Feeling misinformed

User

Posted 25 Oct 2018 at 09:28

Hi all, as the wife of a 63 year old who has just been diagnosed, can I firstly say this site has been a great help over the last few months whilst hubby has been undergoing tests, so I felt it was now time to join this club that nobody really wants to be a member of!

On finding that my husband had a PSA of 33 in June, he has since had a DRE which felt slightly irregular, an MRI which came back clear, bone scan clear, TRUS clear then the last test was a Template biopsy.

So last week we went for the Template results and were told that cancer had been found but not to worry as it was contained and totally curable. He told us that a team of consultants and various medics would be meeting in a couple of days to discuss H's case and to review whether surgery or radiotherapy would be the best option. We would then have another appointment to discuss the treatment. I asked the Gleason (which I only knew about thanks to this site!) and this was 3:4.

So the second appointment was yesterday which I couldn't attend and hubby was happy to go alone as it was only to discuss treatment and he had already decided that he wanted surgery if this was possible. We were shell shocked to say the least to find out that surgery was not an option as the cancer had spread out of the prostate to the base of the bladder and was T3. H asked what had changed in the course of a week and the reply was that sometimes one piece of information was not enough and that the whole team had to meet to discuss the case.

What we cannot understand, and H didn't ask as he was so shell shocked, why on earth was he called for an appointment prior to the team having met. In the space of a week we have gone from feeling really positive to being shot down in flames.

Any advice would be much appreciated.

Thank you.

User

Posted 25 Oct 2018 at 13:43

Rather than what's happened, focus-forward on treatment.

Surgery isn't as good an option as is often thought... survival rates are about equal to not having it.

Things may not be as bad as you currently fear...

I have a T3, Gleason 9. After 3 months hormone treatment, they'll soon blast-the-****-out-of-me with radiation, and about which they're reasonably optimistic of 'cure' with relatively minor side effects.

User

Posted 25 Oct 2018 at 13:50

Hi Lou,

Your husband has certainly been in the wars already, what with an inaccurate TRUS biopsy, only to be followed by an inconclusive MRI and a subsequent template biopsy.

I think the inconclusive MRI probably foxed the Multi Disciplinary Team - there were umpteen specialists on mine - and someone probably said at the end, “Let’s re-evaluate the results” hence the revision in staging. Of course the team should have met and prognosticated before your appointment. The good news is that he will probably not now have surgery and will most likely be offered treatment with what they call “curative intent”.

I was ‘upgraded’ to T3 after my prostatectomy, as the MRI didn’t see any spread outside the prostate capsule, but the surgeon once inside me did!

So although my PSA is undetectable now, there is a chance I may have to have treatment with “curative intent” at some point in the future, which will comprise hormone and radiotherapy. Not something to look forward to, but with medical advances year by year the success rates of surgery and therapies are virtually neck and neck.

Anyway, I wish you the best of luck, whichever treatment he has.

Cheers, John.

User

Posted 25 Oct 2018 at 14:04

Thank you, yes you're right no point focusing on what we can't change.

Good luck with your treatment.

User

Posted 25 Oct 2018 at 14:14

Thanks for your reply. Your experience just goes to show that even the most sophisticated pieces of equipment don't always detect what the human eye can see. Good news that your PSA is undetectable now though.

Good luck

User

Posted 25 Oct 2018 at 19:26

Hi Lou - I can see why you were so shocked. However stay positive. I was almost exactly the same as your hubby - I was PSA 33 with clear MRI and clear bone scan. My biopsy was originally 2 out of 10 positive gleason 7 (3+4) but by the time the team had met and discussed my results this was upgraded to 6 out of 10 positive which came as a shock.

Everyone has their own journey, however all I can say by way of encouragement is that I chose hormone therapy followed by radiotherapy and now 10 months post all my treatment I would seem to have a cancer free prostate and no lasting treatment side effects (although I do produce less seminal fluid now) - so keep your spirits up - with radiotherapy a good oncologist and treatment plan has a great chance of success.

Ask lots of questions and get clarification on why they think there is some bladder involvement as its unlikely the biopsy would show this - It could possibly be something they are postulating after a closer look at the MRI.

User

Posted 26 Oct 2018 at 08:32

Hi Tony,

Thank you for your encouraging reply. I certainly do have a whole load of questions to ask the Oncologist! I feel it will help much more if we have a full understanding of all the facts. I'm glad everything has worked out favourably for you and here's hoping it is the same for my husband.

Kind Regards

Lou

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