Would a consultant give a realistic prognosis to a wife without husband knowing?

[SilverBat]

DH has just been told he has bowel cancer, had a CT scan and it's shown up spots on liver and lung. He will be having a PET scan in the next few days. Booked in for the bowel surgery next week.
Consultant is very optimistic that it is all treatable, but is that just him trying to keep DH positive - would he tell me if I rang up to speak to him?

[MedSchoolRat]

Sorry you have to face this.

You're sort of right to think you'll get somewhat different information... The ethics code is they have to give all the correct info to your DH, to the extent that he can absorb it. And your DH would have to give his permission for you to discuss his condition with the consultant too, btw. So what consultant told your DH says should be all true and complete. But the consultant may present their own opinion of the info in slightly different ways to different people, depending on their role... you're a carer so you need to know what to expect as a carer, not as someone who needs to be ready for what their own body will go thru.

Or you could be more or less upset about this, so less or more able to take in info that your DH wasn't able to understand or remember. Ill people are often the people who can least understand and act on all the info they get about their health.

Does that make sense?

[SilverBat]

Thanks for the reply.
I sort of get it, so if DH says could I ring him too (he has told him to ring if he has any questions, but was looking at DH obviously), then that would be seen as permission?

[mrschatty]

Your dh would need to speak to his nurse to confirm that he is happy for you to have access to the information
My dd did this for dm as he didn't want to talk about it

[mrschatty]

Dd-dad

[Chasingsquirrels]

We had the opposite - DH diagnosed with stomach cancer with liver mets. At the initial meeting the Consultant's actual words regarding prognosis were "average life expectancy of 12 months, but could be slightly longer or significantly less depending on how it responds to treatment. It was very clear, without being put into actual words, that in his view DH would be extremely lucky to make the 12 months.
He made no bones at all about the fact that it was not curable.

DH has actually responded well to initial chemo, and while it isn't curable the short term prognosis is somewhat improved. The Consultant has been up front about this as well.

BUT that's just our experience.

Best of luck to your DH and you xx.

[Wolpertinger]

Not unless your husband gave permission for you to be spoken to without him being there.

Bowel cancer in this situation is definitely treatable. I would guess your specific questions is whether it is curable. The answer may be 'potentially ' depending on response to initial treatment, or no.

However I would strongly counsel you to think about the impact of you having information your husband doesn't, for example knowing it's terminal when he thinks it's curative. These situations can only be sustained in a healthy way for very short periods without having significant impact on the marriage due the amount of lying that has to be sustained.

You can easily ask for clarification and hopefully your DH should have a specialist nurse who will have more time to talk through exactly what is going on. I suspect a lot depends on how he responds to first treatment and it is difficult to give an honest prognosis until further down the line.

[Sunnydawn]

My Dad didn't want my Mum to ask, and so she couldn't find out any additional information.

[Sunnydawn]

Sorry, posted too soon...I think he will need to give them consent to talk to yo.

Hope the op and treatment goes well.

[MedSchoolRat]

It sounds like your DH already gave permission?
imho, you should ring. No one expects either of you to get your head around this easily.

Would you feel better if you had specific information? You could go over the details of what are the next steps. What info will the PET scan yield and when will they be able to tell you what those results said, when can you expect a date for the surgery, what will they try to achieve in the surgery, how can you prepare for the surgery, etc.

[Blu]

Sorry you have received this news, OP, and wish you and your DH all the best for his treatment.

I have no experience of cancer diagnosis, but plenty in speaking to consultants. They don't 'spin' the story to make people feel more positive, and I think it is against their training to do so. They may proceed cautiously to see how much a patient wants to hear, and be led by a patient's questions but they don't do fake reassurance.

[Wolpertinger]

Am reading your post better now I am not on the bus.

I'd agree consultants don't spin news although some remain rubbish at making it clear when bad news is bad. However bowel cancer has many many treatments available and I suspect this is why the consultant is being positive.

Which consultant have you seen - surgeon or oncologist? Some surgeons do tend to focus on their bit, the operation, and not so much on the prognosis with chemo etc after. Have seen a few patients very disappointed (my dad included) when they finally met oncology after having a jolly time with the surgeons.

However all of this is a bit academic as your DH hasn't had his PET scan yet. No one can really answer your questions fully until the results of that as it will decide what treatment your DH can be offered.

In the meantime I suggest you make friends with DH's specialist nurse and share all info together.

