My husband's prostate journey

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Hi everyone I'm new to this page so please excuse me if I ramble on, my hubby was diagnosed DLBCL 2 yrs ago, he went into full remission last summer we were absolutely and looking forward to getting back to normal we had just gotten over that when he was diagnosed with prostate cancer, so at end of January this year he had his op, he recovered well, no problems etc.  He was back for his check up today, his PSA is through the roof so it seems he has cancer somewhere in his body, we are both devastated, so it's back to waiting on scans etc.  My head is fit to burst, I'm trying to be very brave for him, but I just want to howl at the moon, he is very matter of fact about everything, so fingers crossed for him for his upcoming battle, thank you for listening to me

Linda

  • Hi Linda,

    I am so sorry to hear your story. I know how you feel, we were there 6 months ago when my husband was diagnosed with advanced PC. I was cold for 3 days and could not sleep eat or sometimes even breath. I promise that when the waiting time will be over and the diagnosis complete, you will meet the oncologist and a plan will be put in place. PC even advanced one has so many routes of treatments that work and work well. I can tell you that my husband started hormone therapy with injections every 3 months and daily tables. His life is almost normal. He swim everyday for an hour, go to the gym, bake and look after me and our grandchildren ( they are tonight sleepover with us).  Next week in addition to the HT he start 6 sessions of radio therapy.

    What I am trying to say that our life return to normal. He has the treatment and some side effects, mainly fatigue, but apart of this his quality of life is brilliant and is not different than a year ago. 

    Please take a deep breath and trust that when the waiting time for the scans are over and treatment start, life will fall back into a routine. A new routine but similar to the old one plus the treatment.

    Linda, this community here is fantastic. People are very generous with their knowledge and share their experiences. This is a place to share your deep fears, to moan, cry and many time to lough. Lots of good people that give you virtual hugs and understand how you feel because they share the same problem.

    Keep us updated and keep positive

    Lots of love

    Dafna

  • Hi Dafna thank you so much for your reply, I am still in shock, the last two years have been a struggle for him, to just get over one form of cancer and now to hit another well it's like a dark cloud hanging over us, I know we will get through this but at the moment I'm heartbroken for him.  He is a very laidback man, he will probably snore his head off tonight and I will never get to sleep, all the worst case thoughts will go through my head, but hopefully he won't be waiting long for scans etc, thank you again for your encouraging reply I will let you know he gets on

    Linda

  • Hi Linda

    What were his original figures before surgery.

    IE Gleeson, PSA , MRI what did that show , was the tumour contained within the gland.

    What is PSA now.

    The more info u can give helps give u best advice 

    Best wishes

    Steve 

  • Hi Steve his PDA was 14 before the op which he had at end of Jan, it is now 69, in fact the surgeon said the cancer was quite small size, so we are really in shock, sorry I have no more info for you, they have started him on hormone tablets today and in the next few weeks he will have jabs,  he was only getting one lot of cancer and now this,  I am just all over the place at the moment, and yes they did scans before and everything was good, so don't know what has happened, but anyone out there who has gone through something similar I would appreciate any advice you could give before my head explodes,  really appreciate your help Steve

    Linda

  • Strange Linda

    PSA not originally that high and if tumour small then surprising that has leapt up.

    Would be good to know the Gleeson to see how aggressive it was if it was aggressive at all.

    Only other thing PSA 69 could be a blip/error, could be worth getting another but obviously the scans should show more.

    Good luck and see what others say

    Steve 

  • Thanks Steve, yes I do remember the surgeon saying even though it was small it was aggressive, so we will have to wait for scans etc,  hope we don't have to wait to long

    Linda

  • Hello   - Linda - A warm welcome to the online Prostate cancer Community - I am so sorry to find you here.

    From what you have said - it would appear your husband has had a Prostate Cancer diagnosis - opted for surgery, had the Prostate removed and then his PSA has risen from 14 before the operation to 69, 3 months later.

    I am not a medical man but that would leave me to believe that the Prostate was not removed with clear margins (assuming that the gland was removed before any spread) and that there is some Cancer left in either the Prostate bed or surrounding tissue.

    So he's been started on tablets (I assume a 28 day course of Bicalutamide) and 2 weeks after the start of these he will have his first Hormone Therapy injection. He's been put on this medication to slow/stop the growth of any further cancer cells.

    In a nutshell Prostate Cancer lives on Testosterone. If your husband has none or very little - the cancer cells can't thrive. The Hormone Therapy will stop the Cancer growing in it's tracks and his PSA will come down very quickly. Once he's been on this for about 3 months his team will be able to work out what's going on and work out if further treatment is required.

    I have been wrong before - but I think it's very treatable so please try not to worry - he's in good hands and he's started treatment. 

    If you have any questions or require any further details or information regarding the above please don't hesitate to stick a post up - we as a Community are with you in this battle.

    Best wishes - Brian.

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  • Hello Hibbie and welcome, though sorry you have to be here, about a third of men after having a prostatectomy will get a biochemical relapse due to not all the cancer cells being removed at surgery, so your team will be well aware of this possibility and treatment can start quickly, as you have found, hormone therapy tablets > injections with radiotherapy, most likely, to follow. Linda that there was nothing on his pre op scans that showed cancer was anywhere else and only in the prostate would suggest only a few cancer cells remain and with your husband on the most effective treatment, I would be very hopeful of a good outcome, Best wishes.

    Eddie

  • Hello Linda.

    A warm welcome from someone whose husband is also on this rollercoaster journey. All the other good people have given an excellent summary of what has probably happened and I will chip in from our experience of a rising PSA on 3 separate occasions after initial treatment. Firstly, the fact that your husbands PSA has risen to a high level after surgery would indicate that some of the little blighters got left behind or have escaped to somewhere else in the body and are probably aggressive. I would push for a PSMA PET CT scan to identify exactly where they are lurking. Second, the hormone therapy is usually very effective at reducing the testosterone which is mainly made in the testes, but can also be produced elsewhere in the body. A combined hormone therapy approach will stop it from both sources but to make sure that it is working you can get a testosterone test. Thirdly, radiotherapy is very effective at dealing with any cancer cells which might be left behind. It could range from being very targeted if it is found in a small isolated place to quite a broad area if a belt and braces approach is needed. This salvage treatment is usually sufficient to deal with the cancer once and for all. For a smaller number of men further treatment may be necessary but with the advances that have been made in prostate cancer treatment over recent years there are still plenty of tools in the toolbox. One technique depends on whether your husband has the right kind of genes so a question to ask at your next meeting is whether a genetic test has been done on the biopsy sample.

    Emotionally it can be difficult dealing with this rollercoaster so make sure you look after yourself as well as your husband. There is plenty of help out there if you want it from a range of different sources and this forum is good at signposting you towards it.

    Finally, don't panic. Your husband's situation is, unfortunately, a well trodden path. Please come back with any questions no matter how small or silly you might think them, we have all done it.

  • Hi Millibob yes he had his surgery at end of Jan and we thought everything was good, but it would seem not, but the replies I have received from everyone here have made me feel more relaxed and hopefully we won't have to wait to long for his scans. Thank you for your reply I will keep you up to date on his journey

    Linda