New and scared for my husband - results of routine test

Hello HappyRose . Firstly welcome and yes you did right to be proactive even if it is just to find out if there is or is not a problem. The PSA is high for your husband's age but that does not automatically mean he has cancer as there are benign reasons for it to be elevated as well including an enlarged prostate (BHP), ejaculation within a couple of days of the test, riding a bike, urine infection and prostatitis. The first thing the doctor might do is a DRE (finger up the bum) to feel if it is soft or hard and the result would determine the next step and if further investigation is needed with scans.

If an MRI does show up something it doesn't automatically mean that treatment is necessary, for many men it can mean that they are put onto Active Surveillance and monitored every 6 months as prostate cancer is usually slow growing. If something is found and needs treatment then in all likelihood it would be with curative intent and one good statistic to take away is that 98% of men die with prostate cancer not of it. 

Please ask any questions and we will try and help.

Hello and thank you - I love your user name. It’s a phrase I used many years ago about someone else so it was good to see it again!

Out of the list of possible reasons for high psa I’m thinking the enlarged prostate is most likely (if it’s not cancer) as he has two generations of this before him. 

we just have to wait and see I guess. I kind of feel like I shouldn’t have nagged him to get tested and then this can of worms is now well and truly open but equally I know it’s good to know now and just deal with it.

my husband is very matter of fact about it all and wanting (quite rightly!) to take things one step at a time. The main thing upsetting him is my upset and concern so it’s good to have found somewhere to talk rather than asking him all the ‘what if’s’. 
thank you for your reply x

Hello HappyRose

im sorry to read of this anxiety for you - especially as we are coming up to Christmas. I hope I might be able to give you a bit of reassurance by telling you about our journey?

there is a high incidence of both breast and prostate cancer in my husband’s family and he was having 6 monthly tests for quite a time before being diagnosed. This is because, back then, they did not do MRI scans before biopsy and the old fashioned ( now) TRUSS biopsy ( through the back passage and with a high risk of infection) could only reach one part of the prostate. These days, a scan guided template biopsy is more often used with less infection risk and greater accuracy. On digital examination , there was no problem with the prostate and he had no symptoms. It was agreed to monitor his PSA until it reached 10. ( He was older than your husband and the older you are the higher the PSA can be before a problem is suspected). Anyway, after several years, his PSA reached 10 in July 2022.

He went along the diagnostics pathway and was diagnosed as T3 a N0 M0. This means that his cancer had (in his case, probably) broken through the prostate and into nearby tissue T3a) with no lymph node involvement (N0) and no secondaries ( M0). His Gleason score was 4+3=7 which means there were a higher number of more aggressive cells. He was then offered treatment ‘with ‘the intention to cure’ - even after several years of troublesome PSA figures his cancer had not spread. However, I think he now wishes it had been treated earlier and before it had spread , potentially, outside the prostate. We were unfortunate in that the concerns were brewing before they had the more advanced diagnostics that they now have! 

The big positive about prostate cancer is that, in many many cases it is very slow growing and, even if not curable, it is very treatable. 

my advice to you, now, is to find out as much as you can so you feel in control of whatever might be thrown at you. Take a look at www.prostatecanceruk.org. They have some brilliant information leaflets which are easy to read. They will explain diagnostics, treatment options etc. they became my ‘bible’ as we were going through the diagnostics!

my own emotional response was that of being scared silly and constantly in floods of tears! But, once we had a treatment plan, my emotions settled somewhat. I had fantastic support from people on here and also got loads of information!

please remember, too, that a raised PSA can also be due to other causes - infection, sex before the test or even bike riding before the test!! ( or so I have been told!). Your husbands PSA is raised for his age and it is far better to deal with it now, find out what’s what, and choose the treatment option best for yourselves if your worst fears are founded.

best of luck !

Hello thank you for your reply. No sex or bike riding took place (unfortunately!) prior to the test. It’s ‘good’ to hear it’s normal to be in floods of tears - prior to this I knew nothing about prostates - naive in someways though had never had any need to I guess. 

I am the sort of person that likes to know as much as I can about something to be able to deal with it. Like you, once over shock I go into calm organised mode which is when I know my husband will be the opposite. It’s the other way round at the moment.

