Friday, 28 February 2014

The hidden scars of cancer treatment

For many cancer survivors, particularly those that had hematological malignancies, if you were to bump in to them at the beach, you would likely never know what their bodies had been put through. The reason being that often the treatment only involves chemotherapy, radiotherapy and/or stem cell transplants, hence any damage caused in the process is likely well-hidden beneath the skin. For that reason, this post is about the hidden scars that I've acquired on my now five-year journey of cancer treatment.

As it happens, my timing of this post is not ideal, as I need to start by contradicting myself a little. Due to my recent toenail surgery, hickman line replacement, and skin GVHD issues, I do actually have more visible on the surface than usual, so even the least observant amongst you would likely notice something. However, the first two will shortly be not so easy to spot (given sufficient time to heal), and the dry, flaky, red skin caused by the last (should it not be cured) might easily be mistaken for soaking-up too many of the sun's rays. Having said that, if you were to put your detective hat on, and look at me closely, there are a few things that you couldn't dismiss as normal:

  • Scars - There are several very minor scars, which are only just visible upon close inspection, as a result of having a number of bone marrow and skin biopsies, and hickman line insertions and removals.

  • Tattoos - There are a few tiny tattoos, which are simply dots of about one millimetre diameter, that were used in the targeting of the radiotherapy.

  • Missing Toenails - The nails on my big toes are missing, due to them being permanently removed to prevent an infection from reoccurring.

Putting aside the unusual things that you may notice upon close inspection, which as you now know are all pretty minor really, what is left are the things that could easily be overlooked, or are hiding where the eyes can't see. Perhaps surprisingly, it is actually the overlooked and hidden that tend to be much more significant - Even though some are still superficial, they can be emotionally challenging for some cancer survivors. Having had a number of treatments, I have gradually acquired several such things:

  • Hearing Difficulties - One of the chemotherapy drugs that I had during my second-line treatment, namely Cisplatin, damaged my hearing in a couple of ways. The damage consists of Tinnitus (a constant ringing sound) and loss of high frequencies; It is worse in my left ear. Whilst I don't notice it most of the time, as my idea of normal has gradually changed, I do struggle to pick-out voices in busier/noisier environments; Background noises, such as fans humming or numerous distant conversations, have a tendency to drowned-out nearby voices, especially women's voices.

  • Hair Loss - A number of the treatments have caused my hair to fall out, and whilst in the early days it eventually grew back, it is a lot thinner these days, hence being bald (or having really short hair) is about the only style that I can manage now, without giving away that something isn't quite right. Fortunately, I'm used to having short hair, so it doesn't bother me. In fact, I actually wish that it wouldn't grow at all, as it would be easier that way.

  • Scar Tissue - Despite the cancerous masses shrinking substantially as a result of the treatments I've had, there is still a significant amount of scar tissue left behind; It's similar to how if you inflate a balloon, and then let all of the air out, the balloon doesn't go back to its original size and shape. This doesn't pose a problem for myself, in that I can't tell that it's there, but it does complicate the interpretation of any medical imaging, as it can be hard to differentiate innocuous scar tissue from cancerous masses.

  • Weight Changes - The cancer and its treatment has caused my weight to drop overall, but not in a good way. Unfortunately, when your body is going through such a process, it is the lean muscle mass that it burns for its additional requirements. Also, even though you may be given steroids as part of your medications, which can dramatically increase your appetite, the type of steroids you're likely to be given (corticosteroids) don't help, as they often cause a redistribution of body fat to the face and torso, and with long-term use can lead to muscle wasting. (It's anabolic steroids that are used in bodybuilding, i.e. corticosteroids can have the opposite effect.)

  • Infertility - Most of the treatments affect fertility; For some it's likely to be a temporary side effect, but for others it's likely permanent. Whilst I've not actually been tested myself, it seems very unlikely that I will be fertile after all of the treatments that I've had. Fortunately, there are options such as adoption, should I ever want children, hence it is not a big issue for me.

  • Lung Damage - By comparing the results of my first and last lung function tests, you can see that my lungs have suffered from friendly-fire at times, as they don't work as well as they used to do. I'm only likely to notice the damage when my lungs have to work harder though, e.g. when exercising.

  • Peripheral Sensory Neuropathy - The monoclonal antibody-drug conjugate that I had during my third-line treatment, namely Brentuximab Vedotin, damaged the nerves in the extremities of my hands and feet. It's mostly my finger tips where I notice it now, as they often feel numb, tingly and tender. My fingers do tremble slightly at times now too, especially when performing tasks that require any precision or a light touch.

In addition to what has already happened, there is also the question of how the cancer and its treatment will affect the future. This involves considering: medical issues, such as the increased risk of heart, lung and/or thyroid problems, and the potential for the cancer to relapse and/or secondary cancers to develop; practical issues, such as the additional complexities around travel insurance and pensions; emotional issues, such as coping with everything that has happened and how it will affect life going forward; and financial issues, such as loss of earnings and potentially substantial medical expenses. In other words, it can have numerous/wide-reaching repercussions.

Finally wrapping this post up, hopefully the extensive albeit still incomplete description above gives you an appreciation for what I now consider to be my new normal; Hence, if you do ever bump in to me at the beach one day, and ask how I'm doing and say that I look well, you will know why I smile when replying: "I'm fine, thanks. How are you?"


  1. Wow, what honesty. I can see my son in so much you have written and he always says "I'm fine" too. If people only knew what really has gone on they would be in awe of all the transplants warriors.

    Still loving your blog James!


  2. I love your blog, James, Every post is so detailed og packed with useful information. This post was one I could really relate too. There are many scars following cancer treatment. Nice to know others feel the same way:)