Head and neck cancer is a life-changing disease affecting all aspects in the life of a patient; eating, swallowing, talking, and socializing become very hard to deal with and comprehensive support is essential, regardless of the person’s gender, age, social status, or background.
The aim of this article is to describe the journey of a patient from a clinical and personal perspective, while discussing the importance of timely access to the most appropriate treatment based on outcome and on the patient’s quality of life.
The journey of a head and neck cancer patient is illustrated from his own perspective. The clinical case also highlights a few key issues on medicine access. First, it has been a long time since any new treatment or drugs have been available to treat head and neck cancer patients, although the scenario might change drastically due to the introduction of immunotherapy. Second, it is unusual that even the most caring health care professional would consider a treatment that is not licensed in their country, even if it would have made a significantly positive difference to the patient’s quality of life.
The increasing patient and health care professional’s awareness of a solution to their problem with the use of unlicensed treatment, and the decreasing burden linked to identifying and sourcing unlicensed treatment, should help to optimize the management of these patients and significantly impact the outcome and their quality of life.
Med Access @ point care 2017; 1(1): e72 - e75
Article Type: PATIENTS @ POINT OF CARE
- • Accepted on 28/07/2017
- • Available online on 21/08/2017
- • Published online on 22/08/2017
This article is available as full text PDF.
Head and neck cancer is a life-changing disease (1), affecting all aspects in the life of a patient; eating, swallowing, talking, and socializing all becomes very hard to deal with and comprehensive support is essential to being able to get through it, regardless of the person’s gender, age, social status, or background.
Information about the most effective and safe medicines, and other forms of treatment are critical to the patient and his/her family. Although “Doctor Google” now allows patients to be easily informed on all aspects of their disease, it is very difficult to be sure that the information is correct and reliable (2). Often, when they are looking at these uncontrolled information outlets, the patient tends to prioritize and believe in the most reassuring source; that is, the one that suggests the least invasive treatment, and this can, indeed, be catastrophic.
Thus, the cancer patient today remains reliant on the health professionals having access to the most current information and the most appropriate diagnostic and treatment tools available.
As a head and neck cancer survivor, the aim of this article is to describe my journey as a patient (3); illustrate the rollercoaster ride that this condition implies from a clinical and personal perspective; and highlight the difference that access to the best available medicine would have made to my quality of life.
I hope to convey a few key messages that may help other patients to better cope with this life-changing disease, and focus the attention of clinicians, hospital pharmacists, and regulators on issues that are sometimes neglected within the scientific and health care community.
The beginning of a patient’s journey
In May 2011, I had recently remarried and was settling down to a nice life with everything to look forward to. I was working in sales and marketing management and really enjoying my life. My two step-children and two children from my previous marriage filled my life and were keeping me grounded. My dreams were to build to a happy retirement and enjoy life to the full.
How three little words can change your life: “
A head and neck cancer patient journey.
The following week started with an appointment with my Oncologist to explain my treatment plan, followed by an appointment at the Rosemere Cancer Centre for a Mask Planning session. I lay on a cold bed, naked from the waist up, was measured and tattooed, then a hot piece of plastic was put on my face and neck. The nurse meticulously molded the plastic to the shape of my face and neck; my mask was born.
As I understand it, my treatment plan was standard. It included radiotherapy, chemotherapy, a feeding peg, and two-neck discretion, plus lots of recovery. I lost 12 stone in weight, which resulted in a massive body change.
Radiotherapy was not an issue until suddenly I woke up one morning and my neck was burning and had gone black. The skin was peeling off and had blisters and ulcers. I was in so much pain. The weekly chemotherapy was not great, and feeling sick while strapped to the radiotherapy bed was not pleasant (
The patient during preparation of one of the radiotherapy treatments.
Fortunately, I had the feeding peg, and I could still get food and fluid down me to survive. At the end of the radiotherapy and chemotherapy cycles, I went back for the results. There was good news and bad news: the treatment has shrunk the main tumor but the secondary tumors would need two major operations (neck dissection) to remove them. Then, it was all about recovery and lots of rest, plus feeding by the peg for months to come.
If you take food away from someone, you start to realize the social importance of food and drink. I fed on my own while the family was out during the day, and at night while they slept. Sitting at the dining table with family, and going to restaurants and bars with my friends, stopped! So, I forgot how to have a conversation; I had nothing to talk about. Feeding on my peg was purely to keep me alive.
During my recovery, I was diagnosed with depression. At various stages I would be in my car looking at the wall, thinking, “it will be better for the family if I end it now.” Then a picture of my wife and the children would come into my head and I would go back home.
Sharon, my wife, called this period of my treatment “my cancer bubble.” It was all about me, and all I could do was think about me; I never cared about anything or anyone. To help me get over the depression, she suggested I got involved in a patient support group and talk to others who had been where I was; maybe they could help (
The meeting was like going to a combination of a knitting club and an AA meeting; this was not for me. But then, the idea was put forward to use my management and marketing skills to help develop the group. That turned out to be a good idea.
Swallowing difficulties, xerostomia, and access to the best possible treatment
Dysphagia affects 50%-60% of head and neck cancer survivors’ swallowing and the functions related to it, which is a major concern of head and neck cancer patients up to 1 year after treatment is completed (4).