Thanks for the links. It’s good for me to become informed. We can’t talk about it much at home as want to keep it from our teenagers until we know more. I do have to keep reminding myself that at the moment we don’t know anything other than the psa score.

How is your husband now? 

HappyRose  - hello from me too.

I am not going to try and add direct information to this because my friend Alwayshope  know a lot more about everything than me.

What I can say to you is that this bit, before any full diagnosis and information, was the worst part of my own journey. You cannot help but to worry, and worry a lot.

Please ask all the questions you can think of to this group. Someone will have an answer. There are quite likely many answers, all of them true, and acceptable.

This is because prostate cancer is one of the most treatable of all cancers.

Gradually, the worry will ease. It will be replaced by the beginnings of confidence.

So, to suggest answers to your questions:

1. There are a lot of people active in this forum with both higher and lower PSA results. PSA is an indication and not a diagnosis.
2. Given what you said about the family history, you did exactly the right thing.
3. The Urology phone call is most likely to be a review of the current knowledge and suggestions of next actions. You will still be in the diagnostic phase, so there are likely to be options. Beyond that, I don't think that anyone can give a prediction.

There is some comfort. Even the aggressive forms are slower than most cancers. You have time to consider and find the right treatment, because there will be one.

Steve

Thank you Steve.

One step at a time I think is the way to go here. I am pleased I found this forum. It’s so comforting to know there are people who understand. X

There is a good book you can download for free if you want a reference all in one place.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Being anxious comes with the territory along with the floods of tears to start with for many of us but things do get better once you know what you are dealing with.

Yes. You did the right thing. 100%. I had a PSA test in 2021 (ish). I asked for it following the campaign of Bill Turnbull. My result was 3.1. Had a finger examination. No concerns noted. Had a meeting with Registrar. In fairness to her, she talked about progressing to an MRI but it was not emphasised with any seriousness hence decided not to proceed (easy option, typical bloke) and watch and wait. In hindsight, it was a big mistake as I almost certainly had Prostate cancer in its early stage because, in 2023, I had a PSA test again and this time 5.3. I’m 57. MRI revealed T3a diagnosis, locally advanced. So yes, regardless of the outcome, you did the right thing. In my case, I have almost certainly saved my own life in pursuing a PSA test that many might have suggested was unnecessary as I had no symptoms. Best wishes on your husband’s outcome. My thoughts and prayers for a positive one. Any questions, ask away 

Hello HappyRose, at the time I was desperate for some sense of control in a world that was spinning out of control! I thought (and found) that knowledge would give me some sort of power in a pretty disempowered situation! It did give us power in one sense because it guided our questions during the ‘medical encounters’.

my husband is fine, thank you. He chose the radiotherapy and hormone therapy pathway. He started hormone therapy in November 2022 and finished in May this year. He had 20 sessions of radiotherapy in Feb/ March 2023.

He did not enjoy the side effects of the hormone therapy but has gone from strength to strength since finishing it. The radiotherapy was ok. We both got tired with the travelling but he did not have any nasty side effects.

our biggest concern at the moment is the fear of recurrence. Our joys of the moment are that we are still here together with a real respect for life and awareness that we have to make the most of each and every day. In some profound way which I find difficult to explain or even understand, having fought this battle together we are even more closer in our relationship than ever before! 

a cancer diagnosis of any sort is a ‘life jolt’ and very scary but we faced it head on and got through it - just as you will ! 

 Let those tears flow and look on them as  both a release of pent up emotion and a perfectly normal reaction! My difficulty was that we were having to wear masks at all the appointments. I never did learn how to blow my nose without removing my mask!!!!

beware with your teenage children! We were asked not to tell our teenage grandchildren until the way forward was clear. They quickly gathered something was going on and asked me outright! I answered their questions in a language they could understand and truthfully but as reassuringly as possible. They seemed happier knowing what was what rather than worrying about things that could be even worse! They accepted the facts, moved on but supported us by cheering us up on the tougher days!

Thank you. It’s interesting to hear from someone of a similar age to my husband. Thank you for sharing your story and whilst i say I wish we hadn’t found out anything and just carried on oblivious, in reality I know we did the right thing. This has helped as we discussed what to do if given the option of an mri and my initial thought was if we were given a choice then say no as it’s obviously not that serious! So your experience has totally changed my mine and if he’s offered the choice of an mri it’s best to just go for it at this stage. Thank you