Reassurance and positive experiences please.

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Hello there.

My husband (77) was successfully treated 10 years ago with HDR brachytherapy and two years hormone therapy. Tc3a Gleason 9 PSA at diagnosis 45.

Had regular PSA tests but latest had doubled in the last year to 6.8 so the process is starting up again. Had PET scan last week and call received from urology to tell him hot spots had been identified on his rib, spine and lymph nodes. The consultant was very upbeat and has put him immediately on Bicalutamide 50 and told him to contact GP to arrange 12 weekly Zoladex implants and is referring him back to oncology. 

My husband is optimistic and philosophical but I’m already catastrophising and overthinking everything. He’s currently very fit and well and no obvious sign that anything is wrong but I guess I just want to hear that others have had positive outcomes and it’s not an immediate countdown. 

Thank you for reading this.

  • Hi  , sorry your husband has PCa again.  Treatments have progressed significantly since his first round ten years ago.  So much so, that we now talk about either curable or treatable.  Your husband is fit so that is a very positive start.  He may have side effects from the HT and fatigue does feature for most of us, so starting from being fit and trying to stay fit and active is very helpful.  Take heart from the consultant being upbeat.  I have been on Zoladex for 7 years so far and hope for a few more! Best wishes, David

  • Hi JagChamp.

    Good afternoon and welcome to our prostate cancer family it's great to meet you today.

    I'm very sorry to see that your husbands cancer has returned following previous successful treatment.

    Yes I am currently on Hormone Therapy injections and tablets and my PSA has dropped from 1000+ to 1.79 over 12mnts.

    And like your husband I am still very active and you won't know that I have got the "Big C"

    So please please don't worry as the HT will put the cancer in to hibernation and hopefully his numbers will start to drop like mine.

    Prostate Worrier.

  • Thank you so much for both your reply and  They are both truly reassuring - exactly what I wanted to hear. I had a read of both your profiles too, which has lifted my mood considerably. My husband has never been a worrier about his health and is very philosophical. He’s always been of the view it’s better to know the facts and what we’re dealing with - I put on the brave face but underneath am a churning pit of anxiety and anticipation so to read your positivity and experiences has helped put the monster back into perspective.

    When our GP initially rang with the information about my husband’s rising PSA, the first thing he said was things have moved on considerably since his last treatment,  so you’re right, I need to hold that thought. He was very fortunate last time that the Zoladex side effects were pretty minimal, so hopefully he has the same experience this time.

    I appreciate so much you both taking the time to respond. 

  • Hi JagChamp.

    No probs it's my pleasure!!!!

    Please please let me know if there is anything else that I can help/support you both with???

    Prostate Worrier.

  • Good Evening  

    I couldn't agree more -  is spot on there, treatments have come on so fast in the last 10 years there is a lot to be positive about. Yes, your husband's PSA is increasing but it's been caught and he's back in the system.

    The HT will start working in the next few days to stop any further growth and as he's fit and active he should be fine. The fact I love to quote is 98% of men with prostate cancer die WITH it not OF it.

    Stick with us and let us know how you get on with oncology.

    Best wishes - Brian.

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  • What a wonderful community here, I’m already feeling a little bit better about the future and your replies are more appreciated than you will ever know. Thank you all again so much. 

    I keep trying to hold the thought about ‘lots of tools in the box’ as I really like that one. 
    I guess I’m still trying to process the fact that despite 10 years elapsing, the little b*****s have been testing the fence and have managed to break through when we thought they had been obliterated. Fingers crossed the hormones send them back to their lair for long enough too.

    I’m hopefully thinking far, far ahead here, but if the hormones do become less effective, what has been the next step? Is it now standard procedure to offer something like Abiraterone or is it a lottery depending on where you live in England? 

  • Good Evening  

    We have an amazing community here and there's a wealth of knowledge and everyone is happy to share their journey and experience.

    HT is great and it should be fine, however Abiraterone is now on the English list of approved medication so it's there if needed and I am sure your oncologist will have a plan. Stick with us and keep us posted as to how he gets on, in the meanwhile feel free to join any thread - the more help and information the better we all become.

