Patient confidentiality: if grown-up ds doesn't want to hear provisional histology results

[niska]

...but the full meeting with all medical staff won't be until 4 January, can ds authorise and ask for histology results to be given to me or dh, so at least we know what we are going to be dealing with? An oncology nurse has offered to give the histology results over the phone to ds, but he initially said he wanted to wait till the full meeting - he didn't know it wouldn't be until January though.

Please don't flame me - I can give further details if you want them.

It isn’t classed as withholding information (and we do get a number of pissed off patients who think it is). It’s about giving information at an appropriate time when there is support for the patient.

You can’t tell someone they basically have cancer over the phone. The nurse gives him the results and then what? Hangs up the phone and leaves him to it?

The first thing most people are going to do is run to google which results in a panicked patient phoning up again with a list of questions. It’s best covered in a results clinic with his consultant.

That is what the nurse is offering, though.

If they’ve had the MDT and the nurse was happy to share the information before they’ll still be happy to do it now. They understand what a stressful time this is and know it sometimes can be hard you you to decide whether or not to hear the news. Nurses especially cancer nurses care about their patients and she will make time if you need it.

I hope he gets to speak to someone very soon and that the outcome isn’t too worrying.

That is what the nurse is offering, though.

Hopefully what the nurse is offering is a call where she talks him through the diagnosis, the plan for any further testing or treatment needed, when that will be carried out and how he can get more information and/or how to get hold of someone if he has more questions or concerns. Ideally she'd do this in person so she can see his face and reactions but it sounds like she's comfortable doing it on the phone.

What she hopefully won't be doing is just telling him it if it was cancerous or not then hanging up.

I understand that you're really anxious and impatient but this is a much better option than you demanding to see his histology report, which seemed to be what you wanted in some of your posts.

Happy to get any info at this stage.

All of this is very new. I didn't know what histology was.

....until the nurse offered to give him his histology.

Happy to get any info at this stage.

I understand that and I think his medical team likely do too. But it is hopefully helpful for you to understand that they aren't withholding information, just trying to fully look after your son by making sure he gets the information in an appropriate way and respect his confidentiality and what he wants in terms of information by respecting his wishes when he said he would prefer to wait to see the consultant.

It is also his information to get and to share. Yes he could have given permission for you to receive it and not tell him but I really truly think that would have lead to a miserable Christmas with you frantically googling and being unable to fully keep it secret because I doubt anyone could under the circumstances.

Ds has now had an email saying the histology wasn't ready for the MDT last Thurs so it will now be discussed at MDT this coming Thurs. Thank God the nurse has also arranged a meeting with a doctor on Friday to discuss all the results with ds. At least that will move things forward a bit, whatever the results may be.

Thank you for the power of MN and for all the hugs. I may be back to ask for your prayers.

That makes sense. The nurse was probably originally offering to call to explain that the histology wasn't back yet.

Best wishes to you all. I am sure you have already read that, even if it turns out to be cancer, seminomas are usually completely curable - though of course it's still a huge thing for your DS and the family to be going through

That makes much more sense. Good luck for Friday

That sounds like a sensible way forward. I will keep my fingers crossed good news and no further need for treatment

What a worrying time for you. I hope you get the very best results on Friday.

Keeping everything crossed for you and your lovely DS for Friday.

Hope it all went okay