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Post-MDT appointment coming up ... any preparation advice for bad news?

User
Posted 18 Jun 2018 at 00:13

Hello, 

I am due to be getting results of bone scan / MRI / biospy soon - this follows a PSA score of 141 and an initial meeting with consultant which was fairly bruising (the consultant told me what they thought the situation was and that likely life expectancy was on the rubbish side of things). 

At this meeting I was so much in shock that my brain froze up a bit  - I want to avoid brain freezes if there is bad news at the next meeting (I know the Multi-Disciplinary Team have reviewed the results - and hopefully I'll get an appointment to see the consultant in a few days time)  So, the thing that worries me is the upcoming meeting: is there time and space to make decisions / ask questions ... I think if I am hurried or upset it becomes more likely that I'll make poor decisions / forget to ask the right questions

So, I would be sincerely grateful to hear any feedback or advice about how to prepare.  Particularly about what things to ask if the situation is cancer of the prostate or cancer plus metastasis.  also, should I be asking about clinical trials at this point?

Thanks in advance.

Steve

PS I do not mean to imply criticism of the consultant - I think he though he was doing the right thing ... it just felt a rather steep learning curve

 

User
Posted 18 Jun 2018 at 09:25

Take a list of questions and try to research what avenues you'd prefer for better or for worse news.  Be ready for whatever. Put on a poker face and poker attitude and don't let it drop whatever the news. Easy to say perhaps but it can help stabilise. Even better news needs serious thinking about.

I didn't experience such a meeting, except post biopsy. There was a nominated Macmillan nurse who rang straight after the MDT and told me what was said.  That was reeally good, as at the next meeting I knew what was likely and what I wanted.

Good luck.

User
Posted 18 Jun 2018 at 09:28
Read what you can on this forum and others so you are well informed about other people's experience.

Don't let consultants boss you around, ask about second opinions. it may not change treatment but I think it helps your mind to get other opinions.

If it is bad news make sure ask about the modern approach to advanced PCA and what your consultant thinks about ajuvant therapies and whether any are applicable to your case.

User
Posted 18 Jun 2018 at 10:11

This is the second post that mentions Consultants talking about life expectancy early on in diagnosis. This is SO wrong IMHO.

To be giving out life expectancy figures before all diagnostic procedures are finally collated creates unnecessary worry and heartache.

They should wait until Gleason scores are available and it is proven that a PCa  patient either has, or does not have mets

You have not had results yet of your Biopsies, Bone scan or MRI. PSA of 141 does not even prove definitely you have a malignant PCa

Please try to be calm until you have all the data

i.e. I was diagnosed PSA 38 end January. I have had biopsies, 5 various scans, am on hormone treatment for 8 weeks now, I have a review this week to see when I can start External Beam RT and not once has ANY health professional even mentioned life expectancy 

A list of questions is the answer

I have 5 questions to ask at my review, I will take pen and paper to write down the answers, as I know "brain freeze" is possible when in these highly emotional situations

Good luck to you 

 

Edited by member 18 Jun 2018 at 10:22  | Reason: Poor Spelling!

User
Posted 18 Jun 2018 at 12:29

Steve,

I went completely to pieces in my post-MDT consultation. It's all right saying "keep a poker face", but some of us are emotionally incapable of doing that. I'd echo the suggestion to write down your questions in advance, and write down the answers as you get them, no matter how shocked you're feeling at the time. I left my consultation with no clear memory of anything the consultant had said after the words "prostate cancer", and I then had to arrange a second consultation to go back and find out what he'd actually said, which is not the ideal way to do it.

The other thing I'd strongly recommend is to take someone with you who can ask the questions if you can't. I don't know if you're in a relationship, but if so, take your partner. If not, try to take a friend. If you don't have anyone (as I didn't) ask the hospital to have a nurse go with you into the consultation - they'll all do this if you ask in advance. S/he'll know what questions to ask if you're in a bad way, as I was.

I wish you the very best of luck, and a positive outcome.

Very best,

Chris

Edited by member 18 Jun 2018 at 12:30  | Reason: Not specified

User
Posted 18 Jun 2018 at 12:33
When I went to get my diagnosis, they kindly offered to record the proceedings for me I case I glazed over. They gave me a CD of it at the end. I made my own recording of my second opinion consultation in Harley Street on my phone. I never listened to either.

