Would you complain about being told to expect a cancer diagnosis when you don’t?

[BuzzyBallz]

Context- I am a surgeon. My husband is a judge and we have a very busy life. Being tired is our default. However DH was remarkably more tired, we’re talking coming home from work early (at 5pm rather than 8) sleeping til 9, getting up having pizza and then going to bed again til 5.30)

I basically forced him to go to the drs and I wrote the e consult for him because I knew the medical words for things and how to get our gp to listen.

he submitted the e consult at 7.45 am on Monday, saw a gp at 10am. She did bloods and told him to Go home and rest.

On Tuesday morning he had a phone call from the GP saying he would hear from the national cancer centre near us, that he had an appointment for the following day, was told to not go alone and to expect ‘100% a diagnosis of lymphoma or leukaemia’

I never want to repeat those 24 hours, I saw his bloods and I knew that they were grossly abnormal so I could understand the importance of having him
seen by a haematologist.

We saw the haematologist and she said that he didn’t have cancer he had very serious glandular fever. The relief was indescribable. DH wants to send an email to the gp basically castigating them for telling him to expect a diagnosis of cancer when he didn’t have cancer? I feel like he would be a bit unreasonable to do that because his bloods were so abnormal I understand why they fast tracked him immediately, whereas his view is that he doesn’t have cancer and therefore could have been spared a horrible 24 hours where we thought he would need to re evaluate his entire career and life etc.

So am I being unreasonable to say I wouldn’t complain, because I understand why he was fast tracked whereas he thinks the emotional anguish they caused him was unreasonable. So who is being unreasonable?

Me- YANBU
DH- YABU

I’ll take it with grace if I’m unreasonable (promise)

As a surgeon - what do you tell a patient when you think they have cancer? And what do you do about it? Answer this by using yourself as an example.
I have both told people I think it's cancer when it isn't, and told people I think it's not cancer when it is. I remember the latter more, obviously. What I always do is put the patient first and make sure whatever needs to happen does. But if you complained to me about this it would seriously make me consider why I should repeatedly put myself on the line for any patient and why should I do that job?

Was that the exact phrasing

'100% expect a cancer diagnosis'

Most GPs would er on the side of caution and its may be bad news so take someone with you.

Were you in the call when the GP said this? My guess is it might have been said in the context of your husband seeming reluctant to follow up the results. In other words, your husband might need to reflect on what drove the GP to be so forceful in tone.

Anyway, I would have thought a glandular fever diagnosis would also mean your husband needs to review his work load for the next year or so. It certainly took me a year of not working much at all before I was properly recovered.

Also I'm intrigued because my dad is a judge and his working hours are very civilised... Far more so than when he was a barrister. I realise that's by the by, and probably different people or different sections of the judiciary have different workloads, but there may be ways for your husband to reduce his workload and it sounds like he needs to.

On the referral paperwork the GP has to confirm they've warned the patient that this is a suspected cancer referral. It sounds as if their language to your husband wasn't quiet clear but from our family's experience I know my father heard "I'm referring you because you have cancer" not what was said which was "because it may be cancer".

I'm delighted for you and your husband he was seen so swiftly and has received a non-cancer diagnosis, wishing him a speedy return to full health.

My son had lymphoma last year and I would've given anything for a 24 hour warning to be honest. We only found out due to it causing a bowel blockage which then caused septic shock so he was already desperately poorly and then a week later, they pulled us into a room at 11pm at night with an on call surgeon telling us the results have come back and actually, he has cancer.

I was later told that it was pointing to cancer but they didn't want to say anything until the full test results were back. I really wish they had warned us.

So I suppose the answer is that they can't win either way. I know that in DH's case, it wasn't cancer and the GP shouldn't have said it's 100% cancer but other than that, I actually feel like it was dealt with well (and quickly) so I wouldn't complain.

DH was told at the outset he almost certainly had cancer, he then waited four months with bodged biopsies and lots of to-ing and fro-ing before he got told he did. I wouldn't complain but I would want to have a discussion around the "100%" statement. It would've been wiser to reframe it as "everything points towards"

I can completely understand why you’d want to complain, as it caused you unnecessary stress, so no wonder you’re furious as you didn’t need to be put under such pressure.

She shouldn’t have said it with such certainty. Had she said ‘It’s indicative of xyz but let’s wait for the results’, but it’s as if she thought she was preparing you both.

Having said that, I don’t think I’d complain. I think I’d focus on the positive, though I can understand if DH did and he’s not being unreasonable if he did!

I am torn how to vote as I agree with you, the NHS has served it’s purpose here. Fast response to triage FBC testing, and if the news had been cancer his treatment would have been started immediately, which is a great outcome.
But that is quite a high level of
mental collateral damage for the patient and their family, thankfully only for 24hours in this case.

I do however think a complaint is warranted as while the GP acted correctly on the information the haematology laboratory provided. Less than 5 years ago when a result like that was seen in the lab, assuming you saw a report of an elevated leukocyte count, they would run a mono cartridge test (of the same nature used for covid we are all familiar with) and it would show immediately this was infectious mononucleosis/ glandular fever. They would also check a blood film to review the cells.

Sadly due to cost cutting it’s more ‘efficient’ now to act has they have and send back to the GP for them to determine whether to request a repeat FBC or request they add on an IM antibody lateral flow test- which takes 15mins and could be phoned.

For an adult over aged 20 it will unfortunately have a high chance of turning out to be cancer, hence your GP wasting no time. Although they probably should have phoned the lab and asked!!
The new process is considered cheaper than staffing the labs with qualified diagnostic staff who are authorised to make those kind of decisions based on the FBC.

