That was not in the plan.

Franci , I was getting a bit frustrated with the private care setup and lack of a support network. The oncologist was fine, apart his attitude to me wanting PSA tests at what I consider relevant events. I wanted a test before I started the injections but it wasn't forthcoming coming so I got around it a different way. As it turned out my PSA had gone from 6.7 to 13.4. Not sure all my messages were getting through.

Combined with my GP throwing a wobbly at the consultants sarcastic letter and my GP saying any cancer issues were not their problem while I was under private care,I asked for a referral back on the NHS, even then there was an issue with the private /NHS secretary.

So I saw the new but very wise and experienced oncologist yesterday. As I half expected Abiraterone is not available to me  on the NHS, I don't quite meet the criteria. I asked what was better Abiraterone privately or apalutamide on the NHS, he said there was little to choose between them in my situation. 

There is a big difference between private and NHS as regards appointments and setting, but the NHS does offer a better support network. The downside of the NHS is no free tea and biscuits no free parking and a longer wait in the waiting room. The only downside of yesterday we got a £25 parking notice, long story and we are appealing.

Thanks Chris 

Hi I think your GP saying they do not work with private care is very strange. My husband is under a urologist privately at the Royal Marsden which is about 45 mins away on public transport. We however wanted PSA testing undertaken at our local hospital and our consultant wrote to the GP who facilitates this three monthly as well as any routine prescription suggested by the consultant. It has been seamless. Oh and the GP undertook a well being appointment following surgery.

Edited by member 09 May 2025 at 15:41  | Reason: Not specified

Hi.

I'm not sure I'm in the right place here but...anyway.

I'm 49....healthy guy....gym goer....but a recovering alcoholic.

I've been  on NHS Testosterone Replacement Therapy for over 3 years and get my PSA checked every year.

It's jumped from 1.9 to 4.0 and now at 5.6 

I had an MRI 2 weeks and results in 3 days. I've been feeling rotten for a while now....groin ache and leg spasms. Mucus in my stools and eractic peeing.

Should I fear the worst?

Thanks 

Hi guys, I had a zoladex injection in Feb 2025, I swapped to decapeptyl three monthly injections in March 2025, next decapeptyl is mid June.  I started apalutamide a week ago. Also started vitamin D two weeks ago. I have had a hip and knee problem for a number of years, osteoarthritis in the hip and a trapped nerve in the shoulder. 

The last week pain in all those areas has increased and I woke up this morning with pain in the shin and upper jaw joint, and a slight pain in the other shoulder joint. I do have a bone density scan on the 9th June. 

Has anyone had a similar experience of bone pain so soon after starting similar meds. 

Thanks Chris 

Hi guys, I can't believe it is that long since I updated this post, may have been the 502 issue.

I have been on decapeptyl injections and apalutamide for around six months, I also take a vitamin D tablet each day. I think I turned down the alendronic acid. I have grown a very small pair  of boobs not big enough to be noticeable. I still get hot sweats, I am having acupuncture which I think is helping, the sweats are not to bad and only happen in the late evening.

About month two the mood swings were quite bad , perhaps a bit of depression in there as well. I told my CNS that I would be talking to my oncologist about quitting the meds and regaining quality of life over quantity of life, she suggested dropping the dose down to 3 or 2 tablets. After a month on 3 tablets the mood swings and depression had just about gone. Now three months on from that point an back up to 4 tablets and that issue is okay. 

The fatigue and tiredness continues, fatigue usually after my morning walk but can strike at any time. After my morning walk I can come home and fall asleep for half an hour. We are having some work done at home and it seems keeping busy is keeping the fatigue away I still fall asleep in the evening.

The lack of labido is not great but that is what it is. 

So it was a bumpy ride but nothing I haven't handled, I was determined not to have HT and accept the alternative option. Now I have settled into yet another "new normal". You can always stop the meds , but you may not be able to restart them, you can reduce the dosage but you will need to talk to your oncologist.

From someone who was dead against HT , give it a go.

Just had my PSA back <0.03,never had it that low before, I was 0.03 after surgery but not less than. Telephone consultation with oncologist on Thursday. 

Thanks Chris