Is it Ok to postpone further injections of Zoladex LA even for years as long as the PSA stays below 0.1 and no real PSA velocity.?

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I was diagnosed 9 months ago with prostate cancer Gleason Score 9 Group 5 perenial, so aggresive but not yet metastatic. Because of my age (81) and complex medical situation the professor told me it would be too dangerous to undergo a prostatectomy. Instead I was given Zoladex 10.8 mg injections, the first on 2 Sep. 2024, the second 2 Dec. 2024 with the third scheduled for 3 March 2025. But due to severe disabilitation side effects I told my GP that I had decided to postpone further zoladex injections after the second on 2.Dec. I based that on the fact that my PSA went from 15.6 down to 1.4 then 0.153 then 0.070 within 6 months from first Zoladex injection. My 3 predominant sideffects are 1. serious problems with walking specially even slightly uphill. My GP has signed my application for a disability parking permit now, 2. Not able to sleep more than 2 hours each time but in more episodes during each night. Oxycondrone 5 mg helps here nothing else so far. 3. Profound bladder incontinens with a full incident every single time I get up from a chair, - the fluid just falls out. The last which is hot flushes, about 2 per hour day and possbly night, does not worry me at all. Thanks, Valkyrien

  • Dear Valkyrien,

    Thank you for getting in touch with us and welcome to our Online Community. I’m Alison, one of the Cancer Information Nurse Specialists who work on the support line here at Macmillan.

    It’s good to hear you PSA has reduced to less than 1, although I’m sorry to hear of how the side effects are affecting your day-to-day life.

    Unfortunately, we can’t recommend stopping treatment as we don’t have access to your medical records. We would advise that you make an appointment to see your consultant to discuss your options with treatment. It may be that your team could offer an alternative to Zoladex which may improve the side effects you’re experiencing.

    Side effects from hormone therapy can really affect your quality of life, so finding ways to reduce and manage them can help.

    Hot flushes are common, but it’s important to speak with your doctor as there may be something they can do to help. You can also make some lifestyle changes such as wearing cotton clothes and using cotton bedsheets, using a fan to keep rooms cool and ensuring you drink plenty of water and avoiding caffeinated drinks. Some people also find complementary therapies helpful, particularly acupuncture. The Complementary & Natural Healthcare Council can help you find a therapist in your area.

    Reducing testosterone levels can cause a decrease in muscle tissue and joint pain and this can affect your mobility. A gentle exercise program can help improve your strength and mobility. You can use the Cancer Care Map to find an exercise program near you, and the NHS have sitting exercises that might be helpful for you too.

    This can also affect the nerves and muscles in your bladder, so may be why you’re also experiencing some urinary incontinence. Pelvic floor exercises can help improve the muscles in your bladder, but also speak with your GP and ask for a continence assessment where you can ensure you’re getting appropriate products.

    It’s not uncommon to have difficulty sleeping due to cancer treatments. Again, speak with your GP to see if they’d suggest any medication to help you to sleep better. Sleepio is an NHS app which might also be helpful for you.

    You might also find our prostate cancer forum helpful as you can talk to others who have had side effects from treatment. Prostate Cancer UK also offer a range of support services.

    It might help to talk through your concerns in more detail and be able to ask questions, so please don’t hesitate to call our support line where you can speak with one of our nurses.

    Take care,

     

    Alison,

    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. 

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