Concerned about my husband

User

Posted 15 Dec 2015 at 09:10

Hi everyone,

I joined here 18 months ago because my dad was dxd with high grade PCa. He's doing okay on HT. Latest PSA 3.1.

But now I have concerns about my husband. He's 62 and had his PSA tested a couple of months ago. It was over 6. It was retested 6 weeks later and came back around the same, between 6 and 7. The GP did a DRE and felt a "rough patch". He was scheduled for an urgent MRI last Monday and a biopsy this week. In the event he was called up two days after the MRI for the biopsy as the hospital had a cancellation slot. I was away so couldn't go with him unfortunately as when he had the biopsy the doctor was unaware he'd had the MRI and the results weren't on his file and hence the biopsy was done blindly. He has an appointment for the results on Xmas Eve (ugh). Of course I'm very concerned and I'm sure he is too but he's keeping it to himself. Whilst I'm pleased the system is generally kicking in to get these tests quickly, that in itself worries me as clearly the doctors are concerned it is PCa.

Thx Kate.

User

Posted 15 Dec 2015 at 14:20

hi kate
this is always the worst time waiting for results, but until you get them everything is on hold, I assume you already have the toolkit from earlier if not I would ring and ask for it to be sent out loads of info inside, the system does seem to feel as if you are being rushed but its all normal time lengths
when I had my biopsy it was 3days after my DRE, I didnt have any scans until after these, but all the results of the scans took 10-14days so you are not getting any special treatment time wise

just make sure when you go to have your list of questions and a spare sheet of paper to write down what is said, if you feel you cannot manage it take along other members of your family, when i went for my results had wife,brother and daughter with me, my daughter took all the notes

rerds
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 15 Dec 2015 at 14:41

Hello Kate

Well firstly, hurried as the biopsy was he had at least had his MRI first so it won't show irritation from the biopsy.
Our confirmation was Christmastime too so we didn't tell the family until afterwards.

Nidge has already given good advice.

I wouldn't read too much into the fact that the biopsy appears to have been brought forward. It was probably due to the fact that somebody cancelled or they are fitting extra men in before Christmas to make it easier for the staff.

You already know from your dad's history that these days treatments are really kicking cancer's backside and there is no reason to suppose at this stage that your husband shouldn't be one of those successes.

Yes (if it is cancer) treatment is likely to be life changing but I have no doubt that you will support each other to the best of your ability,

Good luck and please keep us posted.

All the best Sandra

We can't control the winds - but we can adjust our sails

User

Posted 15 Dec 2015 at 18:38

Hi Kate
So sorry this is awful timing for you both but don't despair yet! It's just great that they are racing forward with your treatment -- this is NOT an indicator that you are urgent at all. Simply the quicker you react to a potential cancer the better.
In my particular case the MRI was done directly before the TRUS biopsy so it wasn't guided either. I think they just want a general 10 core spread. Only after the results of those tests was I steered towards a template biopsy and guided TRUS , along with further scans.
My fingers are personally crossed for you on Xmas eve. No point in me saying don't worry , but at least try not to panic.
Chris

User

Posted 18 Dec 2015 at 21:48

Hello Kate.

I'm sorry you find yourself here. We had similar psa numbers to you. Here is a list of dates etc- it might give you some idea of what to expect

Blood test at GP 26th September 2014

Recall to GP 29th September

Hospital initial appointment 7th October

Biopsy was done same day

Follow up appointment and diagnosis Gleason 9 tumour 22nd October

Bone scan 4th November

Mri scan 6th November

Referral to different hospital 11th November

Appointment with consultant urologist 22nd November

Surgery 1st December.

We were offered an appointment with the oncologist to discuss options, but my oh decided on surgery almost immediately. He didn't feel like he could live with having a prostate. At least without one there was no chance of it starting to grow again.

Looking back, and probably because of the side effects he's had, he wishes he had gone for the appointment with the oncologist.

It's worth knowing that hospitals have targets for cancer diagnosis and treatment. When a GP makes an urgent cancer referral, you must be seen within two weeks. Once you have a diagnosis, a treatment plan must be in place within 60 days. So the speed is normal.

Louise

User

Posted 28 Dec 2015 at 20:56

Thank you everyone.

The biopsy showed Gleason 7(4+3), 6/6 positive (90%) right side and negative left side. PNI right side. Tumour is v close to edge on right and as they've staged at T3a I assume they think it is locally advanced and beyond the capsule. Awaiting none scan in next two weeks. Next appt 14/1.

User

Posted 28 Dec 2015 at 20:58

Just to add, other half refuses to tell anyone or let me tell anyone. He also seems to not accept that he will need treatment. I'm finding this an added pressure.

User

Posted 28 Dec 2015 at 22:23

The camp is split to be honest from most people at the time ! Even though everyone has rread the toolkit literature , some attack it with the desire for full surgery, whilst some opti for RT and HT. And Braccy. A rare few leave alone and wait for the future. Whatever you pick tends to give between 5 and 10 yrs down the road In general,with differing side-Effects. But far more qualified people will comment
Chris x

User

Posted 28 Dec 2015 at 22:25

Hi Kate,

With regard to your last post, your husband's attitude is similar to a number of men being shell shocked on being diagnosed with PCa and having to come to terms with it. Men deal with it in different ways, often not wishing to discuss it even with partners, sometimes with the thought that they don't wish to cause additional worry to them. Yet this can be counterproductive because it may add to the concern of their partners and concern that the disease is being taken sufficiently seriously. You are in the best position to know how to get your husband to discuss his situation with you and when he feels he can do so break the news to others.

