Doctor speak

[NorthernDancer]

Not the sort of letter you expect to get on a Saturday morning two weeks after an MRI. It would appear that DH has "changes consistent with malignancy" and "a lesion suggestive of bony metastasis".

Is this just doctor speak for "Yes, you have cancer and we think it's probably spread?"

We can't speak to anyone until Monday and are completely at sea. Any clarity would be gratefully received.

Don’t want to leave your post unacknowledged. MacMillan helpline 08082399397 8am to 2000pm. Best talk to someone
Does your GP have out of hours number? Or call 101 ask for a call back

i understand the content of the letter but I think you’d be best getting a call back as opposed to a mn post

Yes I'm afraid it does but you need to speak to the doctor how awful for that to drop on your doorstep over a weekend when you can't speak to someone. Call the Macmillan helpline id you can't get hold of your GP

101 is the non-emergency police helpline. 111 are unlikely to give any advice.

@NorthernDancer I'm sorry but essentially, yes. You shouldn't really be finding this stuff out via a letter though. Cancer is a very complex thing - some cancers are slow growing, others are fast growing, some are very treatable and others aren't, some will be treatable with surgery, others will need chemotherapy or radiotherapy....so many variables. Until you've had a proper conversation with a doctor, the letter hasn't really told you anything.

Thank you @Lougleand @Maddy70I guessed that was it. I think DH will be contacting the GP on Monday if only because the letter was dated 11th June and was sent electronically to the surgery, but he saw a GP yesterday afternoon who didn't mention it!

We know that we will not know exactly what we're dealing with here until after he has had a whole body scan at the end of the month. This letter arrived by the same post.

Time to regroup. Thank you

There are usually safeguards in place to ensure patients are not given “bad news” through a letter. Sounds like they have failed here.

As more and more info is uploaded on to NHS apps this is happening more frequently. I was involved in a recent complaint from a young woman who found out very bad news because the MDT outcome was sent to her GP - marked as NO PATIENT COPY and the GP practice uploaded it to the app.

We have specific “breaking bad news” clinics with longer slots to ensure patients find out bad news in the presence of doctors and cancer nurse specialists.

this should not have happened

The only positive , and I say that lightly is that it gives you some time to write a list of questions before you see your consultant. Regardless of how long your appointment is, the shock can make you forget to ask something you wanted to know

What should happen is an in person consultation with explanation of the results and options. Not a letter randomly delivered,evidently a process failing
I have mistyped 101 when i meant 111
I appreciate this must have been really difficult and stark, just a letter in print. no face to face

I’m so sorry. It must have been so awful to receive a letter like this, especially at the weekend.

I agree that you should have been told in a Clinic and given access to specialist support. I’m sorry that didn’t happen for your DH. If it were me I would consider a complaint via PALS.

I do agree with phoning MacMillan and sitting together and writing a list of questions.

MacMillan should be able to help you with the financial side of things too

Thanks everyone. We do not yet have another consultant appointment on the horizon, just a scan the week after next and a flow test at the end of July. and there is nothing on DH's NHS App.

I am not surprised really that the system, if there is one, has failed. This hospital has form, shall we say.

I would still complain. Even if it’s only to try and stop this happening to someone else in the future

In this instance I wouldn’t care a jot about not having a booked appointment.

call your consultants secretary 9am tomorrow and ask them to inform the consultant you’ve been given a diagnosis by post and would they like to explain themselves. Give a deadline of 12pm for a call back.

12pm no call back? call PALS and say you want a call back that day or you want it logged as a formal complaint.

ill eat my hat if that doesn’t raise a response

I would be doing this too @NorthernDancer

@NorthernDancer I am so sorry your family have had this awful experience.
And I hope you managed to get some answers yesterday.

Although, not to the degree of your news, I have also found out information about my cancer diagnosis in a letter than I definitely should have received face to face or over a phone call at least.
As someone else mentioned, the only possible ‘positive’ in this situation was that it gave me time to compile all of my questions and get them answered thoroughly at my next appointment.

That’s not realistic . Consultants may not be at work that day, or doing clinic or performing interventions.
Reasonable to ask for a call within 24 hours and go to PALS after that . But 3 hours …no

I have to say it is really crappy though. Not right to send scan results without explaining and counselling and in the case of cancer this needs to be face to face unless it is expected news and the patients finds travel hard and has expressed that they prefer telephone.
so sorry that you are in this position x

@NorthernDancer I am sorry to hear your news and hope you have support through this difficult period. I have seen your name for years.

I hope things are being put in place now for you and your DH.

That's shocking communication but you need to phone the consultant's secretary not the GP, who will know nothing more than you do. If you get nowhere, call PALS at the hospital

Thank you everyone. I would have done all those things. As it happens all I have been able to do is have a helpful conversation with a lovely lady on the Macmillan Helpline, who confirmed my interpretation as per my OP and advised making a complaint.

However, at the end of the day, this is DH's issue, not mine, and he gets to run it as he wants. So, he is currently deep in denial, will not phone the hospital for any reason, and will not let me advocate on his behalf, so nothing is happening. Nothing at all, except I have a serious anxiety problem.

I have liberated a new notebook and am making lists.

Hi @NorthernDancer , how are you doing ?

Thank you for asking. About the same frankly, which is making me very stressed and DH less so. He has now tried to speak to somebody at the hospital but despite leaving a voicemail message last Wednesday no one has yet called him back. He says I should not worry. If he dies as a result of this I can always sue them! That is really not the point

I’ve very sorry to hear this, Op, and can’t imagine what an awful shock that must have been to receive it in a letter like that.
Although it had been sent to the GP surgery it most likely had not been added to your DH’s record when he saw the GP. I work in admin at a GP surgery and although we all have our own email addresses, there are only a couple of people who can access the emails sent to the surgery address.
Hospital and GP IT systems are separate so until the letter was uploaded to his record, which may take a few days, the GP would be equally in the dark.
I hope you get some answers, both about treatment and why they put it in a letter to DH.

Oh gosh, I'm so sorry. It must be so incredibly difficult to manage when you are both on different pages.