Scanxiety : Getting anxious having scans for cancer
I never heard the word scanxiety before I was diagnosed with cancer. I am not even sure if it is a word, but it is something we say a lot in my breast cancer support groups as it is anxiety that scans cause.
Now I have secondary breast cancer you would think that I am used to scans. Yes, I do not throw up before scans anymore as I have them so often, but I do still get very anxious and scared and it keeps me awake for days on end.
I am currently having 3 monthly CT scans to see how the treatment is working. As soon as the letter with the CT scan dates drops on the mat, I start getting anxious. As the date gets closers it pops in my head more and more. It is like I rule my life around the scan at the moment I cannot go travelling or even think about booking a trip until I know this beast is not growing.
I was doing so well on Herceptin treatment and had a few good scan results and them bam it was growing again so I had to change to a new chemo in October last year called Kadcyla and its not a nice one I am really suffering with it so it better be doing its job.
My oncologist is lovely and keeps telling me not to worry if this treatment stops we have a few more options but that’s easy for him to say. I don’t want the treatment to stop working as each new treatment I start is crossing one of the list and limiting my time.
I know deep down that stressing over scan results is not going to change the results and I try to say this to my self but it doesnt always sink in. My oncologist always says to be to stay positive as positive thinking is far healthier but that is easier said than done.
So firstly I get anxious for the scan which I don’t know why I do as they don’t tell you anything there and then I have it in my head they are going to see such a large tumour they will call an emergency specialist down and keep me in hospital I don’t even think this happens but I think it every time I have a scan.
What happens during a CT scan
I have to arrive at the clinic 1 hour before the scan is due to drink some contract which will react to some chemical that is injected into my vein when I am in the scan machine and it will die anything sinister making it show clearer on the scan image. This doesn’t really taste of anything as they put it in orange or lemon squash, but I get anxious sitting there for an hour seeing people coming and going into the scanning room.
I then get called in the scanning room and a canula is fitted, this again causes me anxiety as I have rubbish vein so this can hurt, and I think they are never going to find a decent vein. I have a port fitted that the chemo unit can access but CT staff are not trained to use it. I wish they were as this would improve the patient experience so much.
The scan itself is not that bad. I lie on the bed go through a loop which is like a big polo mint I then have die inserted through the cannula which reacts with the contrast this gives you a warm feeling throughout your body it is a bit strange and makes you feel like you are weeing yourself but I have got used to this now it takes about 5 minutes then it’s over. See nothing scary but I am still sat in the waiting room nervously and haven’t slept the night before as in my head it is the beginning of the wait for bad news. It is not always bad news but when I dont prepare myself and get complacent thinking the treatment is working I get hit with the iron bar that it is not working and my world comes tumbling down yet again.
I do have a few coping mechanisms for scanxiety
I try not to think about it too much, mindfullness and relaxation can help on the lead up to the scan and results. I have been having reflexology and shiatsu from a local cancer charity this time and I do feel a little calmer.
I also take 1/2 a lorazepam before I leave for the scan to remove some of the anxiety feelings. I dont think it is weak to take medication to help you through it. I used to think I can’t pop a pill because I have butterflies waiting for results but it is a lot more than a little flutter in my tummy it is full blown anxiety. I have a racing heart, I feel sick, I sweat, I shake. I used to take diazepam and this got changed to lorazepam and I feel it kicks in a little quicker. I take a pill on my way to get results even if it’s just a calming mechanism for me I dont care if it stops me having a full blown panic attack.
I try and book a treat for afterwards. This time round me and my mum are going for afternoon tea.
How I feel getting Scan Results
I have an appointment tomorrow with my oncologist, he won’t have the scan results in the appointment as it takes some time for a specialist to look at them. It is the waiting for these results that can be hard. I dont understand why you must wait so long for results. I know a specialist needs to see them, but I generally wait 3 week and whilst I am waiting it pops into my head 10 to 20 times a day still waiting for those results wonder what it is going to be this time.
On one occasion I saw a registrar instead of my consultant oncologist, I thought I don’t mind seeing her as I had my scan results last time and my oncologist said they were OK. Anyway she tells me I have got progression on my spine at this point I was not aware it was in my bones but she didn’t have my notes and since she didn’t know me could not give me any more information until I saw my oncologist in another 3 weeks.
This of course made me very anxious I had 101 questions and no one to ask and I was petrified that the cancer had spread. It turned out when I saw my oncologist that it was calcified bone which means it was once a tumour but in the bones it sometimes doesn’t show until it has been destroyed which is why it is showing now as it is no longer there. I was to start an injection that helped with bone strengthening but nothing else was needed. This immediately put me at ease but I was fretting for 3 weeks and getting very upset just because this registrar did not know me did not know my history and could answer questions.
I now have a rule that I will not see anyone else apart from my consultant oncologist. I am quite lucky that apart from one other occasion I have always got to see my consultant who now knows me and knows I don’t like being given too much information and he keeps me calm. It is important that if someone is giving you scan results that all the information is there as you are bound to have questions and if they can’t be answered that can cause even more stress.
I normally wait 3 weeks for scan results sometimes its been 6. If the phone rings my heart beats ten to the dozen as I panic they have discovered something and want to see my urgently. I don’t know why as this has never happened, even if the scan shows something he waits until I have my appointment.
Sitting in the waiting room waiting for the scan results is when my heart starts racing. I think if he calls me in first it is to tell me bad news so I have plenty of time to ask questions. I then think if he calls me in last he is waiting until the end of the clinic to give me bad news so it doesn’t hold up other patients. – can’t win really!!
He did say to me on my last visit that things were looking good my blood markers are down which had increased in December, he never told me this at the time as he knows I would freak and I was on a new chemo that takes some sessions to start working anyway. He said it has gone down so he is not expecting anything sinister on the scan and even if there was I have other options but I still won’t relax until I see him and he tells me the scan is OK and do you know what in a few weeks the process will start all over again when the letter of the next CT scan drops on the doormat.