My own control group.

A dear friend - one of my angels - found the courage to ask me a question today that had been on their mind ever since I told them about my diagnosis. I'm going to paraphrase the conversation;

Them: "Does it bother you, knowing that you might still have a tumour inside you?"

Me: "Yes. A lot. That's the main reason I am having surgery."

Okay, it's not exactly the height of conversation but it took a lot of courage on the part of my friend to overcome their concerns surrounding an upsetting topic for both of us. But it's still a very important question and it all boils down to the word might in their question. That I might still have a tumour inside me.

Might. One side of a coin with might not on the other side. 

It may seem self evident that I have a greater concern about the possibility of still having remnants of a tumour inside me than I am about the major surgery I am facing. I mean, if I wasn't concerned about this possibility, why would I go through with the pain and recovery of a major operation? That would be madness. But what real reasons do I have to hang my hat of concern on?

"Ah - statistics!" you may say. And that's a perfectly reasonable answer. It's wrong, but it's perfectly reasonable. I work with medical statistics every day at work. A huge part of my professional life involves critically evaluating scientific studies and gleaning the statistics from them to determine is a given therapy is more likely to offer benefit than risk.

A randomized, placebo controlled, double-blind study with large numbers of patients is the best type of evidence that a given therapy is beneficial. Let's unpack the four parts of this statement;

• Randomized means that subjects will be assigned to treatment and control groups in equal numbers and in equal distributions of age, gender, and other factors (unless there is some clear reason to focus on a specific gender, like focusing on women in pregnancy-induced vomiting and nausea for example).
• Placebo controlled means that roughly equal numbers or subjects will receive the therapy or will receive no active treatment at all. (Fun fact: 'placebo' comes from the Latin verb meaning I shall please'. In early medicine, placebos were given to patients to please them, not to treat their illness)
• Double blind means that the investigators - the smart people doing the study - and the subjects are both unaware of whether any given subject is receiving the treatment or placebo. This can be challenging in some cases like surgery, but there are methods to offer blinding even then. 
• Large Numbers means... you don't really need me to explain this, do you? You need to repeat any experiment enough times to be certain that the outcome wasn't just a random occurrence. In medical studies, these numbers are often in the thousands or tens of thousands. 

So let me throw some statistics at you relating to my cancer and planned surgery;

• There is only one chance in five that pathology will find any residual tumour in the tissue removed by my surgeon. Putting this another way, there is an 80% chance that he will remove a perfectly healthy and functional organ.
• If I have surgery, there is a one in twenty chance that the lymph nodes removed will have cancerous cells in them.
• If there are cancerous cells in my lymph nodes, there is an 80% chance that I will develop cancer elsewhere in my colon or body within 10 years. 
• Chemotherapy will reduce the risk of my cancer spreading if it is found in my lymph nodes to roughly 5% in 10 years.
• If all of these things come to pass and I do go on chemotherapy, there is a 50% to 65% chance that it will make me throw up.

I have not fact-checked these statistics; most of them come from my surgeon and a few of them come from reference resources I have available or good old Dr. Google. It's important to realize however that whether these statistics are accurate - whether the likelihood of there being residual tumour in my rectum is one in five or one in two or one in a thousand, for example - because they are statistics. They only really have meaning in the context of a large group of people; that's why medical studies look at thousands or tens of thousands of subjects to find benefits that might not just happen by random chance.

Statistics have no meaning when applied to an individual. 

I either do or do not have residual tumours in my rectum. That means my probability is either 100% or 0%, not 0.1% or 20% or 50%. I can't half have residual tumour. Likewise my lymph nodes either will or will not have cancerous cells in them. If I take chemotherapy I either will or will not experience nausea and vomiting.

I am me. I am an individual. And whatever the numbers say about someone like me with a similar tumour type and location, they cannot say with certainty what part of the spectrum I will fall into.

I have a choice. Either I undergo surgery or I do not. If I do, there are some things that are certain; I will have to recuperate, I will have some degree of postoperative pain, I will have to slowly reintroduce solid foods as my GI tract heals, and if I throw up every day for six months, my quality of life will be really, really low. There are some things that are highly likely; I will probably have a shocking number of tubes coming out of my body for a few days after surgery, I am likely to have a blood clot unless I inject myself with blood thinners for up to a month after surgery, and I will be in the hospital for at least five days after surgery. After that everything gets into the realm of "maybe" with rapidly dwindling likelihoods. But in every single case, no matter what parameter you want to think about, I can't both experience and not experience the outcome.

If I do not undergo surgery, there is a chance that I will live a long and healthy life with no recurrence of my colorectal cancer. I will avoid the possibility of any of the adverse outcomes and complications that go with major surgery. There is a much, much greater chance that my cancer will return and with a vengeance, but once again I can't know whether it will or it won't. And I can't both undergo surgery and not undergo surgery to determine which one has better outcomes for me. 

I cannot be my own control group.

The consideration of whether to undergo surgery really becomes a matter of faith. 

Do I have faith in my surgeon and what he is telling me?  Yes. Yes, I most definitely do.

Do I have faith in the team of professionals - the nurses and physiotherapists and pharmacists and doctors and dieticians - who will provide my operative and postoperative care? Again - yes, I definitely do.

Do I believe that there is a residual of tumour left in my rectum?

Do I?

Yes. And that thought scares me. 

Do I believe that the major surgery I am facing will save my life and leave me with a high quality of life afterwards? Yes. I believe that also.

But I can't be certain, and that's why I have to have faith despite the statistics. 

My friend was brave and asked me a question that was as important to them as it is to me. I don't know whether everyone facing a diagnosis like mine would think of their treatment options in terms of faith; maybe some would consider the statistics alone and take comfort in knowing that the smart money would be on the option that they choose. A few might even simply give up their decision to their surgeon; after all, the surgeon knows a lot more about their cancer than they do, right?

Those are just different ways of experiencing faith in my opinion - faith in numbers, faith in an individual, faith in positive outcomes. And right now, faith can bring me a lot of comfort.

I know that I have to make a single choice, that I can't both have and not have my surgery. Without any control, I can be one element of a statistic, but I can't be all statistics. I have to trust in the choice I make and look it straight in the eye. What's right for me might not be what's right for everyone, but it's my choice to make.

So... the next time you feel like it might help to quote statistics or use them to evaluate whether a choice you are facing would be better made in one way or another, stop for a moment and remember that while those numbers might be a good guide, you ultimately need to be okay with the choice you make. And being okay with your choice is a lot more about trust or faith than it is about mathematics.