Anxious wife !!!!

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My husband has secondary cancer from prostrate to spine and was diagnosed on 15th Sept 2021 . Due to a catalyst of errors at the hospital his biopsy that was scheduled for 21st Nov was cancelled ! We are now back to a waiting list with no idea of new a  date . He is on a 28day cycle of Degaralix and nothing for his bones 

I am escalating this procedure but should I be worried about the time delay from diagnosis??? Everything takes so long 

thanks  ( a very anxious wife who’s not getting any answers 

  • Hi  and a warm welcome to the online community although I'm sorry you've had to find us.

    I can't help with your question about whether the time delay from diagnosis to having a biopsy is anything to be worried about or not but I noticed that your post hadn't had any replies yet.

    I hope you don't mind me suggesting that you copy and paste this into a new post in the prostate cancer group as I know there are lots of men there who's prostate cancer has spread and they will be able to give you an idea of timescales in their experience. If this is something that you'd like to do clicking on the link I've created will take you straight there where you can start a new post in the same way as you did here.

    You might also like to think about joining the carers only group which is safe and supportive place to share your worries and emotions with others who are caring for someone with cancer.

    Wishing you and your husband all the best

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hello Ferret, so sorry to hear about your husband's diagnosis and the trouble you are having regarding the biopsy. I know it is hard waiting and not knowing but your husband has started on hormone therapy already which is good and the first line treatment, nothing else would be given to him for a few weeks/months yet anyway as you have to wait for the hormone treatment to kick in so I would say that the delay although terrifying would not be making much difference but that is just my opinion and I am obviously not medically trained. Please check out my profile for potential treatment plan your husband may have as I have a similar diagnosis. May I ask how old is your husband, is he able to get out and about. Take care and any questions just ask/message me x

    Regards

    Paul

    "Diagnosed March 2021 at 38 years old with stage 4 metastatic prostate cancer, my journey so far is on my profile"

  • Hi Paul hubby is 58 and ex military. He’s had the biopsy and now we wait for the results . I’m expecting a high score ! He can move  about with crutches but is extremely stiff - back sternum hips . He cannot feel his lower half ( maybe compression on his nerves ) and describes it as being encased in concrete . Im hoping oncology can offer some relief with this . He is on 28 day hormone injections Degaralix and Diazepam to relax the muscle . Nothing else . We are totally guided by the consultant and await the next stage 

  • So sorry to hear about his pain it's horrible, mine was similar but not as extreme as that before I had my operation. I was using naproxen and after op my go to pain relief was oral morphine, it's brilliant and I still have it on repeat prescription and have a good stock just Incase haha hopefully he responds well to the hormone treatment then gets a plan put in place  

    Regards

    Paul

    "Diagnosed March 2021 at 38 years old with stage 4 metastatic prostate cancer, my journey so far is on my profile"

  • Hello Ferret1385, my husband has the same diagnosis at stage 4 so I understand your anxiety and I’m so sorry your husband is in so much pain. This must be so difficult for both of you. Sending lots of love xx

  • Hi Paul 82 

    Biopsy done and we’ve just had a call to say he is stage 5 prostrate cancer ?? I assumed 4 was the highest scoring . We are now waiting for chemotherapy which will be the most aggressive type . He is in pain with his shoulder ribs hips down one side so hoping they have treatment to ease this. 

  • I thought the staging only went to 4 myself, meaning the cancer had spread to other parts of the body or organs so what is stage 5 ? Hopefully chemotherapy will elevate your husband's pain and help suppress the tumours

    Regards

    Paul

    "Diagnosed March 2021 at 38 years old with stage 4 metastatic prostate cancer, my journey so far is on my profile"

  • After further discussion with the Macmillan nurse the score is the Gleason grade of 5 his score was 9 with 10 being the highest . It is the growth rate . So we know that it is aggressive and hope that chemo will help . He is numb from the chest down which doesn’t help with toilet duties etc . There must be something pressing on the nerves or spinal chords ? Anxiety now on a high too x

  • Ah so sorry. I myself have stage 4 metastatic cancer with a Gleason score of 9 and tumours in my spine and pelvis.  I hope you can get some support from the macmillan nurses regards helping your husband with pain relief and mobility. Anxiety is normal, I have been to some dark places and managed to come through it, there are some useful mindfulness apps and please talk to the nurses, they will support you aswell as your husband, or you can message me anytime. You are both in my thoughts x

    Regards

    Paul

    "Diagnosed March 2021 at 38 years old with stage 4 metastatic prostate cancer, my journey so far is on my profile"

  • Thank you 

    Chatting on this site is the one thing keeping me sane at the moment .Our children are similar ages but the youngest doesn’t know . Have you discussed the situation with with your children . I’m mixed about doing it and when is the right time. 
    so many questions sorry