• “What is the survival rate?”
• “How long have the doctors given you?”
• “What is the prognosis?”
• “What is the average survival time?”
• “When will I die?”
• “Will treatment beat my cancer?”

There are many ways of asking the same question. And it is a terrifying question. But it is probably one of the first things that goes through most of our minds when we hear the words “leukemia”, “lymphoma”, “myeloma” or “blood cancer”. We all fear Cancer and think of it as a killer. Blood cancer is in fact the third biggest cancer killer in most developed countries. Only lung cancer and bowel cancer kills more people. But there are over 100 types of blood cancer. And even two people with the same cancer will often have a completely different journey. Many today will have much better outcomes than we assume when we first hear the diagnosis.

Googling for survival statistics is likely to be scary. Many blood cancers will have data available on the internet that suggests relatively short survival times. I know many patients who found pages that suggested their cancer had an average life expectancy of five or ten years for example. This can cause a lot of fear and confusion. Here are the reasons why you should never assume the worst from reading survival statistics online

• Average life expectancy is not the same thing as maximum life expectancy. I have met blood cancer patients who were not expected to last more than a few months, but were given a treatment that was new at the time and are still very much alive more than twenty years later.
• Survival statistics are always out of date by definition. So even if a study was completed today, the ten year survival statistics are obviously referring to patients diagnosed at least ten years ago. We don’t want to know how people diagnosed more than ten years ago did, we want to know how we will do.
• Blood cancer treatments have improved dramatically in recent years. Some conditions which had very poor survival just a few years ago now have great new treatments available, and new research is ongoing all the time. By the time you need treatment or current treatments no longer work for you there may be new treatments available.
• Survival data reflects the age and general health of the typical population with that cancer. So if your blood cancer is typically diagnosed in elderly patients, they might not expect to live for very long at all even before they were diagnosed. If you are several decades younger than the typical patient then it may well be the case that you can reasonably hope to live much longer than such reports suggest.
• Even if the data is correct mean survival can be quite misleading. It does NOT mean that everyone should expect to live to the mean or median survival point. In the case of median survival all that means is that 50% of patients will have died by then (as we also mentioned this may well include deaths from other conditions). But it might be the case in some diagnoses that some patients with more aggressive versions are dying early, whilst perhaps in some conditions those who survive for the first year or two are then very unlikely to later die from that cancer.
• Ultimately it does not matter what happens to the average patient. What matters is what will happen to you. Your health situation is unique. You may be very healthy. You might have a much less aggressive version of your blood cancer than average. Or you might have a more aggressive than average version but perhaps it will also respond very well to treatment, giving you a much better outcome than typical. You might be given bad odds, but you may be fortunate enough to beat those odds. Someone close to me was told they only had a 30% chance their blood cancer treatment would work. But work it did, so in the end that statistic didn’t really matter.

A Specialist doctor in your type of blood cancer is the the best person to discuss your specific prognosis

There are two questions to ask:

• “What would happen if we do nothing?
• “what would we be hoping to achieve by treatment?”

But sometimes our fear that we are going to die soon comes from what we think the doctor told us, or what they did not say. Rarely will a doctor give you a clear answer, because the truth is contrary to popular myth they simply do not know. And if they could accurately predict would you really want to know precisely when you would die? What would you do with that information?

Doctors do not typically tell patients how long they think they will live because it is usually impossible to be certain. Unfortunately some of us might misunderstand that silence as being reluctance to tell us the bad news that we do not have long to live.

If you have just come out of your diagnosis appointment it is quite common for people to fear that their life is effectively over and that they will soon die. It is, however, incredibly unusual with any blood cancer, no matter how aggressive, for doctors to offer no hope of treatment at that initial visit. So if you think your doctor has told you that you will shortly die then it is definitely important to double check that information is correct. Sometimes our minds play tricks with us. Or sometimes the way the doctor communicates with us doesn’t work for us and we end up taking home the wrong message.

Miscommunication can happen in different ways. Perhaps your doctor tells you that no treatment is needed. If they also explain that your blood cancer has already spread throughout your blood and lymph nodes, it might be very easy in that state of high emotion to misunderstand. What was intended as good news “Your cancer is not yet bad enough to need treatment and we can afford to watch and wait and I will see you in three months” could so easily be misunderstood as “It’s too late for me, the cancer has spread and there is no treatment able to help me“. Hope is so important and if we somehow misunderstood what a doctor said so fundamentally we would clearly be very distressed.

We have seen how chronic, slow growing cancers can nevertheless bring great fear of death with them and yet people can live with such cancers for decades. On the other hand some blood cancers are acute, aggressive and fast growing. At times doctors will need to lay out the urgency of starting treatment straight away. I have several online friends who when they were told they had such an acute and rapidly growing blood cancer and do not remember being told that there was any hope whatsoever. They did not expect to survive the treatment period, and yet they did. In fact many aggressive blood cancers now respond well to aggressive treatment and in some cases the cure rate is now really high.

Sometimes it’s not so much that we mishear what is actually said as that our emotions do not connect with it. Being told that you have Blood Cancer but no treatment is needed yet is hard to make sense of, and sometimes as a result our minds start to race to all kinds of rare circumstances that might occur which would mean that our doctors prediction would be wrong. Lying in bed at night scenarios play out in our mind and we feel uncertain of the future. We expect our doctors to fix our health problems. When they say they can’t then it can be distressing.

Many people diagnosed today with blood cancer will live a normal life expectancy and die at a ripe old age of something else.