Your husband's Gleason and a confirmed T3A staging mean he is most likely to be offered treatment after all tests and scans have been done and other relevant factors taken into account. He is not obliged to undergo radical treatment but should realize if he opts for treatment soon before the cancer spreads, his chance of cure is improved. So learning about treatments now and their pros and cons would enable him to have a better understanding about these when his consultant discusses this with him.

If you could get him to read the well regarded 'Toolkit' available from the main part of this Charity site, it will provide a lot of helpful information.

Barry

User

Posted 28 Dec 2015 at 22:30

Hello Kate.

I would think personally that with the results your husband has been given it is unlikely he will not require treatment so I think he is in denial.
PSA between 6 & 7 isn't high but the fact that the first figure is 4+3, together with the staging makes it more serious, but there will be options available to him.

That won't make it easy for you, especially as he isn't letting you discuss it with anyone.

At least you have us so you are not entirely alone in this. We all know what it feels like.

This is a massive thing he is going through, and you too, so it's understandable that he just doesn't want to talk about it. Bear with him for now. Once the scan and the results are pout of the way it will all become more real to him. Just give him a little time. He is probably worried about surgery and the possible after effects.

Keep coming back to us and if we can help - we will.

All the best
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 28 Dec 2015 at 22:39

Hello Kate
I remember this time last year when I was diagnosed with a psa of 199 and waiting till January to see the Urologist to give me the results of all the scans etc.
I was in shock that this was all happening and couldn't believe I had PCa.
I was scared and weepy.
However it was Christmas and PCa had to take a back seat until January so I just bottled everything up.
I'm sure your OH is just the same and will open up as he begins to come terms with his situation and the holidays are over and the consultation is done
I know that then he will need you and it's obvious you want to be there to help.

I don't talk much about my condition either but I know my wife is always there when I need her.

This site is just excellent for support not just for us men but also for our ladies who have different but equally important worries.

Paul

User

Posted 28 Dec 2015 at 22:51

Hi Kate,

Sorry to hear your results. Just two things which may or may not help.

My father was diagnosed with locally advanced cancer 15 years ago age 61. He had RT followed by HT. He's alive, well and living a full life.

My husband was diagnosed 13 months ago with contAined cancer. He didn't want to discuss it with anyone until he had a full diagnosis and knew what he was going to do. Once he had surgery and had to deal with the after effects (continence issues and ED), there was no way he was using a ved. There was no way he was sticking needles in his bits. He's done both of these.

My husband is definitely a head in the sand sort of bloke. He leaves all the research to me. Maybe you have a similar husband?!

User

Posted 29 Dec 2015 at 05:11

hi kate

it will take awhile for your hubby to get his head round everything, when I got told had PCa my reaction was to hit it head on, still dont know if it made it easier

but I felt guilty to be putting my family through this, all sorts of issues will be in his head, all you can do at the moment is be their for him dont press him to hard. find out as much as you can or would like to know re PCa, my wife was opposite took a good month before reading the toolkit it was the first thing I sent for and I just left ot laying around till she was ready

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 02 Feb 2016 at 20:48

Thank you all for your support and advice.

Just an update following a few appointments in January. We saw the local team in Leicester and bone scan was thankfully clear. We've also seen Prof E [name edited out by Moderator] privately in London and he ruled out focal treatments as a DRE confirmed it is indeed T3a.

Other half is probably going to opt for RP at Leicester but we will see Mr A's [named edited out by moderator] team at UCLH next week, just for another opinion. Other half is discussing it with me at times but still hasn't told anyone else.

I've noticed from reading some old threads that there is frequent mention of Leicester and wondering what/why this is?

Thx Kate.

Edited by moderator 02 Feb 2016 at 21:08 | Reason: Not specified

User

Posted 02 Feb 2016 at 22:09

Kate

at least now you have a full diagnosis and your Husband can work out what he wants to do treatment wise.

It is not uncommon for Men not to want to talk about what is happening, even with those closest to them. It is something they have to have control of and deal with in their own time and manner.

Your post was moderated as you named the consultants you have seen, it is one of the very few rules on this site that you cannot name them in full ,most people just say Mr D or something like that.

You may have seen Leicester mentioned often because there is an annual gathering of a group of people all with a connection to PCa, you will see more about this in the coming months probably. I don't think there is anything more than that.

I hope all goes well with your next visit to the London specialist

best wishes

User

Posted 02 Feb 2016 at 22:12

Ah Kate

Mentions of Leicester here often mean the annual booze up held at the Mill on the Soar. A good time is had by all the attendees and a talk by an oncologist or urologist is usually scheduled. If you are interested in going watch out for the posts from George Hardy, who runs it. It really is good fun and not at all dreary or grim.

Lots of love

Devonmaid.

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