Hello

After a routine blood test at the end of March 2021 I was referred to my local hospital with a PSA of 79.39. Since then I’ve had 2 MRI scans, a bone scan & a PET scan. I’ve also had a biopsy under general anesthetic. My Gleason scale is 4+3=7 T3B. I’m now just waiting for them to discuss my latest MRI scan which was done last week My CNS has been keeping informed throughout either by phone or email. Just waiting to find out the next step

  • Hi 

    I can understand how your feeling at the moment, the good thing is your team is on the case and discussing how best to go forward. Just keep positive, all will be taken care of, whatever they decide, it has your welfare up front.

    Stay safe

    Joe 

  • Hi Joe, thanks for this. I have a telephone consultation tonight to discuss Robotic surgery. This is something that I never even thought about. Most people that I know have had radiotherapy. I’ve spoken to my CNS twice today & she said that it’s something that I don’t have to decide tonight. 

  • Hi Tyler

    Just seen u have two posts running.

    With a T3b u could be better off with Radiotherapy, as the cancer has spread to the seminal vesicles.

    Not  saying   surgery can't be done but a bit of a risk if not contained, just  my view though,  others may not agree 

    Steve

  • I’m confused now, spoke to my consultant tonight and he has recommended that I have hormone therapy & radiotherapy. I may have miss-heard him but I’m sure that he said this could take 3 years to complete. He did say that I could have robotic surgery but this would be done as a trial. I have another appointment next Friday for me to decide on which option to go for. 
    Surely they should just give you just one option & that is the one best for you in their opinion. After all they are the experts. 

  • PC is different to other cancers and you can get different options for treatment and then it's up to u to decide.

    Your 3 years treatment would comprise mainly of hormone therapy with approx 20 sessions of Radiotherapy at some point probably after a few months.

    In your situation this is probably the best option but see what others say 

    Regards

    Steve

  • Hi Steve, thanks for this information, very helpful.

  • Hi Tyler.

    Yes, it could be up to three years on HT although most consultants opt for two years, occasionally there will be a three year plan. It largely depends on the position and aggressiveness of the tumour. My diagnosis was T3A N0 M0 with a Gleason score of 4+5=9 and my consultant said I would be on Prostap for three years. I had my last injection in June this year. The side effects of HT are different for everyone but I found they were manageable. Take lots of exercise to combat the fatigue even when you don't feel up to it go for a short walk. I was totally floored in the first six months of HT (having 20 sessions of RT after the first four), but started a strict exercise regime after my RT finished. It took several months to even regain a modicum of fitness but I am now swimming a mile twice a week, walking 20km or so every week and rowing for an hour once or twice a week, which is pretty good for someone who is 74. You will get through it.

    My hot flushes were well controlled with a combination of Sage Leaf capsules and Evening Primrose Oil capsules twice a day, with the addition of a homeopathic remedy of Cuttlefish ink about once per month.

    My PSA has been undetectable since a couple of months after finishing RT and I am looking forward to being able to cut down on the remedies over the next few months as the residual HT wears off. As I am now on six-monthly PSA tests the next one isn't until December, that will probably be a bit fraught.

    Yesterday is history, tomorrow is a mystery and today is a gift.
    Seamus
    (See my profile for more)
  • Having only been on here for less than a week I’m finding it really informative. I have a question regarding HT. Reading the threads it states you can put on an extra 4 inches around the waistline. Is this immediately or over time. Also does this mean that you also put on weight? At the moment I’m 90kg with a waistline of 38 inches. Ideally I would like to be lower than that. I retired last November, before I retired I used to walk around 2-3 miles a day because of my work. My brother and I often go to Cambridge or London ( I live in West Essex) where we can often walk up-to 10 miles without even knowing it. I suppose my main concern is that does the side effects kick in straight away or over time. 

  • Hi Tyler.

    You will find the side effects build up over a few months. Exercise is particularly important when on HT. As much as you can and then a bit more!

    One of the untold problems with HT is that it tends to increase your HbA1C levels. A couple of months ago I was diagnosed with Type 2 diabetes as my HbA1C level was 54 (the lower limit is 48), it has been creeping up since I started HT three years ago. Although it is clearly mentioned in the PIL for Prostap that it can affect 1 in 10 men, the diabetes clinic nurse at the GP practice had never heard of it and had to go and look it up. I also put on quite a bit of weight and was up to 86kg although my waistline only went up by 2 inches.. I started a low carb zero sugar diet about 6 weeks ago and am now down to 81.3kg. My target is 80 by the equinox but I'm not sure I'll make that.

    The other rarely mentioned side effect is sleeplessness (which incidentally also affect blood sugar levels) and that has really bugged me since about three months after starting Prostap injections. I take Zopiclone occasionally to get a good night's sleep but it is very addictive so I try to only take one per week.

    I was very lethargic for the first few months of HT and particularly after finishing 20 sessions of RT. I started on a programme of exercise in about May 2019 and have kept at it since. I now swim a mile twice a week, walk about 20km every week and go rowing for an hour once or twice a week too. I'm probably fitter now than I was for several years before being diagnosed!

    You will get trough it.

    Good luck with your treatment and keep in touch.

    Yesterday is history, tomorrow is a mystery and today is a gift.
    Seamus
    (See my profile for more)