Getting The Diagnosis of Cancer
There are many different paths that lead each of us to this point. Being told you have cancer is dreadful.
For me, it was a chance discussion with a work colleague to whom I shall be forever grateful. She asked me if I had been called for my routine mammogram which then led me to examine my breasts and the rest, as they say, is history.
I was stunned as I hadn’t expected to find anything.
There are obviously a lot of different types of cancer and, therefore, a lot of different ways it can present. If you are at all worried about a symptom – whether your toilet habits have changed, you have a cough or you are losing weight for no reason (and many more symptoms) it is important that you seek a professional opinion. Do not ignore it. It will take your doctor a very short amount of time to either reassure you or refer for further testing. As with all these things if cancer is picked up early the outcome will be that much better.
The Long Wait
This is when the first in a series of waits may begin.
In the UK there is a system called the 2 Week Wait or the 2 Week Rule. This is a protocol whereby when your GP (Primary Care Doctor) suspects a cancer diagnosis a referral will be faxed off to the nearest 2WW centre, usually your local hospital. As the name suggests the centre will aim to see you and get your investigation underway within 2 weeks. In a lot of cases you will find out the diagnosis in this time.
Although 2 weeks doesn’t normally seem like a long time when you are waiting to be assessed or for results it can seem like forever.
It is important during this time to look after yourself. I know its easier said than done but try to stick to some sort of routine. Make sure there are plenty of distractions for times when you may be alone and prone to dwell on things eg music or an audio book in the car. Make sure you eat and get some exercise if you can. Whatever you are about to face you will deal with it a lot better the fitter you are at the time.
Now is the time to write down any questions that pop into your brain and, believe me, they will – often in the middle of the night.
No question is too stupid and hasn’t been asked before. If its worrying you then ask it.
At The Appointment
The appointment may feel totally surreal. I would advise having somebody with you (My husband came and I was really glad he did).
Having someone else with you serves several purposes – it is well recognised that when under stress (such as being afraid as in this instance) the amount of information we take in is only about 4% of what is said.
There is obviously a huge emotional impact on receiving potentially bad news and this can affect ability to think straight or drive home.
You will be glad you wrote down any questions (hopefully you remembered to bring it with you!) as when you are asked,”Any questions?” you may well sit there feeling completely blank (I did).
Be prepared that there will also be quite a few people present in the room, this is probably something you are not used to – as well as the specialist there will usually be a clinic nurse and a cancer specialist nurse. This is a good thing as they can all offer advice on different aspects of your diagnosis and care but can feel a little uncomfortable at first. Usually you are given time afterwards to have a chat with the cancer specialist nurse which is a good time to recap information from your appointment and clarify points that have been made.
Your timeline may be slightly different. You may have had a series of tests – such as a chest xray, CT scan or some type of biopsy before your appointment depending on the speciality to which you were referred. Breast cancer patients for example will likely have had a mammogram, ultrasound and possibly a core biopsy.
Things may be the other way round though and now may be when you are referred for tests to see what is going on.
Test results will usually be given to you by the specialist. Once again, be prepared with any questions – you should be given time to go over any worries that are bothering you so take your time.
There is often a lot to cover – there are so many options even with one type of cancer. No two patients are exactly alike so two treatment regimes can be very different. While it is interesting to talk to other patients and a vital support don’t worry if someone else you know is having a different experience to you. I have come to realise there’s a whole pick ‘n’ mix of treatment regimens!
It is quite normal at this stage to feel that your head is all over the place. Try and have someone with you to talk things through as you leave or even to sit and hug you in the carpark when you cry. It can be a good idea to have something planned to do after you have received the results – a walk or just a cup of tea while you get used to the idea of having cancer.
The Specialist Cancer Care Nurse
Once I left the consultant with my head all over the place I was given time with the Breast Cancer Nurse. This was really important – a chance to digest what had been said and a very supportive ear while I trotted out all the stock ‘How is this happening to me?’ phrases.
You have probably heard of the five stages of grief – denial, anger, bargaining, depression and acceptance. These were originally suggested in the 1960s by the Swiss psychiatrist, Elisabeth Kubler-Ross. Getting the diagnosis of cancer can take you through these stages and I can see how I have worked through these starting with denial (‘They’ve got the wrong patient!’) to now – acceptance.
The specialist nurse can go over the options. She will realise you probably weren’t at your most receptive in the appointment and will be quite used to this.
There will be some situations where just when you think you have got your head around the plan the plan will change!
This can be for all sorts of reasons but typically may be further results coming back which show the need for chemotherapy or further tests – bone scan etc This feels so frustrating and you will want to shout and scream – you will also get fed up of telling friends and family that there’s been a change of plan. Unfortunately this does happen – look on it that your team are continually reviewing your case and trying to do what’s best for you given the available information.
Getting on with It
Talking to friends and relatives who have been through this they have all handled this time of their lives differently and I don’t think you know how you will handle it until you are there – I certainly had no idea how I would cope with being told I had cancer and it surprised me.
A Swiss psychiatrist in the 1960s, Elisabeth Kubler-Ross talked about the 5 stages of grief – denial, anger, bargaining, depression and acceptance. Getting the diagnosis of cancer can take you through these stages and I can see how I have worked through these starting with denial (‘They’ve got the wrong patient!’) to now – acceptance.
I went from being a confident mum and career woman who had a good social life to being a bit of a grumpy hermit overnight (don’t tell my family I have confessed to this!) I have amazing friends but I was paralysed by the thought of going out and talking to people, even to the local pub.
My mum says she listened to a lot of loud music with a lot of singing along to get her through. There are people who carry on as if nothing has happened, working as normal etc but this does depend, to some extent, on what your job involves.