Swallowing difficulties are also common during and after treatment because of the effects of radiotherapy and chemotherapy (
Dry mouth (xerostomia), on the other hand, is the worst side effect that you learn to live with. My mouth is permanently dry. As such, I don’t enjoy food anymore; plus, when I look at food it is like looking at cardboard and I now treat food as a medicine. Everything I eat is accompanied by water. This takes the taste away, but helps with the swallowing.
It was only when the patient support group was asked to share their journeys that I became aware of a treatment that could have prevented xerostomia (5). At the time of my treatment, this life-changing side effect was not a priority, but to hear that the quality of life I was now experiencing could have been better really upset and annoyed me. Why wasn’t I made aware of this treatment? Patients in the USA had access to it, so why didn’t I? Did I really get the very best treatment?
I truly believe we have a great and wonderful national health service in the UK. All the health professionals I have met on my journey really care and believe in the ethos of “Patient First.” However, Patient First sometimes has to deal with the financial, regulatory, and time constraints, and the patient will not always get the very best access to the latest treatment and drugs that could be available to them.
So, did I get the very best? The answer – being honest – would be “maybe not!” Yes, curing my cancer was the priority, and I am thankful that I am alive. When you’re faced with going ahead with treatment, despite the side effects, the choice is obvious. Although the side effects were explained, I had no idea how much they would impact my quality of life, nor was I made aware of the availability of treatment to prevent or lessen them (
There are, in fact, many clinical situations when the use of unlicensed medicines or the use of medicines outside the terms of the license (i.e., “off-label”) may be judged by the prescriber/health care professional to be in the best interest of the patient on the basis of available evidence. Such practice is particularly common in certain areas of medicine: for instance, in pediatrics, where difficulties in the development of age-appropriate formulations mean that many medicines used in children are used off-label, or are unlicensed.
Health care professionals may regard it necessary to prescribe or advise on the use of an unlicensed medicine (e.g., through the so-called “specials” regime when no suitable licensed alternative is available, or when a medicine is prepared in a pharmacy by, or under the supervision of, a pharmacist), or the use of a licensed medicine outside the terms defined by the license (e.g., outside defined indications, doses, routes of administration, or contrary to listed warnings).
Unlicensed medicines can be prescribed by doctors, dentists, independent nurses, and pharmacist prescribers, and – in some circumstances – supplementary prescribers (who can be a pharmacist, nurse, midwife, community nurse, optometrist, physiotherapist, radiographer, or chiropodist/podiatrist). Of course, they are subject to their individual clinical competence, the professional codes and ethics of their statutory bodies, and the prescribing policies of their employers.
Prescribers should balance the benefits with the risks associated with using unlicensed medicines, or using a licensed medicine off-label, including product quality or discrepant product information or labelling.
Saying all of the above, there is no doubt that that health care professionals should always consider all types of treatment (and be prepared to listen to the patient who actually may bring useful information to the treatment discussion), which should include the use of medicines that are “off-label.” This certainly should be considered in the context of the patient’s quality of life going forward posttreatment, as clearly it could make a significant difference to the patient’s future well-being.
The (in my case) happy ending and the journey continues
During 2012, soon after I started to attend the support group on a regular basis, I was engrossed in it and started to accept what had happened to me. In a strange way, by helping others it had helped me. I developed the group to acquire full charity status by November 2012. It is now called The Swallows Charity.
On August 1, 2016, I decided to take on a new challenge and became “World Head and Neck Cancer Patient Ambassador.” I listened to patients, carers, and health care professionals from around the world to clearly understand their needs, and to help improve patient outcome by sharing ideas and creating a loud “patients’ voice.”
In the meantime, throughout 2016, we raised £36,000 for the ENT Department at Blackpool Victoria Hospital to purchase a scanner to help with early diagnoses. We also funded another £20,000 in medical equipment for various hospitals.
On Friday April 7, 2017, I attended my review appointment at Blackpool Hospital Oncology and was fully discharged by my Oncologist surgeon, the wonderful Mr. Nigam. I now class myself as a head and neck cancer survivor.
On June 2, 2017, the Swallows Charity received the highest award that the Queen can give: the MBE (Member of the Most Excellent Order of the British Empire) for Charity … Voluntary Group [
Remembering my family is the most important element and the reason I am here today. Without their support and understanding I would not have survived through the last 6 years.
My dream is now to help tomorrow’s patient and ensure his/her journey is better than today’s – remembering that 1% improvement will be 100% improvement to someone else.
The take home message
I want to share three important points. First, it has been a long time since any new treatment or drugs have been available for head and neck cancer patients, and, until very recently, this has been acceptable. However, this is now changing with the introduction of immunotherapy (6).
Second, I am fully aware that I have received the state-of-the-art treatment, which was available in the UK, and the best possible support from all the people who have dealt with me during this journey. At the same time, I also know that my xerostomia would have been significantly better managed if a treatment that is available in the USA also had been available in the UK, or could have been sourced as an unlicensed treatment. It is something I was not aware of and should have been made aware of. It is very important that treating physicians know that this is a real possibility and that it is very important to the patient.
I believe that every patient has the right to the best possible medicine, in every aspect of their treatment, and regardless of where they are in the world. Patients have the right to be fully informed and educated with clarity around the possible extent of side effects. Medicine must be inspired by science, but driven by patient need.
And, last but not least, cancer is a long and hard journey, but you don’t have to walk the road alone. You will meet many good people who are there to help and guide you on the road. They will find you when you least expect it.