Rising psa whilst on enzalutamide (1800)

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Hi, 

I will give you a brief history of my 82yr old Dads journey with Advanced Prostate cancer:

Diagnosed 3 years ago with extensive bone & lymph

Started on 3 monthly hormone injections and biculutamide

Further scans showed mets to liver around 6 months ago

Also hospitalised with spinal cord compression 5 months ago

Started on enzalutamide 3 months ago. 

At Dads last appointment with his oncologist, we were told his psa  has risen to 1800. It had reduced to 300 last month. He has kept him on the enzalutamide, pending further scan this month. 
I know the basics of high psa levels but I’m not sure what effect this has on his cancer. On a letter from the oncologist a few months ago, it stated that he had less than 6 months to live. This was before he was put on enzalutamide. 
Does this latest information mean that he still only has a few months to live? As his carer, I feel like I am on a roller coaster, not really knowing what stage we are at. It is hard to ask questions as Dad really doesn’t want to know and I don’t want to upset him so I just stay quiet. I am just very confused as to where we are at with everything. I would just like to know what the outlook is for my Dad. 

I nursed my Mum through cancer but everyone was straight talking and very honest about everything and I found this a lot easier to deal with and also adapt to over time. 

  • Hi ,

     

    Thanks for reaching out to us. I hope you are fining our online community groups helpful and supportive.

     

    I’m sorry to hear your Dad’s PSA level has been raising again.  I appreciate how difficult the uncertainty must be for you. Supporting a loved one can be rewarding but also physically and emotionally exhausting, and many people describe feeling like they are on a roller coaster.

     

    It’s difficult for us to say what the raise in PSA means for your dad but generally, a rising PSA is often a sign the cancer is becoming more active and the current treatment is no longer working. Depending on his symptoms and the treatments he has already had, the oncologist may suggest an alternative hormone therapy, or they may feel this could have little to no benefit and stop treatment completely.

    All your dad’s options should be discussed with him in more detail. Every doctor explains and gives information in different ways, often taking the lead from the patient. By this I mean if he is asking lots of questions or asking direct questions about prognosis and time frames, they will answer these but if he appears more on a “need to know” basis during his appointments they will tailor the information for him.

     

    It is often the case for a loved one or carer to have more questions, especially surrounding prognosis, than the person with cancer. With your dad’s permission you could speak to oncologist on your own. This can sometimes have its own problems though as you would have more information and information your dad doesn’t want to have.

     

    Sometimes how quickly things are changing can give a better indication of how long someone has left. As his condition starts to deteriorate over several months, that would suggest months prognosis. As things start to change more over weeks this would suggest weeks and when you start to see a significant deterioration each day, that could suggest final short weeks or days left.

     

    Although difficult reading, being prepared can help you feel more in control. You may find our information about what to expect in the last few weeks and last few days useful to look through. It can sometimes help more to chat through this information. You are more than welcome to give our support line a call if you think this would help.

     

    Marie Curie also have information about what to expect.

     

    It’s also important to make sure you are all well supported. There is lots of different support available at home. If your dad isn’t already known to the community palliative care team, I would encourage him to ask the GP or oncologist to make this referral for him. You can read more about the type of support they can offer here.

     

    I cannot stress enough the importance of looking after yourself too. Often as carers our own needs get pushed to the bottom of the list. Here are some hints and tips to help get you started, even just finding a few minutes in the day to focus on you can make a huge difference.

     

    I hope this helps and please get back in touch if you need any more information or support.

     

    Best wishes,

    Amy C, Cancer Information Nurse Specialist

                                                                                         

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

     

    Ref:AC/SMc