New here , diagnosed in December , just introducing myself

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Hello everyone , I’m not sure how this is done but here’s a quick my story: 

Noticed a change in urine stream last summer. Blood tests showed PSA 5.3 , biopsy 3.4 Gleason score . Went to London hoping for HIFU but was told as I’m multifocal I was not suitable. Telephone consultation has lead to Brachytherapy arranged for June and although the telephone consultation was extremely helpful, I’d really appreciate contact with anybody who’s had permanent seed Brachytherapy. 

Diagnosis came as a horrible shock, I’m a very active 58 year  and am extremely frightened at the prospect of the side effects changing my lifestyle and making me into an unhappy, hard to live with character. Like all of us , I have loved ones who I want to stay around for as long as possible and be a loving, caring , father , grandfather, brother and lover but if I’m 100% honest I’m feeling pretty scared of what my life will be like following the treatment. 

I wish you all well and look forward to chatting 

  • Hi

    The good news is that it is 3+4. Is it localised and contained within the capsule?

     My profile is/was, age 64, reasonably fit with localised T2 PC on the right side. My Gleason score was  7 but unfortunately a 4+3. My grade group is 3. PSA 5.8

    I was under the care of Prof. Langley prostatebrachytheraphycentre.com who has provided first class care and everything he told me so far has been spot on.

    As my urine stream could have been stronger, he gave me the option of a mini TURP, although not absolutely necessary, it would help with swelling post seed implant. I took his advice and last November he operated.  I was peeing like a 16 year old again!

    As a 4+3 he advised HT, but did say that if I was a 3+4, he would not prescribe. So hopefully you do not have to have it. He also prescribed Viagra to help with any erectile dysfunction caused by all the treatment.

    Seed implant was in Feb this year, absolutely no problems.  Sure my peeing has not been so good, as the prostate swells, but they give you Tamsalosin which helps.

    Recent blood test, PSA 0.4 So all good with my next review 17th May.

    Side effects? Well, if you are not on HT, then yours will likely be completely different, but I can tell you that the main problem is tiredness and ED is not a problem. So if you are not on HT and the PC is contained, then it should be straightforward for you.

    Feel free to ask any questions

    Kind regards

    Robin


  • Dear Robin

    Thankyou so much for your reply and the first thing I want to say is how pleased I am for you to see your blood test results/PSA level. That must be great news for you and your family. 
    I am grateful for your openness and I appreciate that all our cases may differ in a number of ways. I suppose the overriding factor should be the effectiveness of the treatment which judging by your blood tests has been, and is being extremely positive. 
    Urine leakage , reduced stream I’m realising will vary from case to case as I suppose will all side effects but any problems with diarrhoea? Bleeding ? Painful ejaculation ? 
    I’m afraid my list of questions may go on a bit so I must apologise for that 

    Regards 

    Dave 

  • Hi Dave

    No leakage, there can be a little more urgency to pee and I do get up in the night sometimes but I am told this will subside.

    No diarrhoea and bowels have if anything become more regular. They do say you can encounter some bowel issues 12 months after the seed implant, so we shall wait and see.

    As for bleeding just a little post op, but only short term and again no problem. 

    Painful ejaculation, no. However as I had a mini TURP this can lead to dry ejaculation and it did lead to less seminal fluid. Tamsalosin, also causes dry ejaculation, so now there is less seminal fluid, but I am told that I can expect improvement once I come off these meds. However, if you are not having a TURP this will not apply to you and I recall Prof. Langley advising me that quite a few patients have gone on to father children after Brachy.

    In my mind, the most important thing is to get the best care possible. I had to go out of my Health Authority area and am so glad I did.

    Kind regards

    Robin

  • Hi Robin and thanks so much once again for kindly sharing your experience with me. I can’t overstate how much it helps just hearing from someone like you who has had the procedure.  It certainly seems as though you’ve had some excellent advice and treatment and I hope for the same as I too am being referred out of my local area for treatment at Leeds. I had a very helpful phone consultation and am going to ring again with a few more questions before I go for the procedure. 
    In terms of the tiredness Robin , how much has that effected you and has it changed what you do or are able to do ? Work ? Activities? Does it make you hard to live with ? I may have to warn those around me ! 
    I’m a keen cyclist and train at the gym as many times a week as I can and while I know this will change as I recover from the treatment I’m wondering how I’ll deal with work and physical activity after Brachytherapy. 
    Once again I thank you sincerely for your openness and your time 

    Regards 

    Dave 

  • Morning Dave

    Are you going to be on HT and if so, what type?

