What a 28 days that’s been - Just diagnosed

Hi John, sorry you’re finding yourself here.  For us personally you’re at what was the hardest stage. You’re dealing with the shock of diagnosis, you’re uncertain of the extent while waiting on results and you don’t know what lies ahead.  Once we had a treatment plan in place we felt better.

Do you know you can access one of the nurse specialists for a chat either on the phone or online chat via main page? Also type “toolkit” into the search bar on that same front page for lots of really helpful information.

We chose to wait to tell our family until we had all the results as we wanted to be able to give them as much detail and what was planned but there’s no right or wrong. Our children are adults however.

My husband had his surgery in July ‘20.

Sending best wishes to you.

Hi John,

I am a little further on than you, but not yet had op so can't advise there.

However what I can say is my experience so far.

The wouldn't be offering you surgery if they thought it had spread, surgery is only applicable is it is contained or only just outside.

My consultant told me that if I don't currently have urinary problems, it is unlikely that I will have them long term afterwards.

They will remove the whole thing , but will spare nerves if possible (you have 2 bundles and are related to sexual performance)

I decided to go the surgical route as it seemed more clinical and you have a good idea at each stage where you stand (radiotherapy seemed to take a long time to be sure)

It was about this stage I told people, when it is clear you need something done, and I am sure they will start to notice something is not right.

Hello John,

Sorry for what you're going through.

Telling people is an interesting one. My diagnosis took about 6 months, and I decided not to tell anyone until I knew what the prognosis was. I couldn't see the point saying I had cancer and not being able to say if I was about to die or not. (OK, it doesn't work like that, but I was new to this.) I was OK emotionally dealing with it myself, but I didn't have the emotional reserve to handling someone else breaking down on me, which would likely pull me down too. This is perhaps unusual - most people will want the support of a partner, but I'm single. I know this was right for me, because I did tell my extended family including my parents when I thought I'd had my final diagnosis, only for the doctors to become less certain and more tests, and then I had the family calling up just after my appointments before I'd even digested the news myself, and that didn't work for me. I would perhaps have preferred not to tell my parents at all, but I'm their carer, and I couldn't hide periods of treatment from them.

At each point when I did tell someone, I made sure I did have the emotional reserve to deal with their reaction if necessary - that gets easier as you progress through time. Part of that is also having the answer ready for any questions they come up with, although adults are usually too stunned to ask anything at the time. Telling people is not a once-off event though - they will think about it after you told them, and a load of questions may come up then, so I made it clear I was OK to talk about it by bringing it up from time to time, to open up any necessary conversations and answer questions. By this point, I was pretty emotionally stable about it, but kept it to family and support groups, and a few close friends.

When I completed my radical treatment, I went open about it on Facebook, because I figured saying to more distant people that I had cancer and was just treated for it would be less of an emotional load on them than doing so earlier when I hadn't been treated. Most people were fine with it and incredibly supportive. Some 18 months later, I've got some feedback on that, and I know a couple of friends were knocked quite hard by it, one I knew very well, and one I didn't really know well other than through my work and we'd never even met, but I think I got this just about right. I'm now very open about it because I engage in awareness publicly, and I do talks where I'm very open about the effects it had on me. This is where I wanted to get to, but it takes time, probably 2 years from diagnosis in my case to be fully open publicly. That's not to say everyone wants to, or needs to, get to this point.

Children add another dimension. I think your scope for hiding something like this from them is very limited. They will pick up that something is wrong, and if no one will talk about it, they can think it's their fault, or their parents may be splitting up, or a whole load of other things. Macmillan have good information on how to tell children at different ages, and what they will understand.

Talking to Children and Teenagers
(Unfortunately, Riprap, the teenager's forum which this refers to, was defunct when I looked a while back.)

There's a free Macmillan book available from most hospital cancer centres, and the PDF is available here:

Talking to Children and Teenagers when an Adult has Cancer

Wishing you all the best.

