experience and I look forward to hearing about great new discoveries in the near future!

I'm forever hopeful.

Jo runs a website to support primary and secondary breast cancer patients at www.abcdiagnosis.co.uk and can be contacted via Twitter at @abcdiagnosis or followed on Facebook at www.facebook.com/abcdiagnosis

Men living with and beyond prostate cancer can often have a range of medical and psychosocial needs, including the fear of cancer recurrence - Helen Johnson

Helen Johnson - prostate cancer clinical nurse specialist

Helen Johnson

Prostate cancer is the most common male cancer in the UK with over 40,000 new cases per year. The numbers of men are increasing and it has been estimated that by 2030, it will be the most common cancer of all.

Encouragingly, more men are surviving prostate cancer with 84% of prostate cancer patients surviving more than 10 years after treatment. However, this means that men living with and beyond prostate cancer can often have a range of medical and psychosocial needs, including the fear of cancer recurrence. It is therefore really important for us at The Christie to not only support men through the initial treatment phase, but to look with a focus on recovery and getting their lives back on track and preparing them for discharge.

Initial treatment comprises surgery, radiotherapy, hormone therapy or a combination of these. Standard aftercare has always been delivered at the main Christie site in Withington or a combination of appointments at The Christie and local hospitals. As The Christie serves a large catchment area, patients may have to travel long distances which can add cost and time pressures to patients and their families.

Because the numbers of patients are increasing, more outpatient appointments are required to deliver the aftercare which places increasing pressure on already stretched cancer services. If you have ever visited The Christie outpatients department, you will see that it is extremely busy with long waiting times and patients often don't get much time with their doctor to talk about some of the issues they may have after treatment. The Christie team was determined to find new ways to address this.

National guidelines recommend that two years after prostate cancer treatment has been completed, patients' aftercare should be given 'outside of hospital'. At The Christie we feel that a focus on holistic care delivery and local access was essential in this. The Christie therefore worked in partnership with the charity Prostate Cancer UK to undertake a pilot using a prostate cancer clinical nurse specialist working across primary and secondary care to deliver aftercare to prostate cancer patients. I was that lucky nurse!

I initially started by identifying geographical areas in Greater Manchester with high populations and prevalence of prostate cancer. I then identified primary care centres, GP practices or cancer centres in these areas that would be willing to let us have a room there for a nominal charge in which we could see patients. We developed patient information letters and information leaflets and invited men who had completed treatment to attend community based clinics instead of their standard hospital based check-up appointment.

My focus in the clinic appointment is to assess patients physical and emotional needs and offer advice as to how to deal with the consequences of the treatment they have. Patients receive more time per consultation, and broader issues such as lifestyle advice and management of symptoms associated with treatment are addressed along with standard monitoring for recurrence. Fast track referral back to The Christie hospital is available if required

The community service has now been accessed by over 1,000 men, releasing more than 1,600 hospital based appointments. This in turn freed up resources within the main Christie site to focus on supporting patients with more complex needs and new referrals. I have collected information on all of the clinic appointments as well as patient satisfaction surveys. Men identified a number of issues as a consequence of their treatment. 30% had bowel trouble, 34% had water work problems, 48% had sexual problems and12% had emotional issues. These were dealt with in the community clinic or by onward referral to other support agencies. One of the main aims of the clinic is to empower men to be able to self-manage and prepare them for discharge, and so far around 18% of men we see feel confident to manage their own blood tests and symptoms with the support of their GP. All men who attended the clinics rated it 'good' or 'very good' and found that access to the clinics and waiting times were much improved.

I am very proud of this innovative new service in prostate cancer care . We believe that the success of this service to date provides evidence of the effectiveness of this approach and we are now sharing our learning and experience for the benefit of the wider NHS.

If you want to find out more please contact helen.johnson@christie.nhs.uk

I always considered (quite wrongly) that The Christie was a place where you go to die. How wrong I was! It's most definitely a place you go to live - Joan Campion

Joan Campion - Christie patient

Joan Campion

It's difficult to put into words exactly how you feel when someone tells you that you have cancer and I won't even begin to try to explain it - it's awful. Suffice to say that it resonates throughout your whole family and friends.

After my diagnosis with melanoma, things began to happen quite quickly. I was referred to The Christie and there began a journey which I shall always remember.

During my 71 years, I have been an inpatient in at least four or five different hospitals, but have never met staff with so much empathy before. From the consultant right through to Debbie, the dressings nurse, they were all considerate, supportive and warm-hearted. Importantly too, they answered my many questions intelligently and honestly.

I had my operation early in December 2014 and then had a traumatic wait for the results of the biopsy. I hoped to get the results before Christmas and thanks to the kindness of one of the nurses, I got a call from the specialist nurse practitioner just before Christmas with my results. The cancer hadn't spread and that was the most wonderful Christmas present I've ever had!

My joy was short lived however, because only days later my partner was diagnosed with metastatic prostate cancer, which unfortunately won't have the same positive outcome that I've had. But he's very philosophical and dealing with it with courage and positivity. I've been with him throughout his treatment and he has experienced the same warm support from all The Christie staff as I did.

It really does keep your spirits up when you're greeted with a smile and a cheerful disposition, when you can sit down with qualified staff and ask really difficult questions, sure in the knowledge that you will always receive truthful responses.

Before these experiences, I always considered (quite wrongly) that The Christie was a place where you go to die. How wrong I was! It's most definitely a place you go to live. I, and I imagine many other patients, can't sing its praises too highly. It's a remarkable hospital with remarkable staff!

