Could it have been different

 Sparkied3982b On the bright side, the hormones should help to control the cancer.

Looking at your timeline, PC should have been picked up in November 2023.  The alarm bells were ringing then. 

I was on active surveillance for a couple of years and was told once my PSA level reached 12, they would intervene.  So looking at your PSA levels, you would have thought it could have been picked up earlier.

Did you have any symptoms?  I didn't.

I ended up having hormones and Radiotherapy, as I couldn't have surgery because of my other health conditions. 

I hope the hormones help to stabilise your Cancer.  I know quite a few men who are only on the hormones and they are living a good quality of life.

Take care 

You’ll drive yourself mad with what if’s but if you are serious you will need to upgrade a what if to a complaint via the PALS system. But it sounds like you’ve taken charge of your future life with both hands.

Choosing just HT is a good start if the HT is working well on you.

I’m sure there’s plenty of things you could have done to analyse all the data we all get thrown at us but in the end it’s what you’re left with that counts.

We are full of experience about all the things you’re worried about and will support all your efforts to understand and move on.

I’m sorry you’re in the situation you are but like me you are stuck with it.

Keep asking questions and let it all out here.

We walk together.

I never had any symptoms; it was just done as full blood work to help diagnose Fibromyalgia.

Hello Sparkied3982b 

My understanding is any PSA for a man between 50 and 60 over 3.5 or between 60 and 70 over 4.5 is a matter for concern - not always treatment but should be investigated.

In November 2023 you should have had a biopsy and MRI scan.

Here's some interesting information from Prostate Cancer UK.

Guidelines/psa-blood-test-nhs-guidelines-and-prostate-cancer-uk-s-risk-checker

Don't forget this is my personal opinion and I am not medically trained.

I wish you well with the Hormone Therapy (I am on it lifelong) and I am aware there are 2nd generation HT drugs to back up the ones I am on if my PSA rises again.

You can always keep an eye on Prostate Cancer trials yourself here:

Cancer/research-clinical-trials - Prostate Cancer.

I hope the above helps - happy to chat.

Best wishes - Brian.

Sparkie, what a devastating experience.  That fretting can't undo it. I find myself with a third disease, PCa, and so keeping a tight grip on the ever more complicated management and knowledge of these health issues is what I cling to - to be informed and to participate in the decision making.

So many of us had no symptoms, or just mild pee-related ones easily brushed off as advancing age.  It's the harsh unfairness that some have blood work that kicks off the investigation, often by chance, as was my case with a modest PSA of 6.  And too many others are diagnosed far too late.

If ever there was a story that illustrates why a campaign of national screening, and better defined Gold Standard action plans, yours is it. My GP leapt into action, just because of elevated PSA and family history. With your PSA history & DRE alone, it's shocking it all happened so late.

The tales on this and other sites of how we come together and support, and cope, and continue to live, are uplifting I've found. I hope you can find the positives that others have bravely shared here.

You haven't mentioned your age, and that may have been a factor in the decisions you've endured.

 Jeff (58 and 11.9 months)

Jeff, fingers crossed for your biopsy results!!

I am 57

Hello sparked, I'm sorry to hear of your diagnosis and the question, 'Could it have been different?' This is a question that has plagued us on and off since diagnosis 3 years ago. 

My husband has a strong family history of prostate and breast cancer. We knew this and so he had annual PSAs for years. Over that time we saw it rise steadily but always not too much over the age barrier. We were referred to urology quite a few years ago. At that time they did not do MRI before biopsy and the biospy process itself was through the back passage, very hit and miss in accuracy and carried a risk of sepsis. The DRE was negative and my husband had no symptoms. He opted to wait it out and be monitored - there was no such thing as active surveillance then..

A few years later, his PSA had increased again by this time to, if I remember correctly, about 7 or 8, so we were referred to urology and saw the most rude, arrogant doctor I have ever encountered. He told us to go away and not come back until my husband's PSA had reached 10. It reached 10  in 2022 and went back to urology - completely without symptoms. He was diagnosed with PC T3a N0M0 and treated with the intention to cure - note intention, no guarantees. He had RT and HT.

We have often asked ourselves whether the cancer might have been caught earlier and treated with a greater certainty of cure.

But, none of us can turn the clock back. At the time I considered writing a letter of complaint to the hospital about the specialist's rudeness (he suggested that there was nothing wrong with my husband's elevated PSA and it was just me worrying! I told him not to patronise me!!!) But, we didnt follow up and here we are now.

Would things have been different had everyting been actioned all those years ago? I'm not sure because treatments for PC have developed remarkably rapidly and effectively in the last few years. I think we could all go mad if we keep looking back at the what if's rather than look forward and plan to do the best with what we are faced with.

 As others have already said, I do agree that you have grounds for taking your questioning and possible actions further - especially as you are still younger than a lot of us. Any complaints, actions or claims that you make will definitely be to the advantage of those following us on this journey.  Any legal claims might help any financial concerns for yourself, your domestic and work situation and your family members if settled and paid.

Whatever, you decide to do, please rest assured that you have friends posting here who will always be non-judgmental and offer you advice from their own experiences but not necessarily be able to offer the expert medical and legal advice I think you may need. There are patient advocacy services out there who might be able to help you? POWhER is one that operates in some parts of the country ans I think, but am not sure, some of these services are at no cost to the patient?

I do wish you all the very best on this journey and sincerely hope that advanced medical knowledge and pharmacology will give you many more years than you have been told to expect.

WW, you have a way with words!  

I have read all the above and can certainly empathise  with all of the emotions.

This is going to turn in to a bit of a ramble as much to clear my own head as anything else.

Firstly I was diagnosed in 2023 since which time I have been treated with HT only.Other than knowing what my PSA level was then and what it is now(levelled off and not as low as hoped for) I cannot quote all the various technical terms as many others can. I did not want to know what my PSA was at 3 month appointments other than that it was reducing and the HT was doing a job.Perhaps this is stupid or ill advised on my part but I don’t have the depth of knowledge to make sense of it all particularly when you look at the range of treatments and outcomes for different individuals.

Nor do I much like the discussions regarding the treatment options available when my view is that the oncologist is better qualified than me to point the way forward.Once again possibly a silly attitude.

Anyway it served me OK with no great anxiety and the ability to enjoy hobbies and family life for18 months or more.

For whatever reason my spirits have hit a low over  the last few months and I don’t know why.Its just a grey blanket that descends out of nowhere and obscures any logical conclusions that I have previously achieved.Its a rotten feeling as many will know so the battle is to recover in this respect.I feel that I need some counselling but not within a cancer related context,great though this Forum can be.

Somewhere away from family as well who are great in every respect and could not do more.

My last comment on the “what ifs.”  Would I have been better off being diagnosed with a worrying PSA level a few years ago or would that in itself cause some anxiety over the same period as life went on in blissful ignorance.Possibly not given my tendency to worry.It goes back to the business of the patient needing to choose treatment options.

As expected this has turned into a bit of a ramble but that’s the nature of the beast when trying to get your head around such a change in one’s life.

Sorry for the ramble .I just want to appreciate the little pleasures of life once again instead of being over obsessed too much of the time.

I