I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Bladder neck involvement

Email this conversation Print this conversation

User

Posted 13 Jun 2016 at 13:50

Hi I'm new on this site and have a couple of questions. I'd like a response from someone who may have had this or know what the outcomes are for this my husband had his prostate removed nearly four years ago it had escaped the capsule so wasn't nerve sparing followed by radium treatment 1 month but psa didn't go to 0 and although he had a Gleason 8 and we have been told its aggressive it has grown extremely slowly 1.4 psa after 4 years so we lived in hope that it just wasn't as aggressive as they first thought . a couple of months ago he had a pet scan and they found something in the neck of his bladder after several meetings they decided he must start hormone treatment immediately so my question does this sound aggressive? Are they been over cautious, it's what I can gather to be the reason he didn't get an all clear originally that's were it was hiding and is still microscopic. it's been difficult to adjust to life with a pump for sex and now his sex drive will diminish completely and this isn't about me but him, he's depressed already and only been on the hormones two weeks. will the cancer in his bladder spread if he doesn't have hormone treatment ? Had any one had a different treatment for this ? We have kept busy up to now but he just doesn't seem Interested in very much , and when I suggest we get some one in to help him he's building in the garden he gets upset so I've just resigned my self than nothing much is going to happen. Yet the past few years he's worked tirelessly to alter the whole garden. I read as much about prostate cancer as I can, but don't ask many questions at hospital because don't think he wants to hear the answers . up to now we have both lived with the changes very positively but I fear I'm losing him emotionally. And how do I support him ? I'm lost. He's 59 so still a young man .

User

Posted 13 Jun 2016 at 16:01

Hello Ella and welcome to the site.

I cannot help with the basics of your enquiry but I do know that there are others on here with the appropriate experience so hang in there until one of them replies.

There is no simple answer to your fear of losing him emotionally. Support him? Well all you can do is be there. There is a lot for him to take in at the moment and many things will be running through his head, so it isn't surprising that he cannot focus on finishing the jobs he's started. Perhaps he's thinking "Why bother".

If I were in your shoes I wouldn't push too much about any of it, let him come to it in his own time. I know that's hard to do and I speak as another wife, one with a husband who doesn't say much about how he feels.

You are already supporting him (and have been since diagnosis) as much as you can and I am sure that he really does appreciate that.

If you don't ask questions at the hospital then you (he) can't make informed decisions about the best treatment. There is no forcing that issue though because unless he asks the doctor may not give you the information. I tend to sit there quietly letting the doctor do all the talking and jump in quick with my question before we leave. !! We are fortunate though not to be going down the HT route so I don't have to put up with the extra emotions this treatment causes.

Please be patient until one of the others pop up as I am sure they will.

We are here and you've found us so that's good

All the best

Sandra

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

User

Posted 13 Jun 2016 at 16:05

Duplicated the entry.

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

User

Posted 13 Jun 2016 at 17:56

Hello Ella
Despite a rapidly rising PSA my cancer was very hard to find. It was high and blind to the scans and attached to the bladder neck. I had radical prostatectomy and some bladder resectioning. Five lymph nodes were cancerous also. My post op PSA was 1.5 rising quickly to 2.4. My urologist said on hindsight that he wished he had removed the bladder entirely. However a PET scan after the op didn't show hot spots anywhere strangely , leading them to believe I have lots of micro spread. I've been on HT for 8 months and am not on a curative path anymore. I'm 49.
We too are suffering badly with a range of emotions and cycling between good and bad months really. The ED thing is crippling but we are working hard at that and getting results. It's so important if you can to talk. To really try and talk things through as it's such a long journey it seems , and you both need each other. I'm very demoralized at the moment. I guess it depends what type of person you are. I was always glass half empty so this has kind of tipped me over the edge. Every now and again I get really busy and feel better.
Wishing you the best
Chris

User

Posted 13 Jun 2016 at 18:43

Hi Ella

If not already the potential to become aggressive is there. If my G8 decides to wake up with spread into bones I would be tempted to wait provided the rate of PSA incease wasn't too high. However with bladder neck involvement I wouldn't hesitate to go back on HT or other drug treatment as to me that would be the only realistic option.

This might help understand your OH attitude to projects.. Doing another refurb which brings the continual mind conflict. You think in the real world I will be back on HT at some point set against yes but not yet so you start a project. Then when you do start the HT threat looms in your head so you work hard to get it finished. I also feel ED plays a part as doing a project brings the I'm still a man (in part) feeling.

