It's not looking good is it?

Hi Team

Updates and honest sharing.

We managed a couple of weeks not worrying or thinking about it but the time has come.  The appointment is in for first stage which is three months of hormone therapy.

My gut feeling, and honest response is repulsion.  I can't look into it because I am worried about reading the worst.  I am truly disturbed by my feelings about this, but this is what it is.  

Maybe I am just having a bad day, who knows.  

Hi Quitit23 - Thanks for posting - I know it's not easy but you know what they say - a problem shared and all that.

I have just re-read all of the posts and apologise that we have gone off topic a bit - however back to your situation - yes the diagnosis is a shock - the loss of dignity, is well awful - and the treatment - well at least it's started and Prostate Cancer is a slow growing cancer and it's been caught. Your other half is a Gleason 7 so it's not too bad - I am a Gleason 9 and 16 months down the line I feel amazing so there is hope.

Don't give up hope - we as a community - and I know I speak for everyone on here are behind you and will do anything to help - my personal offer is still there - if your or the other half want to speak off line drop me a friends request and we can have a chat about your fears.

We all have bad days - in the dark days I have cried, but there is hope and the kind folk on here have got me through those days - keep posting and let us know how it's going - you are not alone.

Kind regards - Brian.

Hello Quitit

sorry to hear of your misgivings about your husband’s treatment.I can reassure you that you are not alone. I hated the hormone therapy with a vengeance and was scared silly about the side effects of radiotherapy. I cried buckets! I was angry! I watched my husband age 10 years in 3 months of the hormone therapy and hated it ( not him) even more.  I also felt terribly lonely as my husband withdrew into himself and refused to talk about ‘things’.

so, the mri result came in September and HT started November. We are now April - radiotherapy finished on 4 th March. Both of us got very tired during the radiotherapy and I put this down to the travelling each day. I dared not let my husband drive through the city because he was so much ‘not with it’.  But….he has had no other side effects of the radiotherapy and seems to be better accommodating the hormone therapy! In fact, tortoise like, he has woken up from hibernation and is getting a newer ( albeit slower paced) zest for life as he pokes his head out of his protective, self imposed shell. The whole thing was not the ‘end of the world’ as I feared. We know we live with the risks of recurrence but we always knew he was living with the risk of cancer due to family history. We also know that if there is recurrence then there is a whole armoury of drugs out there to fall back on. We know, too, that he has another year of HT but that is keeping him safe. 

So, you can come through this. Your emotions are very raw right now but our brains eventually accommodate this unwelcome ‘twist’ in our lives and I think that, although it has given us a jolt, there is still a lot of living to be getting on with while we can.

I could say, ‘don’t worry’ but I know that where you are now is where I was last November, - March and it’s not a nice place to be. I’m sending you lots of hugs and encouragement and HOPE for some light at the end of the tunnel for you and your husband.

xx

Hi all,

finally do not feel alone with my worries and deepest fears.

My husband has metastatic prostate cancer, he is 46years old. He is just starting his second dose of chemo Tuesday to try and reduce the metastases. Scared of what the future will be and feel like I am grieving for the retirement or life we won’t have together. I know nothing is ever set in stone in life put at times feel under a very heavy boulder. Now planning a different future full of experiences and memory making for the children.

my best wishes with you all 

Quick answer it is 2 whole points above the nadir or benchmark, not 0.2

I have read all your posts and my heart goes out to you. I do feel all your crying is therapeutic, and nothing to be ashamed of. It is perfectly understandable. As for your husbands chosen route of hormone therapy and radiotherapy it will be designed to provide a cure not just a remission. I was diagnosed with prostate cancer early in 2015, with PSA of 41.7 and a Gleason score of 7(4+3). I was stage T3b, with spread to one of my seminal vesicles. Without going into all the details my PSA which had dropped very low started to rise nearly 2 years ago. A CT scan confirmed that the PC had spread to my right lung with 3 lung nodules being detected. So I am now stage T4. I started hormone treatment in the autumn of 2021 and then rather than start chemotherapy at the start of 2022 my oncologist and myself both agreed at the age of 79 and with covid still being rife I should start on Enzalutamide, a very special hormone tablet treatment, that is just as effective as chemotherapy. This brought my PSA down very low again, but in the last few months it has started to rise very slowly and if it gets between 2 an 4, the Enzalutamide will be stopped and I will be left on the hormone injections alone. Although chemo would be the next option because of my age, now 80, the oncologist and myself are both reluctant about it, as I would struggle with the side effects. It seems likely that I may be coming to the end of treatment options, but I am learning to live with that and accept it. Although my prognosis is not too good I know there are many men far worse. 

