What a patient fears and needs

I have spent the last 10 years living this subject personally as it was about that time when I had my first brush with the fear and the needs of a cancer diagnosis.

So I’m going to write about this subject in relation to being a cancer patient and, in particular, a bladder cancer patient, as well as from my role as founder and director of the charity Fight Bladder Cancer where we have supported thousands of patients and carers over the last seven-plus years and listened to their stories.

Let’s start with FEARS. That moment you hear the word cancer, you go cold, your brain stops working and time stops completely. Things just hang there. The word cannot be taken back. Your life with cancer has begun and it will never end. Never.

We run a Confidential Forum at Fight Bladder Cancer that, at any one time, has close to 3,000 members at different stages of their bladder cancer journey. It is a place where they can be honest in all its brutality. You don’t have to worry about upsetting your family. You don’t have to worry about asking a question and thinking that you must be stupid not to know something. You can ask the questions you are afraid to ask your doctor. You can explain the reality of the disease and the treatment is really affecting you. After all, we don’t want to worry our doctors or our families.

So if you are wondering about what fears, anxiety or panic your patients are having, here is a brief snapshot in no particular order:

Anger, “why me?”, pain, passing it on to children, having to tell family/friends, tiredness, cancer growing whilst waiting for tests, death, treatment and results, hair loss, operations, diet problems, diet worries, hospital stays, taking drugs, complications, side effects, job loss, pain control, sickness, time taken for recovery, financial problems, cost of treatment, travel and parking costs, emotional problems, sadness, depression, relationship problems, sex, recurrence, spread, mets, it getting worse, the unknown, treatment failure, drug shortages, treatment being stopped, becoming terminal. And death.

These fears occur at different times, to a greater or lesser extent, for the rest of your life. For some, these fears never go away. As it was shown in a study from Georgia Regents University in March 2015, when compared with the general population, overall suicide risk was 2.7 times higher for bladder cancer patients, rates were 1.86 times higher in kidney cancer patients, 1.27 times higher in prostate cancer and 1.23 times higher in testicular cancer.

An “All Clear” or a “NED” is great to hear, but we all fear the high recurrence rate so we know we have only a temporary reprieve before the next round of tests and the subsequent wait to hear the results. We know this is forever.

So why do we have so much fear, anxiety and panic in our lives?

As patients and carers we have a simplistic and limited knowledge about our condition. A knowledge that starts from the global fear of the word “cancer” that is fueled every day with media stories, some heartwarming, some desperately sad. But we all know the fundamental mantra that exists out there these days that one in two of us will get cancer at some point in our lives. Patients then go in two different ways. We either start researching madly for every last scrap of information we can find about the cancer or we decide that we just don’t want to
know- what will be, will be. Both reactions are understandable but neither are particularly healthy.

Dr. Google is a very careless physician. He tells you everything and nothing. Should you believe everything or should you believe nothing you read? Which are the correct facts and which are not? When you get five minutes just type “cancer cure” into

Google and see what comes up. When doing this, try and read without your professional head on. As newly diagnosed patients we have no idea what is right or wrong, what is a good source of information and what isn’t.

If we are brave, we might then start to tell our family and friends. This then unleashes a cavalcade of advice based on anecdotes. Advice from how you need to start eating certain herbs and spices, stop drinking coffee, keep well away from sugar, don’t worry “its not a cancer you die from”, chemotherapy is worse than the cancer through to “there is a cure you know, its just that big pharma can’t make money out of it so that’s why they won’t let you have it”.

Then there are the friends who simply disappear. Then there are the spouses that disappear soon after a cancer diagnosis. Then there are your friends and families who really do mean well but just don’t understand and unfortunately make you feel worse, more afraid, more alone. Hidden away, there is also domestic abuse and violence. Happily this is quite rare but, as professionals, you do need to know that this happens following a cancer diagnosis. The fear and the anger can come out in bad ways.

Hopefully, as you have read the first part of this article, you have been thinking “Yes, I know that. We do that to help that. Yes, we understand and we have protocols in place to help.”

Good. All sorted then.

Yes, we see some fantastic exemplars of good practice out there in helping patients with their fears but being honest, there is a really wide variation in quality. I’m not talking about the treatments themselves as I know that, as a profession, you will always strive to improve outcomes.

Patient’s needs
Let’s move on to the patient needs. From over the years of hearing patients talk honestly about their needs, we can get a snapshot of the most commonly defined needs. Again in no particular order: Information, understanding, knowing what to ask, explanations “that I can understand”, support, counseling, signposting where to get support, signposting where to get good information, being provided with a patient “buddy”, getting results quickly, getting treatment quickly, better guidance on side effects, explanations for any delays in results or treatments, being able to contact my medical team whenever I need help/reassurance.

One word sums this all up. Communication.

Good and speedy communication of what you know will provide most of these patient needs. Indeed, at Fight Bladder Cancer, we have a campaign for a new Quality Standard for Communication to be developed. At times you are all brilliant at this. We know because the patients tell us. But at too many times it is easy to fall below the quality that you can achieve because of the pressures of the real world.

But for us patients, this communication is as important as the quality of our treatment. In fact, probably more important. We know that treatment doesn’t bring a guarantee of success. When the detail of treatments, side effects and prognosis is explained to us at diagnosis and during treatment, we understand that you are explaining what the evidence-based research says. We’d love you to be 100% sure of it all but we know you can’t. But we do need to understand and we need your help to ensure that we do understand and that we are not suffering in silence. We can be scared of talking to you, scared of asking you to repeat something because we didn’t understand what you just said. We will think of that question that is really important to us a 2 a.m. when we can’t sleep.

Diagnosis, treatment and aftercare is a team game. If you are the captain of that team, make sure that the whole team understands the patient fears and needs. Put protocols in place to ensure that your practices are robust for the benefit of your patients and their carers. Make sure you measure how good you are in your measures to support the patient fears and needs. Talk to you patients about Quality of Life issues at every encounter. Work with patient advocacy groups like Fight Bladder Cancer to ensure that you hear the reality of the patient experience. Offer to help your nearest patient advocacy group.

The Waiting Room
As bladder cancer patients we spend a good deal of our lives in what we call “the waiting room”. This isn’t just the physical room at the hospital or at the doctor’s office. This is the psychological waiting room. Waiting for an appointment, waiting for results, waiting for the results to be explained, waiting to know what treatment we are going to need, waiting to see the new specialist, waiting for the treatment to start, waiting for the next phase of the treatment, waiting for the next check-up, waiting for the results of the check-up. Waiting for the letter, waiting for that phone call. Waiting to hear if it has come back. Waiting.

Waiting too long to hear what you fear makes it worse. If you take anything from this article, remember to tell your patient what they need or want to hear as soon as possible. Take it from me, that extra day’s wait is hell. Sheer hell.

Finally, don’t be scared of talking honestly with us patients, it will help us talk honestly with you and together we will get this right.

Friday 24 March
12.40-12.50: Special Session Patient Information, EAU Patient Information Project: Setting standards in cooperation and care

Author:
Andrew Winterbottom, Founder and Director Fight Bladder Cancer, UK Charity and Patient Advocacy Group, Chinnor (GB)