Can't sleep for worry

Hi Joe

I think it's the unknown that is causing your fear - certainly was when I was diagnosed. The other thing is, perhaps, being bombarded with too much information, without knowing what the hospitals take on you is.

The stats you have shared, appear good, so surgery looks possible. That said, it's your body and your decision. If you don't fancy the option offered, don't be afraid to ask what the others are. I understand HT/RT has similar outcomes without the side effects of surgery. HT/RT does, of course, have its own side effects, which you will need to get your head around. Being nudged, I guess is fine, but watch out for surgeons recommending surgery and nuclear consultants recommending RT!     ( Call me a cynic if you like!).

Please let us know the results of the MRI scan when you have them and I'm sure we can help.

Regards

Stuart

Hi Joe - A warm welcome to the club you didn't want to join.

First of all just let me say that this cancer messes with your emotions and it's normal to feel as you do and it's not a problem "blubbing" as you say here - we've all been through the "why me" stage.

Let me say from the outset I suffered from urine retention and my PSA on diagnosis was 182 and 21 months from diagnosis I am fine - as I write this I am enjoying a normal holiday sat in the sun - an almost full recovery is possible!!

So - some facts - your PSA isn't too high, you haven't had an MRI scan or a biopsy so we haven't yet got a full diagnosis but we know that you have both urine retention and Prostate Cancer. On the information you have given you are a candidate for three routes, surgery, brachytherapy and or HT/RT.

In your shoes I would be thinking yes I need to be treated, which route is the best for me - explore each route - read people's cancer journey's and write a list of pros and cons for each treatment (don't use Mr Google for research as you can't be too sure where the information is from). 

For research you have our site (Cancer info and support at the top of the page) - Prostate Cancer UK - and all of our members of the forum. I will start you off with the HT/RT journey - if you click on the icon of the beach you can follow my journey from early symptoms to today.

As Scampidoodle says above - beware of consultants trying to "sell" their trade. As for ED yes it's there - I am married but we show affection in plenty of other ways!!

I hope this helps a little - If you have any questions however trivial you think they are ask away, you will get an answer - we aren't a bad bunch and are happy to help.

Best wishes - Brian.

Hi Joe.

You haven't had your MRI results yet so have your appointment and see what they say, may not be cancer.

Your PSA is not particularly high so even if it is cancer it is probably easily treatable.

You certainly don't have to have surgery, RT should do away with major issues u get with surgery, ED and urinary issues.

Come back when u have your MRI details and we can give you more advice

Best wishes

Steve 

Thanks everyone for the words of encouragement and advice.  I've been blubbing again, especially with kind words you've written...why is that??  I'm pretty tired...didn't sleep much.  You know I said I skipped details, here's a few.  Sorry for the short novel in advance - it kind of helps to put it all down.  This isn't my first rodeo - although I haven't really posted much before.  I had been on Active Surveillance for about a year and a half, motoring along nicely.  My PSA was between 8 and 15, 7 Gleason.  I had a large prostate - not off the charts but about 85gs.  Lots of urgency problems but nothing I couldn't handle.  I had a MRI as part of my regular check up - this was May '22.  My PSA increased a bit, 9.8.  There was an area of suspicion on the MRI, so I was given the choice of surgery or a biopsy and then make a decision.  The surgeon - one I had never met before - was gently 'pushing' for surgery.  I decided to biopsy first, then decision.  The first biopsy I had was a walk in the park.  Hardly any pain at all and no side effects.  This time was night and day different.  Good news: the area of suspicion was benign and no new lesions.  Bad side effects, though.  I went into A&E that night with AUR - I've never had that kind of pain before.  And being cathed in A&E with curtains swishing about and people coming and going was the worse invasion of privacy I had known - to that point anyway.  After they put the Foley in, I was relieved but then bladder spasms started.  I never had this before, but my god they hurt and as soon as one subsided a few minutes later another would begin.  Regardless of the agony I was in, A&E sent me home with some co-codamol and told me to call my GP on Monday - this was about 2 am on Saturday!  Anyway, long story short, I ended up in hospital for 3 days, receiving antibodics and IV pain relief.  They removed the Foley sent me home with the gear for daily self catherization; back a week later with AUR again, this time Prostatitis.  Over night for IV antibiotics and this time the foley in for 2 1/2 weeks.  It was the most awful 2.5 weeks I have ever had.  Steep learning curve for catheter care.  Didn't sleep well.  Super painful, especially bladder spasms.  Real 'grip the wall' stuff.  Couldn't really walk any distance - 100 metres was a marathon.  Then A UTI with a temp spike - 5 hours sitting a hard plastic chair in A&E waiting to be seen.  This really was awful.  Eventually the 2.5 weeks ended, TWOC was successful, but I had to self catheterise at least once a day, sometimes twice.  Good news, this bumped me up the list for HoLEP, which was an overnight miracle after 9 months of hell.  All symptoms of an enlarged prostate literally gone in 24 hours.  NO side effects, except some leakage which has all but gone.  My PSA dropped to 2.9, which is fine for a normal man.  So a jump to 3.8 is percentage a big jump.  Here's the deal: I am the 1 in 2; the 1 in 8; the less that 1% who has AUR after a biopsy; the 3% who get prostatitis; the 2.5% who get UTI during self catheterisation...that's what I mean when I say I just don't feel lucky.  (Really big sigh).  It's just a waiting game now.  But you all have been here too, I know.  I'm trying to be optimistic, but I'm knackered physically and mentally.  Really low at the moment.  Thanks for your support.  It really helps.

so , you have had a few other things to contend with apart from the PC Joe so not surprising you're stressed out.

but the stats u have given are low so time is on your side.