I twigged after the DRE and mpMRI where a lump was found that I most likely had cancer, and the Registrar who did my template biopsy confirmed as much in our pre-biopsy consultation.

And so my MDT meeting was something of an anti-climax, as they were telling me what I already knew, but I did have a long list of questions on my iPad which we went through one by one. I have found it in my notes, so here it is if it any use to you:

Anyway, I have a question....or two.....

How much of my abdomen and thorax did the MRI scan? And I presume there are no

metastases showing elsewhere? Did it scan my liver, which has most rudely been referred to by medical professionals as “fatty”!

What’s the difference between template and target biopsy? Which did I have?

Why bother with a TRUS biopsy? How constrained are you financially?

Two friends, both with PCa, who have been down this road before me, one in London and one in South Africa together independently advised me - “don’t be palmed off with a TRUS biopsy”.

So heartfelt thanks to you again for booking me in so quickly for the Transperineal procedure.

My mate in Capetown has seen five top urologists in London and South Africa, two recommended surgery, one radiotherapy and two active surveillance. He has chosen the latter.

The point about TRUS was reinforced by the patient on the post-operative ward opposite me who said he’s got a three times oversized prostate and had a TRUS biopsy in August and then had to wait till January for a Transperineal biopsy where 100 cores were taken. You’ll probably see him when he comes in for his score. He said he may be referred to Cambridge for radical prostatectomy.

What’s in Cambridge?

So how big is my 15mm tumour in proportion to the size of the left lobe of my prostate?

How near is it to the edge of the capsule?

What would have been the difference in your approach to treatment, say five years ago, in 2013, if I had presented to you with a raised PSA of five or six, up from 2.2 in 2010, with a stage 1, 1mm, abnormal lesion?

Did you have 3T resolution scanners five years ago?

Do you use Da Vinci exclusively nowadays for RP? What’s the difference between Da Vinci laparoscopic and Da Vinci open surgery. Which is most appropriate for my lesion?

What are the recovery rates, days of hospital stays, rates of incontinence and impotence for each procedure?

What is nerve sparing?

What is Retzius sparing?

Recovering patients of radical prostatectomy and other hormone and radiological treatments say many Urologists play down the after effects..which can be life changing, but of course, also life saving.

What is HIFU?

What is Nano Knife?

In three years will most prostate surgery be carried out by IRE?

What’s not to like about it?

Is it the Holy Grail of prostate surgery as its purveyors for £18,000 or €13,000 a pop would have one believe?

When will it be offered here on the NHS? How many IRE electrodes would it require to kill my 15mm lesion? They can use up to seven and they cost £400 each.

So, my cancer may have been growing for up to seven years. Or seven months. Or weeks. How accurate is the histological Gleason score estimate as a predictor of future tumour growth? See, I referred to it as a tumour for the first time, rather than an abnormality. In fact, I am going to refer to him as Tommy the Tumour in future.

I see men that who have had RP the whole organ is excised and then once evaluated a different score is given.

What is the prognosis if we do nothing at all? Where are metastases likely to occur next?

Is orchidectomy a certain cure at this stage?

I could be the new Farinelli the castrato. But maybe post-puberty I’m too old. And my voice is not so good unless I have had a lot to drink in a Karaoke bar.

Where can I see your prostate surgery performance results on-line?

2nd opinion?

Active surveillance?

!

Copies of imaging, histology and radiologists reports?

User
Posted 18 Jun 2018 at 21:50
Dear all

Many thanks for all your replies ... really, really useful.

Having not wanted to think about it (shoving to the back of the mind is workable in the daytime but the night terrors take some coping with) I am now going through lots of the posts and finding out more and that helps.

Not a journey anyone wants to go on but I guess this one won't be boring ... @Bollinge: I hadn't considered the possibilities of joining the sopranos - thanks for the tip ;-)

Thanks again and I'll post back when it feels there is something useful to add

User
Posted 19 Jun 2018 at 05:10

Originally Posted by: Online Community Member
Dear all

Many thanks for all your replies ... really, really useful.

@Bollinge: I hadn't considered the possibilities of joining the sopranos - thanks for the tip ;-)

They say castration is a ”cure“ for PCa, and hormone therapy is just a less drastic form of that.

 
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