[SilverBat]

Oh goodness, I only took the dog out and now there are too many replies to digest in my current state of mind. Thank you everyone.
It's been a whirlwind, DH only went to the doctors a couple of weeks ago with very unspecific symptoms which I just thought were stress. Yesterday he had a colonoscopy, found the cancer (even though the biopsies haven't been confirmed yet he says he sees enough to know) Got him in for a CAT scan in the afternoon, and we went to meet him today to discuss - which is when it got worse . I made the mistake of going on the Cancer Research website, after today, and wish I hadn't!
We have private health insurance that's why everything has been so quick.
So, it's op on the bowel next Thursday, where he is certain it can all be removed.
Meeting with the other specialists on Monday (hopefully he will have had his PET scan by then.
Most likely chemo
Another op on the liver.
Spot on lung was only 4mm, and that's all I can remember.
DH is glass half full, and will just break it down in chunks, I'm the opposite.

[MedSchoolRat]

It's a journey... rather like pregnancy, now that I think about it.

So breaking things down into chunks is actually very wise, because no way is it possible to give a reliable full set of predictions about the whole journey (sorry).

You'll be supporting him. Who will be supporting you?

[Littleelffriend]

My mum's consultant told me and me brother that she only had a couple of weeks when I asked her. Mum didn't need to consent.

[FiveGoMadInDorset]

Good luck silverbat we are waiting diagnosis as well, although again DH has been told he has cancer, probably, he has a colonoscopy and biopsy booked for next week

[SilverBat]

It's the consultant that did the colonoscopy that will be doing the operation Wolp
The other specialists are having their meeting on Monday, we haven't had any contact with them yet, as it has been so quick.
We met the pre op nurse ( I think that's what she was called), and have an appointment with her next week. She was really nice and easy going.

[Wolpertinger]

OK with private health insurance you often miss out on the bits the NHS is good at like the emotional support and specialist nurses. Brilliant for quick tests but can be highly medicalized and not so good at the softer stuff.

Bowel cancer is a long journey. The chunks approach is good.

See what if any support your private cover offers - is there a specialist nurse? What support is there during chemo - where will it be? Consultants at the end of the phone sounds good but they are a bit rubbish when all you want is to ask a silly question or burst into tears. If there is no support can you access the NHS support?

Locally there's one private chemo unit that's fab and one I wouldn't touch with a bargepole. Make sure you have the right support all the time.

[SilverBat]

I know it makes sense to break it down Med, but I'm not designed that way .
My support has always been my DH, which makes it extra hard, as I don't have any backup.

[SilverBat]

I'm sorry you're going through it too Five.
It's a bastard.

[Wolpertinger]

Cross posted- you have seen the surgeon. The surgery is obviously important but the much longer part of the journey will be decided at the meeting on Monday and probably more of your questions will be answered by the oncologist you meet who attends that meeting.

The outcome of that meeting will decide whether your DH has a potentially curative cancer or all treatment is aimed at prolonging his life but ultimately they know it is not curable- this is called palliative treatment. Even if this is the outcome there will still be lots of options for treatment.

I know what you mean about the Cancer Research website - I tell people not to look unless they are sure but when my dad was diagnosed i was on it in seconds. It is a great resource but as above, in chunks.

[SilverBat]

I already have my own personal experience with the nurses where he is going to be Wolp. I haven't come across a jobsworth yet!
I read through the bumpf with the insurance people, and there is support there, but I don't feel the need to speak to someone I haven't met.

[SilverBat]

Sorry about your dad Wolp
Unfortunately I have had far too much experience with cancer in my family.
My mum had breast cancer, she's still here, but my father died of prostate cancer.

[Wolpertinger]

Sorry to hear that. I can see why you want to know where things stand. You are in a limbo phase really at the moment until all the information is in and analysed. If you can try to think of this as a good thing - there are cancers where you can take one look at the patient and know that regardless of tests there will be no treatment. So waiting means something to wait for.

[Summerisle1]

I'm sorry to hear your DH's diagnosis but actually, if, beyond his bowel cancer, he's pretty fit and he really does only have very minor spread to his lungs and liver then he's certainly treatable. In our experience (3 and a half years since my DH was diagnosed with Stage 4 bowel cancer) consultants are realistic. They don't tell patients that conditions are treatable when they aren't and equally, they are gentle but truthful when things go beyond treatable. Which is where we are now.

[Summerisle1]

PS. Your consultant will only speak to you privately with your DH's permission (which is as you'd expect) but I would be very surprised indeed if you were told anything that your husband hadn't been told himself. Whether your DH has interpreted this information in the way the consultant intended is, of course, another matter altogether. It was to try and cut out misinterpretation that my DH always wanted me to attend all his oncology appointments with him.