J is for… Jumping the Gun – “Scanxiety”

20 Nov

Fear of cancer returning

OMG! THE FEAR that follows a cancer diagnosis!! The problem is that (contrary to popular opinion) we can never be given the “all clear” and have to be happy with being “NED” (No Evidence of Disease). The new challenge following treatment is managing this knowledge and being vigilant but without panicking that every lump and bump, ache and pain is the cancer having spread. Naively I thought that treatment would be the worst bit of a cancer diagnosis and that I would never, ever feel as worried or as scared as when I was given my primary diagnosis. However, that was before I’d had to deal with “the fear” and “scanxiety” of various symptoms that I have suffered since treatment has finished. It is all too easy to jump the gun and diagnose yourself with a whole heap of nasties.

protective bubble

During treatment you feel like you are in a little protective bubble as you will have constant hospital appointments with specialists and nurses who keep a close eye on you, constant blood tests, maybe scans too, and your veins are being pumped full of all sorts of amazing toxic chemicals which gush around your body, zapping those pesky cancer cells. Once you’ve finished treatment, the protective bubble bursts, you rarely see your consultants and you are either off to fend by yourself or, if your cancer is receptive to oestrogen, you are provided with what looks like a harmless-looking little white pill to take daily (but is much more cancer-butt-kicking than it seems – see T is for… Tamoxifen). Then “the fear” can set in. The fear of it coming back and the fear of every abnormal symptom being indicative of the cancer spreading.

waiting room

It is now far too easy to jump to the conclusion that any lump, bump, ache, pain, bruise or cough is due to cancer – and when your consultant sends you off for a scan to “check it out” it just compounds the fear and makes it feel that it is more likely to be something sinister, sending panic levels stratospheric. And don’t even get me started on waiting for the test results. Being back in the waiting room sucks at the best of times – let alone when you’re waiting to see if you’ve been upgraded to a terminal diagnosis. Words can’t even describe the fear mounting in you by the second. Luckily my oncologist is very sensitive to this and rarely keeps me waiting. For the results of my last MRI he blurted “your scan was clear” as soon as we walked into the room at which point Mr B promptly burst into tears with relief and collapsed.

bad back

The problem is that treatment itself causes side effects, so it is not uncommon to have a number of symptoms following treatment that didn’t exist before. This can range from scar tissue which feels like another lump to osteoporosis caused by lack of oestrogen, which can mimic secondary bone cancer. Luckily <touches wood> my symptoms have so far been attributed to various treatments and ongoing medication. After radiotherapy I developed some little mole-type marks around my scar. Obviously I googled it and diagnosed myself with skin mets. Cue major meltdown. I booked an urgent appointment with my oncologist who reassured me it was just skin damage caused by radiotherapy. I then had a cough for 4 months. After numerous tests my heart medication was changed and voila! I was cured. I then had a bad knee which I mentioned to my oncologist who sent me for an immediate x-ray. All clear. I then developed an incredibly bad back with pain radiating through my hips, making it painful to walk, lie down or sit. The spine tends to be a favoured route for breast cancer to spread. One lengthy MRI scan and terrifying wait for results showed nothing sinister – and after a few physio and acupuncture sessions the pain was eased – although it still niggles at me daily. My physiotherapist explained how my back had been affected by my surgery choice and the muscles weakened by chemo. What else…? Oh, my chemobrain symptoms of  fogginess, lack of concentration, memory and confusion coupled with headaches and my newly developed double vision led me immediately down the brain mets route. However, turns out it is just chemobrain (I say “just” but it sucks! BIG time. See I is for… I’ve finished but I still feel rubbish…) and my eyesight being affected by the chemo and Tamoxifen, which was then giving me headaches as I was straining to see.

The fear

Unfortunately I don’t have the answer how to deal with “THE FEAR”. I wish I did! If anyone else can offer advice, I’d love to hear it. All I can say is that it is normal – everyone I have met has had the same worries and fears on varying scales – and it does get easier. How you handle it will be somewhat down to you as a person. I need to be able to talk about it, cry if I want to, and need to keep busy to keep my mind off it. All I know is that the further you get from diagnosis the more you will be able to trust your body again (yes – the same f*cked up body that just tried to kill you) and the less you will think about cancer. It doesn’t seem possible at the beginning, but despite still having regular hospital appointments and continuous side effects from the treatment, cancer is definitely not at the forefront of my mind as it was when I was first diagnosed. It will always be a part of us, but as we adapt to the new “normal”,  it will sink further and further to the back of our minds.


I guess my point is that although we all know that cancer is a crappy, crafty disease and can come back and bite us on the arse at any time, and unfortunately have too many upsetting reminders that this is the case, we need to be vigilant, but sensible with it. Take deep breaths and think sensibly. One girl I met had a complete meltdown when she got a cough. Having spoken to her, I found out that her whole family had colds – and coughs – but such was THE FEAR that she wasn’t thinking straight and hadn’t done the obvious thing of putting her cough down to a bug that had affected her nearest and dearest too – but down to cancer! Another friend was panicking that she was losing weight. Unexplained weight loss can be indicative of secondary cancer. However, she’d been doing Weight Watchers religiously! Think that might just explain the weight loss! Just don’t panic straightaway, especially if there is a logical reason for your symptom. Before you were diagnosed you will have had bumps and lumps and aches and pains and it wouldn’t even have crossed your mind that it was sinister! You need to remember that – and you need to remember that it most likely ISN’T RELATED TO CANCER.

However, it’s easier said than done, I know. I must head off now and try and practice what I preach.

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