New here and anxious

Good Evening Loobjo 

A warm welcome to the Macmillan Online Prostate Community - I am Brian one of the Community Champions here and am just starting my 4th year on my personal Prostate Cancer journey.

Prostate Cancer is usually diagnosed from the Prostate biopsy. The DRE (digital rectal examination) says it's enlarged,  his PSA is high for his age and PI-RADS 5 from an MRI says "it's very likely that you have Prostate Cancer that needs to be treated".

Here's a link to our information on the The Prostate Biopsy

At this point (none of us are medically trained) but we have been around for a while!! I would say to you - yes it's looking like he has Prostate Cancer but it should be very treatable with a "curative intent". A fact to remember is 98% of men with a Prostate cancer diagnosis die WITH it not OF it. It's been found early - well done for having the PSA test.

The biopsy with give you some figures - A Gleason Score (how aggressive the cancer is) and a TNM staging - where the cancer is. Once your husband has these - his treatment options will be discussed at an MDT meeting at your local hospital.

We are a friendly bunch and try to give an honest opinion - please do ask any questions, however trivial they are but try not to worry - he's starting his journey and we are with you.

If you are doing any research please use trusted sources, Macmillan, Cancer Research UK and Prostate Cancer UK (not Dr Google as some  information is out of date, just wrong or American and not applicable in the UK).

If I can do anything else for you please let me know - our Support line on 0808 808 00 00 (8am to 8pm 7 days a week) is there for you and the family.

Best wishes - Brian.

Hi Loobjo sorry you are here but this is an amazing site for really good information about prostate cancer.  As Millibob has already indicated, the probability is that your OH has early signs of prostate cancer, but nothing so far indicates it is a big problem, so try not to worry.  Broadly at diagnosis there are 2 options - these are treatable (of which I am one)  and curable (which sounds likely for your OH).  Even with treatable I have been 7 years and still going, enjoying a good life.  The hard part about all of this is waiting for results, but once you know, life does return to some normality.  Please come back with any questions and you will get honest answers from people who have been through this and have the T-shirt!  David

Thank you . I’ve been reading for the last week lots of posts on here , the people are lovely and the replies so helpful and caring , no question is a silly question is mine and my husbands little saying and I can see that here , so I won’t hesitate to ask anything . It’s a completely new world to me that I have delved into the last couple of weeks . I think myself he has prostate cancer but just scared as what stage it is , scared of what’s to come but also just want to get started with the treatment .

The wait is driving us mad , we just want to know what we are dealing with and start treatment to get rid of the little bugger. We’ve got 4 children , only one still at home who’s doing his A levels and hopefully going to uni in September so we are adamant nothing is going to disturb that for him , life will go on as normal as it can .do you know anything about the relevance of Psa density I’ve looked it up and it doesn’t sound good , I know I shouldn’t look things up but you can’t help yourself, I’ve stopped now and are just using the recommendations from Millibob. 

The waiting for a plan is the worst time of dealing with diagnosis. 

I am now approaching the second year of my journey with this rotten disease, and about two-thirds of the way through my programmed radiotherapy treatment. 

My health hasn't suffered as a result of the radiotherapy but I will tell you that it has been a bit of a drudge, a bit like commuting with medical treatment. 

I have two more years after this of hormone therapy, at the end of which time we take stock. 

It took a bit of time to get to this point because there were biopsies, MRI scans, CT scans, and much discussion but I am confident the right treatment has been chosen. 

I am on a curative pathway and I am told that the odds are pretty good that it will be beaten, and even if that is not to the case in the long-term, it will be kicked into the long grass for some time. 

Nothing that I have been through so far has been hard to live with, and I feel that I am quite capable of enjoying the life I have. There might have been some changed but my life is not diminished. 

One thing that might help you right now is something told to me by the canton specialist who did my biopsy. He said that with prostate cancer it moves slowly, even the aggressive types, and that they therefore have a chance to get it right. 

The best advice I could offer you at this stage is to grit your teeth, do your reading, ask questions until you get answers you understand, and then go out and get on. 

I have been on holidays, and apart from this period of radiotherapy when I have put myself into a self-imposed isolation so that it doesn't get slowed down by me catching a cold, I have generally lived life as I did before. 

The odds are overwhelmingly in favour that you have a lot to live for, and you might find it licensed the mood to start planning for what that living looks like. 