Good luck

Ray

User

Posted 13 Jun 2016 at 22:40

Thanks I think I get desperate to, the garden was a plan to have a nice space when he wasn't well
He's build a Hugh shed man space but it's not finished and raised beds levelled it all out for wheel chair use but just after my outpouring today on here he got up and did a bit in the kitchen , which is being revamped his other love cooking, I want to
Pay someone to do the heavy work but he's not having it so your probably right I'll
Leave it I am going to ask if he can have this treatment intermittently to give him a break and I think next year we'll get a camper and go off travelling , think we're in shock we were told a month ago he didn't need hormone treatment then a phone call telling us he had to start immediately tablets and injections at GP , who couldn't fit us in so we haven't seen any one , I
Just needed to blurt it all out we have handled all of it brilliantly I've had real ill health this passed year and we manage to
Joke about what we're turning in to a couple
Of years ago we were both super fit and now we're eying up mobile scooters . Thanks again I'll re read your messages tomorrow I'm shatters now

User

Posted 14 Jun 2016 at 00:17

Hi Ella,
the short answer is yes the cancer will continue to spread if he doesn't have the hormone treatment. It wil be worthg checking though whether the intention is to have hormones just for a while, combined with radiotherapy, or whether they think he has advanced spread and is on the hormones for life now. Could you phone his nurse specialist and ask? Or perhaps they will have written to your GP outlining the treatment plan? Either way, intermittent HT will only be offered if his PSA goes right down and then stays there for a good while.

The most worrying thing about your post was the comment about the GP not being able to fit him in. I had to read it twice to believe it :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Jun 2016 at 09:34

When I had GP issues the CNS agreed to administer Zoladex provided I got the prescription from my GP and collected it from local pharmacy(ie not hospital)

Ray

User

Posted 14 Jun 2016 at 19:20

Thank you all it seems mad to be talking about a garden( strange what you focus on)but he's been so keen and driven and just stopped, the cancer has just not risen its head in our lives he didn't want to talk about It so we didn't, I do ask him but don't push, but going on hormones has been a kick in the teeth so as to speak , he's been quite high and very low within minutes of each other, he was determined to hang out to the last, re hormones, and I feel so bad for him, he has cracked a few jokes with mates saying I won't be coming out cause I'm going to spend all night internet shopping but I know him well enough to know it's scary stuff.
can I ask re those who are on HT how long before it takes affect? Is he feeling the full affect yet he had two weeks of tablets and one injection or is it something that builds up in your system, there is a lot wrote about side effects but not when you can expect them to arrive days weeks months at the moment he doesn't seem to have many dry skin got a Hugh spot/ boil on back and highs and lows but this could be cause his minds in crisis, and he's run down and yes I was in shock that the go couldn't make time, but that's the world we live in , waiting in the gps with him a while a go I heard the receptionist telling an elderly genteel man his test was back and yes he had cancer, he asked what was he to do and she calmly said make an appointment but their wasn't one for weeks I reported her to the g.p. we were going to see I was horrified .

User

Posted 14 Jun 2016 at 20:50

Good grief Ella! That's in relation to the discussion by the receptionist with the poor man. I simply can't believe that such a conversation could be held in public.

Regarding side effects I suppose it depends on how quickly the testosterone is reduced. I can barely remember as my hubby went on HT over five years ago. Hot flushes, tiredness and fatigue seems to be pretty usual, but fatigue levels seem to vary a lot. They hit my hubby right away and like a ton of bricks. He's used to it now and adopted graded activity to help and it works. The hot flushes stopped a good while ago too. I always think of it as being a new normal for us, you can't really fight it but just adapt.

Having a husband with invasion into the bladder I think HT is a must, my hubby has had a tough 18 months or more as the tumour in his Prostate has pressed further into the bladder, urethra and kidneys. So anything that halts that profession is preferable to what the outcome of unrestrained cancer in the area would be. I know it's hard to cope with, but I really do think we all have to try to enjoy our lives as much as we can and lean on the members of this forum for support when things get too much. You can also speak to the nurses on the helpline here, Macmillan nurses and Maggies centres if you have one.

With love
Devonmaid xx

User

Posted 14 Jun 2016 at 21:36

Ella

As you may have gathered the intensity of side effects vary. For myself: ED was within a week: Hot Flushes of note within 2 weeks:

Fatigue within a month intensifying a few weeks after RT. Circa 12 months on ED and Hot Flushes remained at the same level but fatigue was less. The same theme continued for the following years.

Keep in mind some guys do Ok.

Ray

Edited by member 14 Jun 2016 at 21:38 | Reason: Not specified

User

Posted 14 Jun 2016 at 22:28

Again thanks now I know what to look out for, so easy does it till he adapts, till we adapt to these new side effects , it's helped lmore than you'll know fear is a funny emotion when your normally the strong one

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.