Any suggestions for coping with uncer... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

4,514 members2,704 posts

Any suggestions for coping with uncertainty during diagnosis?

Lavender-Flowers
Lavender-Flowers

I wanted to say thank you to everyone who replied to my last post. It was really helpful for my appointment yesterday.

I spoke to a nice locum doctor a few weeks ago who arranged for a plain chest xray and blood tests. I couldn’t get a GP appointment soon enough after the ‘normal’ x ray report and ‘slightly raised chronic c reactive protein’ to speak about the pain and other symptoms. However, a new GP at the practice saw me yesterday and just pressing down on my chest was very tender and had me calling out so I am having an urgent referral and I requested for referral to Guys and St Thomas.

I am tired and confused at times and its a worry to have tenderness just by pressing my chest. Things seem to have changed pain wise so quickly in the past few weeks and the NHS so slow in responding without putting on a firm and determined manner. Does anybody have ideas how to prepare and cope with journey to diagnosis? Particularly how to keep calm.

My mother is particularly prone to hysteria, my father has confusion and walking issues from a traffic accident, and my long term boyfriend is easily hurt by feelings of abandonment. Ive been the strong one most of the time but now the tables are going to turn, they will have difficulties coping and I don’t have many people to relax with.

Update: My previous doctor at the beginning of the month said I should get a second opinion and my concerns taken seriously. My current doctor has on the face of it pushed me through Rheumatology and my appointment isn’t until Nov!

5 Replies

Chest ex ray didn't find my husband's

cancer. Get a CAT scan or MRI asap. I am

In US. We went to an ER = emergency room & got diagnosis. Take care ♥️

There's a lot in your posting - so here's rather a lengthy posting - hope it helps.

Chest x-ray is the standard test in the UK and blood tests will check a number of things. Chest pain can be symptomatic of several conditions and tenderness could be inflammation, infection, bruising or something else. Many GPs are unfamiliar with all the lung cancer symptoms as they can be so general so they send people to rheumatology or community physiotherapy anyway. There are definitive pathways for assessing or fast-tracking suspected cancer within 2 weeks so I'm guessing that your normal Chest x-ray and blood tests are determining why they 'appear to be so slow' to you.

As well as being a patient, I'm a lay director within the NHS in commissioning health services so understand how some things progress. Referrals are not instant and as you've requested a specific Trust, this will have to be arranged. I'm not making excuses but unfortunately we're used to 24/7 society and fast responses but determining symptoms into definitive diagnoses take time and in the case cancer is suspected or a heart problem, certain tests have to be done to determine appropriate treatment. This can take several weeks. I know anxiety won't help and can increase pain receptors' response so although difficult, better to distract yourself and take pain relief to help. Tenderness could be a chest infection or something else so try not to think there will only be one outcome. Doctors have to be detectives, fitting together various clues to reach a conclusion.

Many patients do not experience pain until later when tumours are evident on chest x-ray or scans and even then, further tests will be done (biopsies, bronchoscopy etc) so patience is essential.

I do understand your concerns - I had to wait a month for a scan (as scanner had broken down) after being hospitalised for a week (misdiagnosed as asthma despite a 'lesion' being evident on chest x-ray at admission) then a further month before treatment and another month before diagnosis (lung cancer) after losing half my left lung back in Dec 2010. Yet I had no pain (until after surgery).

Keeping calm can come in many ways - I had just 2 weeks between being told I would lose half my lung and having surgery yet they were possibly the most productive of my life - designing and delivering work assignments to clients, writing xmas cards, buying and wrapping xmas presents, attending every xmas function to which I was invited, having a will written (a bit negative but had never got around to that), going out for meals/cinema and swimming. That was December 2010 and I still work, travel and get on with life.

Trying to live thinking every minute/hour of 'what might be' is debilitating in the extreme and a waste of life you will never get back. A friend of mine (acupuncturist) had pneumonia about a year after my lung surgery and convinced himself it was more sinister as he was so tired and weak yet it was 'just pneumonia'. I'm not trying to 'dis' you or him but if we're not careful, our minds can exaggerate things out of proportion and there can be several potential causes of your pain that are not cancer. Many conditions are painful and debilitating.

If you cannot wait longer, you could call 111 and explain and they may refer you to an emergency healthcare centre where you would see a different doctor or go to a walk in centre where they will offer you (after waiting) access to medical help.

Tiredness is inevitable if we're not sleeping well - which can be a given when things are so uncertain and confusion goes hand in hand with lack of sleep so rest if you can. Good luck - hope you get some answers soon.

Thank you for reminding me that the NHS is a bit slower than daily pace of life.

I guess I’m particularly worried because a cause for concern was hinted at by a Rheumatologist in the spring at a different hospital and not followed up by letters etc. and I’ve had to move in the meantime. Waiting, again, for referral letters feels like a set back, particularly when the pain is now spreading to armpits and neck and yet is confirmed as not being a chest infection.

Sometimes hints by other clinicians can add to our anxiety too as you show. Have you told others about whatever the rheumatologist said? Have you spoken to the rheumatologist since to ask what was meant by the comment? I was told by a urologist, cardiologist and hand specialist that my symptoms for which I'd been referred to by the lung consultant were more likely linked to my original condition 2-3 years after my LC surgery and last year, referred to an immunologist who again suggested (without any further testing) that he doubted the frequent chest infections were caused by allergies but more akin to my 'original issue' and the trapped nerve in my elbow that caused neuropathic pain and loss of use of some of my dominant hand in 2015 could be caused by 'a tumour pressing on a nerve given my history' (it wasn't thankfully but once again I was sent back through the loop of investigation for elimination as much as inclusion). Once there is a diagnosis, others can latch onto that rather than investigate the cause which I experienced originally when I was misdiagnosed as asthma (the lung cancer and matter of lesion on the chest x-ray were overlooked) as I had been admitted, carrying an inhaler that I had for cat allergy!

The NHS is not joined up and we are sent to different services, often different centres in different locations to look at different organs in our bodies. The pain you're describing doesn't sound to me like lung cancer - usually pain is a 'late symptom' when it is obvious from other tests so here's hoping you get to see somebody who can investigate soon.

If you've moved where you're receiving care from, usually they start again (unsure whether that's a lack of trust between organisations or whether they're unable to read tests on their IT systems from other Trusts plays a role) so adds to waits but on the other hand, means that test results will be current rather than months old. I trust they're checking your heart out as pain in the arms can be caused by several sources. do you remember having any falls or illnesses that could explain the chest area tenderness? hope you get some answers soon.

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Lavender-Flowers

Apologies for the delay in replying to you, however JanetteR57 has, as always provided an excellent response to your post.

All the ifs and buts do take us all on the road to anxiety, which in turn does not help any symptoms we have , but in fact sometimes can worsen them. It is understandable the worry in the waiting, of something that may not be what we think it is.

If you are looking at things on the internet, be careful and only use sites such as roycastle.org, /cancerresearchuk.org or macmillan.org.uk

There is much information out there that may not be accurate.

If you wish to speak to someone on your anxiety, there is a helpline number from anxiety UK: anxietyuk.org.uk/ 03444 775 774

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

You may also like...