On that basis I think you should complain as nothing will change unless this kind of feedback is provided. Either via GP as they are the laboratory service user who in this case will be dealing with the fall out from your irate husband. Depending on how angry his is perhaps you could report the impact it has had on you directly to the Pathology service your GP sends their specimens to.

As a former haematologist I would be furious and complain.

I’ve had friends and loved ones wait weeks after being told they have cancer (it was a cyst) age related macular degeneration (it was an entirely different and self resolving condition which did not mean blindness) and various other things. 24h is unpleasant but he needs to get a grip

This. I went to the breast clinic because of breast pain, fully confident I was wasting their time. At the end of the appointment they told me they were 98% sure it was cancer.
I think the following two weeks wait for biopsy results would have been much harder if they hadn't told me. Instead I had time to process the real possibility of cancer.

He should be grateful the GP took his symptoms and results seriously and managed to offer him a next day appointment with the specialist

I would consider talking to the GP about this, but only to give them constructive feedback and explain how stressful it was and they may reflect, tweak the language they use next time. Rather than making an official complaint.

Round here, you’d still be waiting for your phone appointment to see if you needed to be seen face to face…
And the 2week cancer pathway was 6 weeks when I had a breast lump last year. (Luckily was a cyst)
I think count your blessings!
Incidentally, I didn’t know adults got glandular fever - I thought it was a teenage thing, every days a school day!

Absolutely no way in a million years would I complain in that scenario

I would also question whether the GP actually said it was 100% certain to be cancer. I think your dh was probably being blase in the first instance and then in reaction to the referral was surprised by what the GP said and maybe ( understandably in shock ) interpreted it as more of a fact than a a very high probability. A very high probability is still not a certain fact so sometimes it will be a happy surprise. Why the hell would you complain about that?

The 100% is a bit off but I can understand the GP trying to prepare him in some way.

Where in the UK would this actually happen these days? Submit econsult on a Monday at 8.45, get a face to face appointment at 10am, blood taken and results returned the following day. Appointment made at a national cancer centre for the next day after GP has given a 100% diagnosis. God bless the NHS!
In contrast, my DH had a suspected UTI, spoke to GP mid morning after submitting e consult and picked up prescription later that afternoon. Dropped off water sample at GP before end of surgery. Got a call 3 days later to make appointment. Ended up with a referral to local hospital for bladder and kidney scan to rule out prostate cancer. Took a week for appointment to come through. Cancer ruled out. From first e consult to ruling out cancer was around 3 weeks and we thought that was quick.

If he literally said 100%, then that was unwise. A warning shot of highly likely would have been better. But I'd personally go with feedback rather than complaining, because it honestly sounds like you interpreted the blood tests the same way.

My cancer diagnosis was given to me by accident when an OOH NP opened the wrong bloody result on the screen in front of me, and I saw my biopsy result rather than the sputum sample. She panic-strickenly closed the window down fast, but not quickly enough. I didn't complain. From the look on her face, she was going to be much more careful in the future anyway.

Like @lljkk I wouldn't understand "expect ‘100% a diagnosis of lymphoma or leukaemia’" as meaning he definitely has one of these things. The GP was simply saying that this was absolutely what she would expect (not what she knew him to have) with these results and this appointment. Makes sense when he was planning not to go - he needed to be told, accurately, that this was what his GP would expect.

When you add to that that this was a phone call, unless he recorded and has the exact words, it may have been more vague still.

His reaction is understandable, because he has been scared and ill, but it's not reasonable. He should really be taking time off his very heavy responsibilities now, for other people's sake as well as his own.

I'd take this approach. The GP did the right thing but they seriously need to consider their wording in future

Was “100% expect cancer” verbatim or your husbands understanding of what was said? If he relayed a conversation to you then there might have been more nuance there - when you hear cancer that can be the only thing you leave with ringing in your ears.

Also, with blood results like your husbands, how many times would the diagnosis likely be cancer? Could you establish this with a bit of research as a dr yourself? If it’s 90-95% likelihood that those sort of results would usually give a diagnosis of leukaemia then I think the GP was correct to manage expectations, however YANBU if they definitely said it was 100% before a full assessment

in a similar sanario would it help to have feeback from your patients?

did haemotology do more tests?

I think he’s turning the understandable trauma of believing he very likely had cancer onto the GP & really they’re not to be blamed. Unfortunately health & life events can cause huge amounts of uncertainty & fear & of course this shld be minimised where possible but I think he shld try & concentrate on his lucky escape & unbelievably quick & efficient support from his GP to get this fast tracked when most pple would be told to rest more & manage their stress better or something. It’s possible the GP broke rank b’cos of your background & may have been more judicious with another non medical patient. In this case they were wrong but I think he should try to focus on the positive outcome & how grateful he would have been to the gp had they been right.

@BuzzyBallz I understand the rapid referral and that sounds inevitable and right based on the initial blood results, however nobody should diagnose a 100% certainty of cancer unless they have that information. It’s deeply irresponsible.

I’m commenting because I had a somewhat similar situation - not as strong as being told to ‘100%’ expect a diagnosis but being told an urgent referral was being put through followed by (word for word) the comment “I don’t like to use the ‘C’ word but…” (then trailing off). This was from a very young medical professional and I put it down to inexperience but it really wasn’t ok and caused me much more panic than the usual sort of comment along the lines of “we just need to investigate further/rule things out”. I was pregnant at the time and started to have visions of having to have a termination, for example, so it really wasn’t an responsible thing to say and I had a very stressful week as a result.

I’m guessing the ECG isn’t an urgent matter given the wait. Otherwise you’d have been fast tracked as well.

I'd just count my lucky stars everything had been dealt with so swiftly and thanks to the GP.

My MIL's GP faffed about for a full year telling her she had IBS and refused to refer her. This went on for a full year. MIL did not have IBS but a neuroendocrine small bowel tumour - she died a horribly painful death.