Newly diagnosed

We too are at the start of this journey, no diagnosis as yet, still going through tests but my partners PSA is 134. 

I have been reading loads on this forum, arming myself with information as no doubt my partner will struggle to take anything in if he does indeed have PC. You will get fantastic responses from people who will offer you advice. 

I wish you and your husband all the very best️

This is the first and best thing you’ve done in coming here for support and advice. You are among male and female friends here all going through similar life changing choices of treatments and quality of life.

Rome wasn’t built in a day and throw away any thoughts you had growing up thinking you will never have this Hobson’s choice.

Coming along soon will be a reply from our wonderful volunteers who can give you a more thorough and honest explanation of what happens next and what to ask at meetings and all the support available.

When you have particular questions, sing out and you will be heard.

I myself have had every thought your Husbands had and it’s a rollercoaster you’ve just stepped on. Hold on tightly to each other, find the love between you in every way possible but don’t let the couples decease break you apart. It’s not easy for you too. My Darling has been through the wringer but we are here to tell the tale and support others starting on this game changer called PC (Prostate Cancer).

Good luck to you both.

We can sympathise and help.

Hope and the NHS are what you need most.

Mr U & My Darling over and out. x

Hello Wayfarer 

A warm welcome to the group - although I am so sorry to find you here.  Hormone therapy/Radiotherapy isn't as bad as it sounds - you need a positive attitude, the support of your family and a belief that the treatment works.

Hormone Therapy (Chemical castration!) - Yes it has side effects, the main one being losing the ability to have an erection but not everyone gets every side effect. The second most common side effect is fatigue. keep as fit as possible and you will adjust to the "new normal".

Radiotherapy - Yes there can be side effects but it's come on in the last 5 years and it's more accurate and targeted that side effects if any are minimal.

Alongside the prescription for HT you need one for calcium/Vitamin D tablets as the HT can weaken your bone structure.

I've had 3 years HT/RT and as a couple me and Mrs M have become much closer (and we were close to start with). If you click on my user name or avatar you can read my journey - I have had a few issues along the way - but I am good.

I am quite happy to answer any questions you may have.

Best wishes - Brian.

Hi Wayferer ,

Had my Pet scan today ,  I would imagine myself and your Husband will be on a  similar journey with similar treatment.After reading posts and replies on this forum it certainly  helped myself and my Mrs have a more positive outlook.

all the best to u both

Mark.

Wayfarer,

My first message to you both is DON’T “live in total fear”. Your OH’s diagnosis is very similar to mine when I started on this 15 months ago.

My treatment plan is the same as yours appears to be. The only problem I had was that the first hospital I was referred to for radiotherapy refused to treat me because I have two replacement hips. This meant me having to do a 90 mile round trip every day by train/bus to another hospital. Looking back at what has happened - I am so, so glad I ended up at the more distant hospital. The quality of the staff and the bang up to date radiotherapy hardware and software they were using were brilliant.

www.bbc.co.uk/.../uk-england-hampshire-68688198

I have had few adverse side effects from either the hormones or the radiotherapy. The one or two slight “upsets” could equally have been caused by the stress of the daily train travel or the previous night’s curry.

My original 3 years of hormone treatment has already been reduced to 2 years. My PSA is down to 0.05 (from 16). I have put a bit of weight on, I do feel a bit more weary……….but I am pushing 80 !

Just because a few people on this site have had problems with side effects doesn’t mean that you will. Lots of people have absolutely no problems and therefore don’t recount their stories on here. If you do have problems ask your medical team and ask about it on here.

Also, the scans you have for the Prostate will sometime pick up other things that you didn’t know about. I have two benign tumours on my spine that I didn’t know about and they accepted my story that the dent in my skull was caused by me standing up under an open kitchen cupboard door when feeding the cat ! It certainly showed that they were doing their job properly…….

As I said at the beginning ….don’t worry !!

We can all tell you what treatment was like for us, but unfortunately nobody can tell you what it will be like for your husband.

I had 20 sessions of RT in March, and if his experience is to be anything like mine you have nothing to fear. The treatment itself is only a few minutes long each day, and while some don't like the idea of giving themselves an enema before each visit, it's something you soon get use to. It did play havoc with my bladder activity, especially at night (never incontinent, but sometimes mild discomfort), but that all cleared up a week after treatment finished. 

Between RT and HT I never had a big issue with erectile dysfunction. For me it wasn't a case of can't get an erection, more a case of can't be bothered to.

Has your hubby had a DRE yet. I was lying on the couch being examined when the consultant said 'Hmmm, this doesn't feel quite right'. I remember thinking 'you're preaching to the converted there pal'

Welcome.

You are in the worst stage of all this. I can tell you, though, that despite the fact that you are ALMOST certain to get some side effects, you are highly unlikely to get them all.

I have been on hormone therapy for a year. I had 37 fractions (daily doses) of radiotherapy. It is likely that I have another 2 years of hormones

Have I had side effects?

Yes - fatigue, doubled during the radiotherapy. Loss of libido and erectile dysfunction from the hormone therapy, yes. Hot flushes - oh yes. Not much more than that.

So, a year in, how I feel?

Pretty good actually. My wife has been enormously supportive and we have become closer.

We have worked a short nap into our day.

Open sex has been replaced by Hugs and cuddles. To my surprise we are much closer.

We laugh at the hot flushes. I don't take anything to prevent them, counting each one as a step to victory.

In fact, the recurrence of a quite severe back problem during the radiotherapy (nothing to do with the radiotherapy) has been a much bigger immediate problem than the prostate cancer.

When a treatment plan has been agreed and you can look past this moment you can make a choice - get beaten down, or get up and go own.

Given that severe side effects are quite rare, keeping on is an easy choice to make.

Hello Wayfarer

As others have said, welcome to the place no one wants to be, sorry to see you here and to read your story.  Brian always gives great advice as do plenty of others.  I've just finished my own treatment and you can read my journey in my profile.  I would urge you to read what you can from both Macmillan and Cancer UK, but the best people to ask are your cancer nurses at the hospital.  Your oncologist will talk through the treatment options.  This forum is a great place to bounce ideas around, ask that odd question you forgot to ask.  Between us, we have probably had all the forms of treatment and are happy to explain how we were affected  by them, but here's something you'll hear time and again, we're all different and react differently. 

For myself, I feel a bit of a fraud when I visit my clients (I'm a Macmillan benefit Caseworker).  I had no major reactions to my treatments at all. ED? Yep, what do you expect with no testosterone?, my wife says it doesnt matter, the doc tells me there are little blue pills....  Hot flushes? yep, - get on with it, Tiredness? - yep, quick nap.  That's it, that's my lot.  I see many men with worse.  We're all different, I was lucky.  Have a positive attitude, don't worry over the unknown, it won't help or more importantly change anything, arm yourself with information, not worries.  Good luck with the treatment and keep us updated.