Edited by member 03 Feb 2021 at 08:56  | Reason: Not specified

Hi John - my husband was diagnosed in March 2020 just as we went into lockdown. He didn’t tell anyone for a few weeks until he knew exactly what the situation was and until we’d sort of got our heads around it.

Everyone inevitably asks questions when you tell them. What was hard for us is that the reaction was generally that they’d heard pca was very treatable - and thank god in most people’s cases it is - but we then had the awkward follow up that it wasn’t in his case and had spread and was the worst type (g10). I think that’s why assimilating the news ourselves beforehand was so helpful. 

We told close family first including our teenagers. My husband just said to the kids they said I’ve got cancer and are treating me. We waited a couple of months later to tell them he can’t be cured. I think it would have been too much all in one go. 

As for friends, my husband has been very open with them and he’s lucky to have some great mates who I know will help him through this. For what it’s worth my husband would rather chat about what’s happening in day to day conversation rather than it be the elephant in the room. 

Good luck. X

You will feel a bit more settled when you get your full diagnosis. You get all your ducks in a row as it were. You will get a T number which your surgeon thinks maybe T2. We had a bone scan after the biopsy, not they were expecting to find anything...( Psa of 3 )

but it was protocol to do it. Once that's done you will have your full diagnosis. T number...then an M number (metastatic) which hopefully will be 0. Then a N number (Lymph node) which will also hopefully be 0, The biopsy will give you a Gleason score which will indicate aggressiveness. Although a lot of places don't bother with Gleason and just give a grade number.

It's a lot to take in.

The thing that will help you most is time...you are in shock at the moment and still at the stage of waking up in the night worrying. You wake up and in the briefest of seconds, know something is wrong but can't place what.Then it hits you...and sleeps gone for a hours.This passes too.

Then you have to choose RT or RP. Thats a whole new ball game. It's good that surgery is on the cards. OH had surgery and it was fine, just a few minor problems. He was a T 3 but it had only just broken the surface. Nodes and seminals clear. If there is spread probably they will push you towards RT but if its contained or only just popped out with no spread, the surgeon will take it out and take some tissue round it to hopefully get you clear margins.

We have no regrets about out surgery but there are plenty of posts on here where men are doing their best to choose what's right for them.

But don't get too far ahead of yourself, wait for your full diagnosis and take it a step at a time. If you think too much about the future it's easy to start catastrophizing and you'll end up planning your own funeral.

Let us know what the scores on the doors are, when they come in.

Good luck and take care

LW

John,

Difficult decision. Some things to think about.

If sex is important to you, I would ask the surgeon what the chances of nerve sparing are (retaining erectile function afterwards). Radiotherapy is less likely to cause erectile dysfunction at the time, but there's a chance it will happen later.

I always suggest patients considering surgery ask about having Retzius sparing surgery, which currently accounts for less than 5% of prostatectomies. It gives faster return of continence and erections, and some people say a reduced chance of incontinence and ED in the longer term.

You are quite young, which brings two things to mind...

You need a long remission time. It's often said one advantage of surgery is that if you get recurrence, you can then have radiotherapy afterwards. I believe this view to be somewhat misguided, but there's one exception in my mind, and that's where you are particularly young and need a long remission time, and then two bites at the cherry might just come in handy to give you two long remission times.

Radiotherapy can bring problems later, both a chance of another cancer, and of late onset side effects. Having that when young gives a higher chance of such problems happening over the longer remaining lifetime.

You haven't given your Gleason score. The T3a makes you high risk on one account. Your PSA isn't high risk. Gleason would make you high risk on two accounts if >= 8. The more high risk factors, the more likely a prostatectomy is to fail and need followup radiotherapy soon afterwards. (This is a very crude estimate.)

Having a prostatectomy now, and in the event of recurrence some time later, you may have better treatment options for that than exist today. Also, if you had radiotherapy later, the length of time for any late onset side effects during your lifetime will be reduced.

Do bare in mind that if your hospital can't offer a treatment you want, you can be referred to any other NHS hospital in England - you shouldn't feel limited to just those treatments offered by your hospital.