With your husband being younger, & as new treatments come out, I feel there is no reason why he should not live for very many years. If you have not already done so I would strongly recommend you ring the Prostate cancer uk helpline. You can google it. The nurses are wonderful and I have spoke to them countless times.

Hi everyone

I just think i needed to update and basically unload.

The hormone treatment start date is rushing up and honestly upto this point it was

up to this point, its been almost OK to pretend its not happening.

But as a wife, i am fully struggling with the idea of the hormone treatment and the impact.  I feel guilty that i feel this way, and cant get my head around it.

How do i feel? its like i feel sick, violated and disgusted.  I have searched these feelings and some come up but i am thinking i am in new teritory here with "disgusted"

Who do i feel this towards?  the medical profession for giving hormone therapy at all, my husband for having it and what he might be with the treatment, myself for feeling like i need to run.

Whats going on?  Do i feel like this because my marriage was essentially done before this, or do i feel like this because i am offended overall?  Does the idea of being in the same bed as a man who might have all the worst symtoms and side affects make me feel such revulsion because i am already checked out? I have already said i cant go to the appointments for hormone therapy becuase of the feelings i have towards it. 

I actually know that some might say "how dare she" "its not about her" "better have him cured" etc.  So this is my problem, is this really just pushing an already fragile relationship to the end or do i feel like this honestly because we have been together so long and were essentially one.

I just want someone to tell me why i feel like i can smell the cancer and its putrid, and why i feel like the hormone therapy is something that i am feeling so sick and repulsed about.  Why i cant accept it, and why i feel like no-one will understand the complexity of my feelings in this. 

I am so sad.

Hi Q, you are going throug a lot of emotions, have you tried counciling, I had it after I was diagnosed and it helped, just ring Macmillan helpline on the home page.

Short term hormone treatment doe's not give the same results of long term usage, and normal service can be resumed, please don't be scared and face it together, you won't stop worrying about side effects until you know exactly what is going on.

Hello again, I wondered last week how things were. And there you are, and its as I thought. Im surprised hes not on hormones therapy already?

You're in a difficult position, its no good people coming on and saying, you're in it together, give him support, you can work it out etc. This is the bit no one talks about because we all love a happy ending. But as we said before, its life changing and the younger you are, the more change it is. And those changes are (to me anyway), devastating. Add in the issues you talk about within your marriage, as you say...its not going to end well.

I'm now 10 months in, I think my wife sometimes (perhaps always), feels a bit like you. We were solid before this started, 10 months ago, so we don't have that complication, but I do sometimes think she feels the same about this, repulsed by the thought of any intimacy now. (Not that there is much at all now). And i struggle to accept there isn't any through no fault of her own. I'm sure many here think you are awful, They will say, you should be there for him, he needs you, read comments and its all about support, but that completely ignores your feelings and needs. 

I don't come here very often, and after my one and only interaction with this organisation, I decided never again, I cried out for help for my wife, but only got ignorant responses. (Not the forum, real people).

You are possibly frightened to be seen by family and friends as someone who abandoned him when he most needed you. But you have to make that choice, and it needs to be soon. Being brutaly honest, for me, so far its not been too bad. Yes uncomfortable, but once the invasive stuff is done, its now mainly fatigue and tiredness (and a few other side effects from the drugs, none unlivable). Planning holidays in August, I'm going to be around 60 - 70% of what I was, and I'm not dead! 

And if I were alone, id survive, but I point out I'm glad I'm not and I don't want to be! Together is best and we are best mates, love of my life. But sometimes its not possible. And that's ok, you can support from a different house, its just a different support. 

You don't ever say what hes thinking, I'm sure you have spoken, hes probably overcome with uncertainty, not knowing if hes going to be ok, generally he will, we all probably thought that at the initial diagnosis, but I see life carrying on just not like it was before, adjustments need to be made, but holidays, shopping, kids to school, driving, it all carries on. 

Tough decisions to be made, counseling will extend it for you, but the same things will still be there, I've never had any faith in someone making money from my misery so never ever been! And only strong people make tough decisions, but keep him in the loop, so there are no surprises. He deserves to know, and you need to support him if only from a distance.

We've all been programmed by Hollywood and TV etc that there is always a happy ending. Life isn't like that, but we can accept unhappy endings, it makes us understand and become stronger.

Unpopular opinion. It happens.