Just starting out

PhilPhil Posts: 7

Been diagnosed with prostate cancer . Have been waiting for results of bone scan and MRI . Thankfully there was no spread although very close to the wall of prostate . Had meeting with radiologist yesterday and decided on radiotherapy instead of surgery . Two days into hormone tablets before hormone injections, followed by 20 radiotherapy sessions , then more hormone treatment. Would like to hear of anyone else who has been down this route .

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  • SunshinedaffSunshinedaff Posts: 798 ✭✭✭✭

    Hi @Phil ,

    I just wanted to welcome you to the community and hope that you will find a lot of support, understanding and friendship here.

    I am sorry to hear of your diagnosis and I am sure it must have been a huge shock to you. Even if we suspected anything was wrong I don't think there is anything that can prepare us for hearing those words.

    On the good side, it is great the cancer hasn't spread to other areas and also the fact it has been found is good, now you concentrate on getting rid of it. I know Rob will be in touch with you, as he was also diagnosed with prostate cancer. I was diagnosed with breast cancer, so I am unfamiliar with some of your proposed treatment. I did have radiotherapy and I am on medication now.

    But even though we may all have different cancers, the impact it has on our lives can be very similar and some of the effects of treatment will be the same. There are so many lovely people here, everyone is so supportive. It doesn't matter if it's a good day, or a bad day, we are all here for each other.

    I know I can't help you with the prostate cancer, but if there is anything else you want to know, please just ask, hope to chat soon.

    Lou x

  • RobertARobertA Posts: 646 ✭✭✭✭

    @Phil @Sunshine15

    Ha ha Lou, Here I am 👍x

    Good evening Phil

    Good to hear from you. I am sorry to hear that you have been diagnosed with prostate cancer. The really good news is that it has not got into your bones and that it is still contained within the prostate capsule.

    I like your decision to go for the radiotherapy. A friend of mine decided on surgery and had to suffer the indignity of a catheter and subsequently suffered leakages for several months afterwards. I believe that surgery usually causes erectile issues too. After my radiotherapy treatment I did get pretty tired and a little sore on my skin where the beam had passed through, but nothing much else.

    My diagnosis was Stage 3T3bn prostate cancer, Gleason score 9. I was not offered the surgery option as the cancer was aggressive and already in my seminal vesicles and a lymph node.

    I formally started treatment in December 2016 with a few days of the hormone tablets followed by a hormone injection in my backside. I was told that this would shrink the tumour and that radiotherapy would commence in three months time. I was then sent to the hospital and given three little tattoos in my pelvic area which would be used to line up the radiotherapy equipment in order to accurately target my prostate. I was given a leaflet with lots of information including dietary recommendations to be followed during the radiotherapy treatment. As with you, the radiotherapy was made up of 20 sessions over 4 weeks.

    I had to arrive at the radiotherapy unit 30 minutes before treatment. I was told that my bowels needed to be empty before each session otherwise the session would have to be delayed. It sounded alarming, but I only failed it once and they were very nice about it. Upon arrival, I had to drink a cup of water so that my bladder would move clear of the prostate during the radiotherapy. That took about 10 minutes and then 20 minutes later, I would be lying on my back on the radiotherapy table. At every session they performed a scan to make sure that I was properly lined up which was very reassuring. The treatment itself only lasted a few minutes at each session.

    The radiotherapy was not painful though I did start to get tired after two weeks or so. I also experienced sudden urges to empty my bowels only to find they were already empty. Apparently, this was due to irritation from the radiotherapy. It was not a big issue and settled down a few weeks later.

    How long will you be on the ADT (androgen deprivation treatment) and were you told of any side effects it might cause? Do you know what your Gleason score is?

    I am still on ADT after 2.5 years, but because my cancer has spread beyond the prostate, I will need to continue. Even so, I live pretty normally and without pain.

    Sorry I have rambled a bit, but I hope I have been of some help. If you wish to discuss anything further, please ket me know. You are welcome to contact me privately if you prefer.

    So pleased you have found us. There aren’t many men posting, but this is a friendly and caring group of people and I hope that you will keep in touch and let us know how you get on.

    Rob

  • PhilPhil Posts: 7

    Hi Rob . Thanks for your very informative reply , good to hear from someone who has experienced what I have ahead of me . Nice to know you have come through it and live ok with no pain . Although I have been diagnosed I consider myself lucky . I had very little symptoms and it was a random blood test after a bad back . Had PSA 16 , then biopsy showed Gleason 7 and cancer very near to breaking through wall of prostate . I will be on ADT for 2 years after radiotherapy. Thanks again for your reply.

  • RobertARobertA Posts: 646 ✭✭✭✭
    edited April 19

    @Phil

    Hi Phil

    Thank goodness for your random check. I always had a routine blood test including PSA every year before my diagnosis, but my timing and the Gleason score were not good. Even so, it would have been much worse if I had not had the test at all. I always urge my older friends to get the test as the possible risks associated with prostate cancer are often underestimated. Hopefully, that is changing.

    I guess you have been told of the possible side effects arising from ADT. I get a little tired and have occasional hot flushes but I have managed to keep my weight under control through improved diet and walking and I use exercise bands to combat the potential loss of muscle and osteoporosis and they have been effective.  All the best.

    Cheers

    Rob

  • PhilPhil Posts: 7

    Thanks for the tips Rob , I haven't really looked into the side effects of being on it long term . I wasn't really aware of weight gain or osteoporosis. Think I might need to get my walking boots out and cut down on the takeaways !! Take care . Phil

  • RobertARobertA Posts: 646 ✭✭✭✭

    @Phil

    Ha ha, you sound pretty positive and that's the main thing.

    All the best

    Rob

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