    Best wishes - Brian.

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  • Hello  

    It must be hard to be told that your husband is having to deal with a recurrence after so long. My husband is further along the line with advanced prostate cancer in that he was diagnosed T4 almost 4 years ago with a very aggressive variant. He is still going strong and we still have a good life. As the others have said, things have moved along a lot in recent years and treatments have become a lot more accurate and targeted. It is our oncologists favourite saying that they have plenty more tools in the toolbox and even though hubby is 80 they are able to offer a variety of treatments when the first line of attack failed. The oncologist will be looking at all your husband's scans and results to determine the extent of the recurrence and can recommend a variety of treatments from a choice of 4 different 2nd generation antiandrogens, more radiotherapy (but very targeted) to the areas which are showing metastases, or even chemotherapy. After this there is then a battery of treatments if necessary which include nuclear therapy, immunotherapy, gene therapy plus more chemotherapy and maybe trials. There is now a more accurate scan available in most areas called a PSMA PET CT scan which is capable of picking up very small metastases so it might be an idea to ask about this. What we do know is that your husband will be given treatment to keep him as well as possible so that you can carry on enjoying life together. 

    Let us know what happens and please ask any questions.

  • Thank you Alwayshope, that’s a fantastically reassuring post and excellent to hear that treatment isn’t related to age. I’m genuinely happy to read that your husband is still being offered lots of options too. I lost my father 40 years ago to bowel cancer and my memories are still vivid of the way he was almost dismissed and sent home to die horribly when the only option of a colostomy didn’t work. I think that’s possibly why I’m so twitchy! 

    Interestingly, following my husband’s rise in PSA, he was sent to our local hospital for a CAT scan plus an MRI. He was told he had absolutely no metastasis, although there was a shadow on his rib cage that they wanted to check, so he was sent to Southampton where they have a PMSA PET CT  machine. This is what has picked up these small areas of concern on his rib, spine and lymph nodes.

    I guess we really should be thankful that the local urology department were so diligent, otherwise he would have been sent on his way and things might have got far worse and be more of an issue by the time he experienced problems. Currently, he is so fit and well with so much energy you would have absolutely no idea he has Pca. 

    Thank you again for taking the time to reply. It’s amazing how much this type of message gives me hope and strength in order that I can fully support him through the next possible stage of his treatment. 

    xx

  • By the sounds of it the metastases have been picked up whilst still small and the Bicalutamide (first generation antiandrogen) will be blocking the cancer cells from binding to the testosterone and depriving them of their food, plus it will limit the flare when the Zoladex is initially administered. The Zoladex works in a different way by blocking testosterone production and hopefully your husband's experience with it will be repeated. The fact that your husband's cancer was so receptive to the Brachytherapy and radiotherapy initially is a good sign that it can be dealt with by targeted radiotherapy in the future. There is one school of thought now which advocates dealing with the mets straight away with curative intent and possibly allowing your husband to come off the HT again. There is a limit to the amount of radiotherapy you can have in one area but this doesn't necessarily preclude having spot radiotherapy to the same area if necessary - it depends which, and how many, lymph nodes are affected. If the lymph nodes are not in the pelvis but in another area then trying to deal with them early might stop further spread through this highway in the body. Bone mets are a good candidate for radiotherapy. My husband had this SBRT in April of this year to multiple mets, including lymph nodes, and is now feeling better than he has felt in a while, plus the treatment seems to be working at the moment even with his aggressive cancer. As your husband is fit and well then this is an option you could explore with the oncologist. 

    All hormone therapies control the cancer but don't kill the cancer cells. Long term use of them can be effective for many years but eventually the cancer cells will mutate and find ways to get round being blocked. The drugs available at the moment can work in different ways so if one fails then another one is waiting in the wings plus there are plenty more on trial at the moment which could change the state of play in a few years.

    I think that all the other treatments I mentioned previously will be kept in the toolbox for a lot further down the line. Some of the treatments are dependent on having certain gene mutations so maybe another question for the oncologist is whether they think having a genetic test on the original biopsy samples might be of benefit.

    Don't forget to look after yourself as well as you are an important part of the team.