Edited by member 09 Feb 2021 at 23:51  | Reason: Not specified

John

If you have private then ask your oncologist if Proton Beam Therapy is an option.  www.therutherford.com/treatments/proton-beam-therapy/

I have just over a week ago finished the treatment so its way too early to tell how succesful this has been but I'm told its the Rolls Royce of the Radiotherapy world and this is just as effective if not more than surgery.    I have so far had little to no side effects apart from discomfort peeing and an urgency to go which 4 days after the treatment has already subsided and I'm not even getting up during the night.    My PSA will be rechecked in 6 weeks.    I just could not recomend enough the level of care that the Rutherford in the North East has delivered and each visit (I had 7 Fractions every other day) was nothing that I dreaded.   I'm not sure how ED will effect me and as I said its too early but I know that I do have sensation already.

I'm sure that I read somewhere that this in years to come will replace surgery and my oncologist told me that the success rate in my case would be just as good as surgery.    I almost feel a fraud in that here I am being told one minute  I have  prostate cancer  that needs medical intervention and now I'm through treatment and to be honest I have very little side effects and nothing unpleasant has happened.

Take care and all the very best

He was of the same mind, just wanting to be free of cancer and sod the side effects. His attitude is still the same now. Urinary continence is getting better all the time and now he is pad free except when he worries he's going to get stuck without a toilet but it's really just a confidence thing. But even when he was still using pads all day, he said, if this is what I have to put up with for ever, then it's a small price to pay. But as I say, he's now pad free. He also supports the saying....there's no sex in graveyards. So for him he has brushed them off easily. Not all men feel like this, this is why it's,such a personal journey.

Very important if you go for surgery, is your choice of surgeon. You can use the BAUS website and check what your local surgeon is like. You need a high volume one, 100 per year and one that also does a fair amount of T3s. You don't want one who specialises in T1 or T2 and doesn't touch 3s. Our surgeons greatest percentage of work is with T3 so we felt confident going in.

Within 6 weeks you will know whether the surgery has been an success, in the form of undetectable PSA ( of course you have to join the 3 monthly stress we all 'enjoy' of subsequent tests.

Also you get the histology result, which tells you exactly what you had inside you. Some men are bang on the same as the biopsy, some are upgraded and a few are downgraded.

I am not an advocate of one treatment over another. This was just our path but it's been ok so far. Today he was re roofing a 10m kennel hauling heavy duty tarp about, so life does go on.

If the biopsy cores were taken from the area that was causing concern on the mpMRI, and they have all come back clear, then it seems safe to assume that you do not have cancer - or if you do, it is small and certainly not as extensive as you feared. Once the shock has worn off, you will hopefully feel able to celebrate being the 3rd person on here in a short period of time to get a PI-RADS 5 and then the all clear. You will certainly be aware now of the importance of annual PSA monitoring!

Chris

Hi John,

Good news. Incidentally I was made aware after my biopsy, ..prostatic calculi.

Never heard of them at the time, and the person said, maybe inflammation and prostatitis.   I never had any Pirad info, my op was 6 years ago.  These deposits are only rice grain sized it seems yet can cluster.  I never had any symptoms.  It seems they can cause dull perineum pain, again inflammation etc..  I believe you should be able to request digital images, maybe have to pay. You would then need obviously someone to interpret.  At least you have a PSA baseline.

Regards Gordon

Best wishes,

Chris

JOHN - it is hard to eat cheese cake when your told it is fruit cake but just listen the Dr’s and go with the flow.  Get the PSA checked regularly and SMILE....... you are ok.

Great news and I hope it continues to be nothing and all clear.   

Now live life to the full and enjoy........ :-)

But please keep in touch touch and let us know how you get on.

My heart genuinely goes out to each and every one of you,

I’m one of the lucky ones,for now I have been told I need my PSA checked every 3 months to monitor why it’s raised and make sure there are no changes.

I will be raising money by walking 11,000 steps a day in March and will also be doing ‘Run April’.

I feel like I’ve dodged a bullet for now but have also experienced some of the trauma you have all been put through by this vial condition.