One other thing, please bear in mind that if you are seeing a surgeon then fairly obviously, I suppose, he will try and push u into surgery but as u have got time make sure u take a look at RT as well 

a simpler form of treatment in some ways.

all the best

Steve

Hello Joe - well that's some journey you have been on - and I can fully understand where you are with all this activity and no positive results.

May I ask - you don't have to reply - are you resident in the UK or overseas as some of the terminology you use is American - and I was going to suggest a couple of things to you but they are only available in the UK - that's not to say you are not welcome on here it's just not practical for me to suggest attending somewhere in the UK if you aren't here!!

The positives are still a low PSA level and so very much treatable and I still think my ideas in my original post stand. Look at the treatment options - see which suits your personal circumstances and then push for which ever path you want to go with.

You have plenty of time - it's on your side with a slow growing cancer - but feeling as you do I think some pro-active choices have to be made and followed up for you peace of mind.

I hope this helps - let me know what you think.

Best wishes - Brian.

I'm a dual citizen, Brian, US & UK.  Hong Kong first, then London, since '86.  I could never go back to the States - too many Americans!  Guns and crazy-assed politics.  No place for old men and children - or anyone in between.  I'm unsure how PSA is an indicator now...the laser surgery cut out  60% of my prostate.  Histology came back benign, which means they didn't actually get the lesion.  HoLEP is not a curative procedure, well, not curative for cancer but it does sort out Prostate Hyperplasia.  The idea was to establish a new baseline and carry on with Active Surveillance.  I would have my check up now, an MRI in May and then going to annual checks.  However, I fear that the MRI came up with changes that warrant more treatment - perhaps something more definitive.  I'm exhausted now.  Hoping to sleep some tonight.  Just lots to get my head around.  Thanks for your support!

Hello Joe - and thanks for your response. Your's is an interesting one, I have not come across something like this before and as a layman have to "best guess" what's going on.

The HoLEP is almost the same as a TURP operation where some but not all of the prostate is removed - in my case with the TURP I have no idea how much was removed but they called the removed pieces "chips". I assume you will still have a PSA reading as 40% of the Prostate is still there along with the "Prostate Bed".

In your original post you said you were feeling "low" with all the issues around the possible diagnosis and for a little extra support for you may I suggest:

* You visit the nearest "Maggie's" centre - These are relaxing places where you can talk over your issues with someone over a cup of coffee/tea. You can find your nearest centre by using "Mr Google".

* MacMillan's offer a service called MacMillan buddies where you will be allocated a buddy to either call you or visit you once a week for support - details can be found here:

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-buddies

* At any time you feel you need some extra support or just want to talk to someone our support line on 0808 808 00 00 is open 8am - 8pm 7 days a week. There are some fantastic people on the end of the line with plenty of extra help.

As I said in my original post, feel free to post on here and you will get a reply - we are a good bunch although with this cancer you do need a sense of humour!

Oh and as a final comment I agree 100% on what you have said about America - I've been once for 3 weeks - never again!!

Best wishes - Brian.

Hello Joe, sorry to hear of your troubles - both physically and mentally. You certainly seem to have more than your fair share!  Waiting for results is a horrible time and, as an insomniac, I know how debilitating lack of sleep can be! 

I might have missed the detail, but my understanding is that you are waiting for MRI results. Do you have a date for this? If th hospital have the results then your GP should be able to get them from the hospital for you ( our GP did this when we requested) you could reinforce your request with the GP by stressing the adverse impact of ‘not knowing’ on your mental health? ( we did that too!) the downside is that my husband was delivered the results over the telephone - not easy!

I hope your fears are unfounded but, if it does turn out to be prostate cancer then please know that there are good chances of complete cure or very successful control.

Thanks very much your your response and support.  I do have PC and have been on active surveillance for some time now.  In fact, I was diagnosed during the pandemic, and the results were delivered over the phone.  I can sympathise with your situation with your husband.  At that time, the urologist recommended a radical proctectomy.  It was quite a blow.  They were going to move very fast, with a surgery date the following week.  Then something very strange happened...I got a call a few days later saying that the urology group had met and that with a Gleason score of 7, and moderate risk, they changed their recommended to active surveillance.  I was so happy at the time that I virtually forgot about three sleepless night!

It's the recent test that have me worried.  Your point about talking to my GP is a good one, though.  It will help to have a few facts before I meet the urologist. I've also been reading up on alternatives to surgery.  I'm only 62 and honestly don't think I could cope with permanent incontinence, let alone ED.  The good news is I slept through straight through last night.

The thing is, when you get those 'midnight' panics, it's very hard to be alone.  I can't wake my wife...what's the point in both of us worrying?  I'm feeling a little more calm now.  Hopefully I can maintain it.  Thanks again for your support.