Best wishes 

Steve

Hello Loobjo and welcome. You have asked about PSA density so here is a little information.

The PSA density (PSAD) is calculated at diagnosis of prostate cancer and is the serum prostate-specific antigen (PSA) level (ng/mL) divided by the prostate gland's volume (mL), resulting in a value in the units ng/mL2 1. Prostate volume is calculated from measurements obtained using transrectal ultrasound (TRUS), MRI, or less commonly, resected pathological specimens. 

PSA density has been used as a prognostication tool to help decide between active surveillance and an invasive approach when managing prostate carcinoma. The cut-off most commonly used is 0.15 or 0.20 ng/mL2. 

One thing we are all worried about is whether the cancer can come back after initial treatment and a recent meta analysis suggests that a higher than normal level is predictive for high risk patients who opt for surgery but the same does not apply for those who opt for radiotherapy. There are many caveats in the work but basically the PSAD is only one of the risk variables which will be taken into account when the experts decide on the treatment plan.

https://bmccancer.biomedcentral.com/articles/10.1186/s12885-024-12029-8#:~:text=Prostate%2Dspecific%20antigen%20density%20predicts,cancer%20who%20underwent%20radical%20prostatectomy.

I  usually point new people in the direction of is a free book which you can download for reference.

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

It can be very frightening and confusing to start with and initially all you can think about is prostate cancer but try and take time out to do the things that you enjoy. Ask as many questions as you like and we will try to answer.

Hi again Loobjo , try not to think about all the options at this stage or you will drive yourself nuts.  Once the biopsy results are known, come back here and we will guide you through the maze.  Just take things day by day, your OH will be fine.  Ask any questions as you need. Hopefully you have seen from other posts that the guys and girls on here have a wealth of practical knowledge.  We have all been where you are now.  Best wishes, David

Hello Loobjo

im sorry to hear of your distress. You are at a point which I found one of the worst times in my life! My husband was diagnosed in Autumn 2022 and my emotions were all over the place - fear for him, fear for me of losing him and what he would have to go through, anxiety because the NHS seemed to be working so inefficiently, grief for our loss of all known certainties and a change in our circumstances, panic for our children because of the doctors saying this could be genetically influenced and they would be at risk and so on and so on. I couldn’t ( and still can’t) sleep and I cried enough tears to fill a reservoir!

what we did find, though, was that when we knew what was what in terms of how bad things were and the treatment plan a new normal set in. My emotions settled a lot and some pretty amazing things happened! We realised that we have to make the most of our time together. We had come up face to face with the fact that none of us go on for ever! So we have got so much more appreciation out of each others company and living for the here and now! We’ve had fun! Our relationship became so much closer! 

a few practical tips I found useful at that stage:

I kept a diary of every contact with anyone and everyone we spoke to at the 3 hospitals within the same trust at that time- recoding contact details,  names and what was said. Things rapidly became a blur  but being able to pick up the phone and speak directly to the urology services manager or the bone scan appointment administrator was a real help

i learned very quickly that if we asked for a last minute cancelled appointment we had less waiting! This obviously meant dropping everything at short notice  but it worked!

I also learned that sitting back politely is not an option! You have to be politely assertive and chase up appointments etc etc etc

Finally , the most magical words we heard were when the prostate cancer nurse handed the hormone therapy prescription to us and said, ‘when he takes the first tablet the cancer is stopped in its tracks!’ I’m not sure if this is medically accurate but I couldn’t get that first tablet into him quick enough!

You have just received a ‘life jolt’. It’s hell at the time! But just hang on in there- things will settle for you and you will soon know exactly what you are up against, have a plan and realise that there have been lots of advances in treating prostate cancer these days and, even if not curable, it is eminently manageable.

i wish you , your husband and all your family all the very best as you step out on this journey :)

Thank you that’s great to hear that your life hadn’t been altered too much . We’ve spent last 20 years putting everything into bringing our children up and doing everything for them , we have the plan for  September when last one goes to uni to enjoy ourselves as a couple I just feel like it could be taken away from us . I’m reading all the positive stories on here which is easing my anxiety a bit , I’m coming to conclusion that life will go on it might be a little changed, it might not be the plan but it will go on which was my initial fear . 

Thank you I am very frightened and very confused, husband is not reading anything just going with the flow , I feel like I need to be the one that reads all the information to be prepared . I will come back with any questions as it’s great to hear all these stories and advice