I was surprised how everyone I asked from ticket collectors to taxi drivers spoke about The Christie with a sense of pride and gratitude - Omer Aziz

Omer Aziz - consultant colorectal and laparoscopic surgeon at The Christie

Omer Aziz

Just over a year ago, I made the decision to leave London, a city where I had lived for 26 years, and move to Manchester with my family. This came about because of the opportunity to join the Colorectal and Peritoneal Oncology Centre at The Christie as a consultant colorectal surgeon. 

It was the kind of career move you can't plan for, largely because there isn't a job like this anywhere else in the country, and perhaps only a handful of jobs like it in the world.

I remember my first trip here from London, where I was surprised how everyone I asked from ticket collectors to taxi drivers spoke about The Christie with a sense of pride and gratitude. It was endearing to see how this institution has touched so many lives. 

The next thing that would come up in my conversations about Manchester was football, with people passionate about either the 'red' of United or 'blue' of City. Being a Liverpool fan meant I had to try to avoid getting drawn into that discussion!

At The Christie I have joined a team offering highly specialised cancer surgery, performing procedures such as Cytoreductive Surgery (CRS) with Hyperthermic Intraperitoneal Chemotherapy (HIPEC) and advanced keyhole operations for cancer. CRS involves removing all visible tumours and is most commonly performed in cases of Pseudomyxoma Peritoneii (PMP), appendix cancers or colorectal cancers that have spread to the lining of the abdomen (peritoneum).  Once the tumours are removed, HIPEC is then inserted into the abdomen and circulated for about 90 minutes. This is a highly concentrated, heated chemotherapy treatment that unlike systemic chemotherapy (which circulates throughout the body), delivers chemotherapy directly to cancer cells in the abdomen. The solution is then drained from the abdomen and the incision is closed. The Christie is one of only two UK hospitals commissioned to do this type of surgery.

We work closely with plastic surgeons, urologists, and gynaecologists all specialising in cancer, which means we can perform complex cancer surgery involving multiple organs routinely. Through our radiology colleagues we have access to scanning resources and interventions that mean we can offer high quality opinions to our patients and second opinions to clinicians seeking our expertise.

But it is the simple attention to detail, teamwork, and treating patients with compassion that I think makes this the best hospital for cancer treatment that I have worked in. Visiting times are flexible on wards such as the critical care unit, which is so important to patients and their families. Once referred to The Christie colorectal and peritoneal service, patients are assigned a clinical nurse specialist and given a contact number to call if they have any questions and run into any problems. These nurses are experienced and offer reassurance as well as picking up any warning signs of potential problems. Today, a patient attended my clinic and told me that the thing she appreciated the most throughout her care here, was that her husband was called right after her operation was completed, to let him know she was ok. I have rarely seen this happen in other hospitals, yet it has been a standard practice amongst colorectal surgeons here.  While there are many ways we can improve, we have a strong platform on which to build - as long as our patients remain at the centre of what we do.

There was a really positive attitude amongst staff and patients and a real sense of pride to work at The Christie - Wesley Doherty

Wesley Doherty - Christie Radiographer

Wesley Doherty

I got into radiotherapy a bit later than most. I've always worked in healthcare and fancied a new challenge. Radiotherapy certainly provided that!

I completed the postgraduate diploma in radiotherapy at the University of Liverpool in 2014, having worked as an optometrist for 15 years. My previous degree allowed me to apply directly to the university for the postgraduate course, but there is also an undergraduate degree programme accessed through UCAS.

I've always liked the combination of the technical physics side of things combined with the biology and pathology from my previous career, and radiotherapy was a natural, if not obvious, progression.

Even though I am accustomed to dealing with difficult and upsetting news for patients and I talk a lot, which comes in very useful as a therapy radiographer, I was a bit worried about working in a cancer hospital. I wrongly assumed it would be a really difficult environment to work in.

I needn't have worried. On walking through the door on the first day I was met with an overwhelmingly friendly atmosphere. There was a really positive attitude amongst staff and patients and a real sense of pride to work at The Christie.

I felt part of the team from the very start. I was supported throughout my training from day one by staff members, mentors and clinical tutors. This support didn't end when I qualified and I was assigned a mentor under The Christie's preceptorship programme for staff new to the trust. This is something I would really have appreciated in my previous career! Since then I have been a mentor myself to two students, one each at undergraduate and postgraduate level.

There is a real emphasis on progression and delivering your best at The Christie. My team is made up of radiographers, senior radiographers, superintendents, specialist and lead grades with opportunities to progress to site-specific roles such as colorectal, breast, paediatric and prostate specialist radiographers.

Since qualifying last year I have spent time in pretreat, treatment prep and treatment delivery. There are regular professional development events to keep up to date in a rapidly developing and highly technical field. With the recent groundwork beginning on the upcoming high energy proton beam therapy centre (one of only 2 NHS facilities in the country) this opens a completely new avenue of opportunities to pursue in the future.

In the past year, I have been encouraged to get involved in helping to shape the culture of The Christie. In my role as a Christie commitment champion, I am part of a team of staff from across the whole organisation who attend meetings in London aimed at transforming the culture of The Christie and the NHS. I hope to continue progressing by applying for funding for my master's degree in the next couple of years.

Working with cancer patients is a privileged position. Every day is different. Every day is rewarding. Every day is filled with new thank you cards and a never ending supply of chocolates, cakes and other goodies. Every day I get to know the wonderful patients I see better and better. Every day I smile more than I have done in any other job, and every day I feel like I am doing something to make a big difference to the patients.

Have you thought about a career as a therapy radiographer working in radiotherapy?  If you are interested in finding out more details, please email RTEducation@christie.nhs.uk