Sometimes there is a miss match in the communication between doctor and patient. The doctor may be trying to be sympathetic and understanding towards the emotional pain you are feeling. But you as the patient might interpret that as communicating a message that things are actually worse than you are being told. Their very kindness might signal to you that they have no hope you will be cured.

On the other extreme some doctors will try and minimise the seriousness of your blood cancer diagnosis. They might say “you have the best type of cancer to have”. Which is kind of like saying you have been robbed and attacked by the best kind of mugger. No matter how chronic and slow growing a blood cancer is, it is still an alien invader threatening you, and damaging your body, and it is entirely understandable to be frightened.

You do not always have to be strong. It is OK to cry. It is OK to feel angry. It is OK not to be positive sometimes. We should not try and fight or suppress our emotions, we need to find a safe place to express them. Yes it is good to learn some facts, and think of ways to encourage ourselves, even correcting negative thoughts. But we must learn to accept our emotions without letting them rule us. There are to very helpful short videos about how to handle difficult emotions in ourselves and others in the article, The Tyranny of the Positive.

When I first heard the word “Leukemia” most of the rest of what was said didn’t register. I do remember the doctor over the phone telling me two conflicting things which raised my alarm level. Firstly that I needed to see her urgently for more tests. And secondly that I needn’t worry too much as she was almost sure that I had a chronic cancer that had been there for years. The urgency of needing to see her quickly didn’t really add up with the comment about the disease being slow growing. And my mind latched onto the fact that I knew I had had normal blood tests just a couple of months before. So I persuaded myself that my blood cancer couldn’t be slow growing at all, and started to really worry about my future. It turned out by the way that those blood tests I had a few months before diagnosis had not included a full blood count which would have been the only routine test you would expect to detect a problem. So my fears that I would quickly succumb to an aggressive form of blood cancer were unfounded. Three and a half years later I am fortunate enough to be in remission.

The reality is that whenever we are given a blood cancer diagnosis we find ourselves face to face with our mortality. There is always a chance, even if that may be only very small in many cases, that we might find our life is shortened by the diagnosis. But the reality is that none of us, even without a diagnosis, can guarantee a long life. We were never promised tomorrow.

We do like to pretend that we will live for ever, or at least a long time. But in that diagnosis conversation with a doctor, the illusion of our immortality is punctured and we suddenly feel vulnerable. It is almost like we are the enlightened ones and the rest of the world are deluded that they are safe.

It is wise to be prepared for the worst. But it is essential to hope for the best.

Sometimes we can feel rather disconnected from our pre-cancer lives and pre-cancer friends and family . And yet the tragedy is that many who feel their life is now over can actually look forward to a long life. Often our fears are exaggerated. How sad it would be to get to say 20 years post diagnosis and look back and realise you had been robbed of the enjoyment of all that time by being trapped in a vice of fear that turned out to be unfounded.

Being given a diagnosis of blood cancer can ultimately change out attitude to life. It may make us more grateful for every day we have been given. It may lead to a greater appreciation for friends and family. Facing the prospect, however unlikely, of your possible death has a tendency to cause us to re-evaluate things. Many people find their relationships become deeper and more satisfying. Sadly the opposite can also be the case and divorce is surprisingly common among cancer survivors. Dealing with the stress and trauma can sometimes prompt us to be introspective and be damaging to relationships, however, perhaps putting unrealistic expectations on our loved ones.

There is no one right way to cope with the shock of receiving a diagnosis. We often go through a process of grief for the healthy life we have lost. But some people seem outwardly to be not so obviously affected. This can be frustrating and cause concern to loved ones. It is remarkable how tempting it for many people to judge those who are handling such news as somehow responding inappropriately. Too sad, not emotional enough. Too negative, overly optimistic. Talking about it too much, or not often enough. Ignoring it, or dwelling on it all the time. Try to give yourself and others space to handle the news the way that feels right for you.

Sometimes there can be a mismatch between those who like to share their emotions outwardly with others and those who do not. Between those who want to face the reality of the situation, find out facts, and prepare for the possible worst outcome and those who want to pretend it hasn’t happened. Some will want to as quickly as possible stop thinking about their cancer and get back to hoping for the best, ignoring the risks altogether and getting on with life.

What one group of people call optimism, the other might call denial. What one group would call being realistic the other might call being overly negative. The approach we take to uncertainty and the challenge of a cancer diagnosis in ourselves or a loved one is probably at least in part hardwired into our personality. It is probably wise not to try and change the fundamental way someone else approaches these things. If you find yourself in such a mismatch, then seeking the help of a professional counsellor and support outside of your normal relationships may be even more crucial.

Before we are hit with a cancer diagnosis we tend to ignore our mortality. We somehow like to imagine that we will live forever or at least to old age, and perhaps one day we hope we will simply fall asleep and not wake up.

Suddenly when we hear that we have a cancer we often assume the worst. Especially if the doctor looks a bit nervous when we ask them for a prognosis. If they don’t answer us clearly we assume it is because they secretly know we will not survive for long. And maybe we don’t want to worry our family so we keep our fear of imminent death secret. I hope by reading this article you know that you are not alone. And when it comes to trying to work out how long you will live Dr Google is not your best friend.

In the next article I will look at some simple things we can do to improve our health, and hopefully lengthen our life expectancy.

I hope that whatever your situation this article has helped you to get to a place of hope, whilst not denying the emotional challenges caused by receiving a diagnosis of blood cancer. If you need more help and support please do reach out to your health team, a counsellor, one of the blood cancer charity telephone helplines, or perhaps an online support group like the one associated with this website.

Learn More

What is Blood Cancer?