Just diagnosed

Hello, this has turned our lives upside down. The first 24 hours storms of despair blew in and blew out again. The nights are the worst. People wrote to me from this site which was hugely comforting and got us through. Today more waves come through but less regularly and less intense. I actively look for distractions, I keep trying to live in the moment and try really hard to face one bridge at a time. I have started taking the hormone tablets and the consultant was very clear that there are things that can be done. He gave us hope, a fighting chance. It can be managed. I certainly hope so. I still have thoughts of why me? Why now? It's not fair. Etc My wife is going through this with me. That's both a huge support and source of concern. She has had a couple of panic attacks at night. As I wrote before, we try to get away from the dark thoughts we imagine a lovely walk and do it again and point out all we see. It has helped. 

We all have to deal with this in our own way as best we can. But distractions and living in the moment is going to be my way for the time being.

My very best wishes , G

I can only say try and keep positive.  I am waiting for my bone scan results next week and s******g it.  What was your psa and biopsy and Gleason scores   I find the mornings are most difficult as I don’t want to get up but am ok when I do.   How old are you btw.    

1. Hi, I'm 69. My PSA was v high at 77. Only had biopsy 24h ago but bone scan showed sclerotic areas on my hips. I was more or less symptom free apart from achy hips but my dad always was very stiff so thought I had the same. Have a CT scan next week then I will be referred to oncology for where next. The numbers scare me and frankly avoid asking about the future. We are all individuals and respond differently so am wary of predictions (or do I just not want to know,?) . My consultant did say that it can be managed and can expect many years. I'll take that. 

Hiya mate.  I’d defo take many years    I had no symptoms and took a test offered at work       The word cancer is a shock and when I went to see about my biopsy i knew it was coming.  My consultant almost breathed a sigh of relief that I said I was expecting it and I’m fine.   My Gleason score is 3+4 which I’ll take.  I think we might look back this time next year and wonder what we were worried about.   Keep in there pal.   How many people get told you’ve got many years      Cheers.  Simon 

Hi Cader28 - as usual Alwayshope has provided a comprehensive answer and I hope that you have been reassured by this, and other members’ experiences on here.  You will always feel safe on this site, so feel free to ask questions.  
Right, now on to your specific case. You haven’t had your biopsy report yet, so we don’t know your Gleason score.  The histology from that biopsy is king.  This is really what you want to know.  You have a possible bone met identified (bear in mind that the bone scan has identified an issue with your hip but there is still a possibility that it’s not related - after all, you said that your Dad had achy hips - did he have prostate cancer?).   With a PSA of 77 you may expect a highish Gleason score.  However, we have members with higher PSA scores who are curable (for instance, our champion Millibob ).

So, let’s suppose that histology comes back and you are diagnosed with T4 prostate cancer.  It’s not the end of the world.  We have several T4 members on here and their positivity is inspirational. But this is not without foundation : treatments today are very effective and can be targeted accurately at the cancer sites. Your team know where your possible bone metastasis is and my feeling is that the hip (if it is a met) may be accessible by radiotherapy to kill the cancer at that site.  Please don’t take this as a fact: I am not medically trained but I do have extensive research behind my comments.  
If you are found to be a definite T4, Systemic therapies are tremendously effective nowadays. Stay fit to minimise side effects. Chemotherapy may be required in your case, and you will certainly be headed for hormone therapy.  Don’t despair- these therapies can be taken in your stride.  I have a good friend (he’s not on this site) and his presenting PSA was 2,016! (Not the year!) . He already had shoulder pain and eventually prostate cancer was diagnosed.  As expected, he has multiple bone metastasis. However, that was nearly two years ago and, after six rounds of chemotherapy (he got through these ok, with the final two rounds making him very tired for a few days, but now a distant memory) and he’s on hormone therapy for life (when mets are extensive, they can’t, of course, be zapped with radiotherapy).  However, his side effects are completely under control, his PSA is 0.01 and he’s returned to work as a nurse. 
So, please show this (long!) message to your lovely wife and hopefully those panic attacks will subside.  This is 2025: medical science is very advanced for prostate cancer: it’s the one we can see clearly (especially with PSMA PET scans) and we can treat effectively.  Let’s hope your CT scan is clear (I think it will be, based upon your presenting statistics) and let’s hope that you only have the one metastasis in your hip.  There is hope. As you say, live in the moment, let the medical professionals do their work.  I would, however, keep the pressure on them to get you on hormone therapy as soon as possible. That will stop the cancer train in its tracks.  Keep us informed.  Good luck.    AW

Hi Simon64 - I haven’t forgotten you!  After all, this is your thread. You’re only 60, with a Gleason 3+4. I fully expect your CT and bone scans to be clear. In your shoes, I would take a good look at brachytherapy with a side of hormone therapy,   If you have aggressive features on your biopsy report, you might want to step up to brachytherapy boost.  In any case, you look as if you’re heading to a curative pathway.  Keep pushing (politely) for prompt action.   AW

Thank you so much for taking the time to write the above. It means a lot and my wife is also very grateful. I am booked in for first HT injection in 10 days and CT scan in 3 days and I gather then a meeting of experts to determine where we go then. For a week or so we were in turmoil thinking I had little time left. My excellent consultant said that this can be managed and I could have many many years. My wife gave an audible cry at that point. Gosh it's tough but we do have what we hoped for...a fighting chance and hope. All the staff I've had dealings with have been wonderful. Faith in human nature restored! 

Trying to meet bridges one at a time but we are prioritising seeing more of the people we love and distractions to help us live in the moment. But phew. This month never had one remotely like it! Will be back when I know more. Thanks again! G

That is a very positive reply and I hope I’ve laid out the facts clearly.  I’ve amended my long message to ask about your Dads achy hips, as I wondered if the bone scan may have identified sclerosis of the hip rather than cancer.  If this was the case, that would be great news.  
You have a way with words and the way you describe those early days and weeks since the initial diagnosis is so raw:  many of us identify strongly with those feelings of despair and dread.  However, you (both) are now moving away from that awful phase and once you’re on HT you will feel much safer and happier in your outlook.    AW

Presumably you’re already on bicalutamide tablets, in the run up to your first jab?  In which case, the cancer is already being deprived of its food as the cell receptors are being inhibited.  The reason for the tablets is to stop the cancer grabbing as much testosterone as it can (producing a rapid PSA rise - or flare as it’s known ) when the jab stops testosterone production.   
AW

Your words made my wife cry...but in a good way! We are getting through but it is really hard for her too.

I had a bad do with Prostatitis years ago and the scelrotic patches on my hips I maybe hoped that the high PSA was the Prostatitis back and the hip damage due to something else e.g. arthritis but consultant pretty certain that the link is PC going to my hips. I accept that now but as you said starting HT has made me feel more positive. Thanks again G