    If you are not, then the radiation can cause some tiredness, after all your body is being attacked from the inside, but I don't think you will have too much problem continuing with your daily routines.

    I think, as you can never be sure, that the HT is what has caused more issues for me, although my wife tells me that with the depleted testosterone, I am a nicer person lol.

    Kind regards

    Robin

  • Hi Roofbeaver,

    Ive been in exactly the same place that you are now, in fact  your words were my words back in January. My psa was 5.2, my Gleason score 3+4. My biopsy showed that pc was bilateral. I was given two options, prostate removal or brachytherapy. I was told hifu was not an option as that was  really for pc on one side of the gland only. Like you, my big worry was how would whatever treatment I had effect my life style. I am a keen runner, always run 3 to 4 times per week, also go the the gym almost every other day. I’m almost 66, so I’m thinking you would outrun me young Roofbeaver, but not without a fight, I can tell you! 
    Anyway, my older brother had the hifu last year, and his was very successful, but he only had pc on one side of the gland so he was the right candidate for hifu. Knowing that hifu is the least invasive and least side effects, I went for a private consultation. That led to me being told that i could have what they call ‘whole gland hifu’, but that would mean the side effects would increase, and long term (from my understanding) the success rate was not as proven as brachytherapy. Robin P’s post regarding his consultation with Professor Langley helped me with my conclusion. So I finally decided on brachytherapy, and like you, worried about my lifestyle. I worried more when my consultant said that I would have hormone tablets for 3 months before the procedure. It was explained that I might get manboobs short term (but another tablet would counteract that) and also tiredness. I put a plan into operation to find out if that was happening. Before I started taking the tablets, I ran 5 miles giving it my best shot. My time was 47.30. Then i started the hormone tablets, and have run exactly the same course every Tuesday, again giving it my best shot. Every week I was within 30 seconds of that time. I even beat it one week, 46.59! So there is your proof that the hormone tablets won’t effect your lifestyle!

    I had my brachy seed implants yesterday. The procedure went well with no complications. Today my jacksy is bit sore, but that is to be expected. I have more tablets to take to help with peeing, also to stop constipation and of course antibiotics. I’ve been told to relax for a week, which I will struggle with. Then take it a little at a time, so I won’t be doing my Tuesday test for a while. So it’s fingers crossed for me, that I can get back to where I want to be... out there running in events like the Parkrun and 10k’s. 
    Diagnosis was a horrible stock for me too, Roofbeaver. I had no symptoms so I kept thinking they must have the wrong person. My consultant had impressed on me that the brachytherapy is a curative treatment, that it will eradicate the pc and that must be the main concern for all of us here.

    So don’t fret, young Roofbeaver, you will be fine... loads of guys on this site will talk you through any of your concerns. We are all in this together...

    All the best one and all!

  • Glad it all went well yesterday. Do take their advice and relax for a week, your body needs to recover and you dont want to dislodge any seeds :-)

  • Hi Robin and Benny Ed

    ive just posted for young Roofbeaver.

    just to let you know I had my seed implants yesterday. It went well, 71 seeds in all.

    I was told that Professor Langley was present, Robin, although I never saw him. I did take your advice with the picolax, Robin, waking up at 4.00am to take the fist dose! Strangely, it had no effect. Even the second dose was not bad, I was even getting worried that it was not working! I must have the constitution of an ox, from what I have read about this stuff!

    So now I’m resting... and hoping that the next 3 months go well... any advice from you guys will be appreciated!

    all the best one and all!

  • Only advice is take it easy as the Tamsalosin causes your BP to drop.

  • Dear Baffledman 

    I apologise for my slow response but in the run upto to my treatment which is 3rd of  June, I’ve been chasing around like a blue a@@@d fly trying to fit as much work and training in as I possibly can. I am emboldened and so pleased to hear your positive reports and now head towards the treatment feeling far more confident of getting back on the back in actual and metaphorical terms ! 
    You have all helped me feel stronger and more confident and I thank you all . 
    3 of us in our late 50’s work together and after my diagnosis, I shared my woes with my comrades and am glad I did . One of them had his prostate out yesterday after relating my urinary changes to  his. His PC was described as extremely aggressive and about to break out from his prostate. The third man has an enlarged prostate but so far and fortunately not diagnosed with PC.

    The power and importance of us men talking openly about this saves lives, it really is vital to get that message out there.  I will report back after Wednesday 

    Thanks again 

    Dave