Prostate cancer

[ringading2]

Does anyone have experience of this?

My dad has just been diagnosed. He's 55 and his PSA is 85 (should be below 4). Waiting to see if / where it has spread but my gut feels it's not going to go be good news.

Desperately hoping it will be (many) years not months.

I'd welcome anyone who has experience of this please!

Macmillan are fab by the way - they can translate the jargon and reassure where needed and help patients and family make sense of the process. They have a helpline also that you can ring and ask questions and they really don't mind and try to help.

Not meaning to upset you but younger men do die of it.

My husband was 52 and died last year at 56.

Wishing your Dad better luck x

Thank you @TheHoneyBadger it's the waiting that's so hard!

@Sadbadglad really sorry to hear about your husband. I am really aware / worried that the outcome might not be good.

Was your husband diagnosed at 52? It's just so young. Really sorry for your loss.

I hope you're doing ok op, the waiting for results is such a horrible, stressful time. And I really hope you don't mind me hijacking your thread but I was hoping to ask @Hohofortherobbers a question if that's ok.

My dad had his prostate removed in 2019. The first couple of PSA tests after that were pretty good (0.04 and 0.06). Two months ago his test showed that it had jumped to 1.51 from 0.06 in 6 months and I was extremely worried by such a short doubling time. He's just had another test two months later and the rate of increase has slowed right down again as it's now 1.53.

I know you probably can't comment on individual cases but I just wondered whether it's usual for the rate of increase to fluctuate so much? It seems strange that it jumped so much in 6 months but isn't carrying on at that rate.

Yes sadly he was only 52 when diagnosed. His PSA was 37 and the bone scan showed quite a few bones where it had spread.

Sorry to be the bearer of bad news but I feel people should be aware that whilst it is mainly older men it can kill younger guys.

The odds are in your dads favour though

Rollercoaster warning

My grandad was diagnosed with prostate cancer, can't remember numbers but silly high I think, he had radio therapy and he's still with us 5 years later. Only found it because he was badgered into a full health checkup.

My dad got checked and he had it too, he had surgery to have it removed about 3 years ago but I don't think her was officially cleared before he died of something else at 56 5 months ago.

My uncle (dads half brother, not related to my grandad) also had it just after my dad and had surgery to remove it. He's still alive and he is early 50s

My brother and male cousins are all marked to be checked early and often, it's apparently "common" in Afro Caribbean men which they all are.

@belimoo sometimes PSA can fluctuate for benign reasons, a UTI or recent intercourse, but a rise after prostatectomy is worrying, did he have post surgery radiotherapy to the prostate bed? He may be recommended a PET scan to see if there is any residual disease which is now 'waking up', but a PSA of 1.5 might not show anything yet, he may be monitored a while longer to see if it rises further.

@Hohofortherobbers Thank you for the reply. He didn't have any radiotherapy after the surgery but they are talking about that being a likely next step given the PSA rise.

When we saw the jump in PSA in a space of 6 months we were alarmed and his decision to go ahead with radiotherapy was partly based on the fact it seemed to be increasing so quickly. Now that we've had another result showing that it's slowed down a lot I'm just wondering whether it might be a hasty decision given potential side effects.

I'd just love to have a crystal ball and know how quickly it's going to increase and whether it would speed up again without further treatment. I'm not sure he'd cope well with the watch and wait approach though, I think he'd just worry.

Thanks again

HI everyone,

Just to chime in, my dad had prostate cancer and I learned that the best way to tackle this is with a high quality, well reported MRI scan.

We took dad for a scan in Harley street, it was like £250 and the 2nd opinion differed to the first, NHS, diagnosis.

We were then able to take that report back to the NHS to challenge the diagnosis - the outcome was luckily favourable. Dad is fine now with NED. I'm so glad we got a 2nd opinion! Recommend you do the same. You need the gold standard of MRI reporting to accurately diagnose prostate cancer

Unless I'm using the search facility wrong, in which case I apologise, the above post is the users first and only post so do ignore. It just read like the opening of a sales pitch to me.

The NHS will be fine.

@TheHoneyBadger thank you!

His bone scan is already booked in for Friday so I'm confident things will move fast.

He suggested paying privately initially but the cost of chemo etc is tens of thousands and was advised even if you have a private diagnoses the NHS would still need to repeat the testing themselves

Many men die with prostate cancer, rather than of it.

My father died at 62, but his brother is still here, 20 years later, having been successfully treated. They both had excellent NHS treatment, it's just that Dad wasn't caught early enough.

The waiting is always difficult, but once you know what the options are, then you can make decisions.

@EBearhug thank you. And very sorry for the loss of your Father.

I have a horrible gut feeling that this hasn't been caught early. If you don't mind me asking, do you know how long you had with your dad between diagnosis and him passing away?

He was diagnosed at a general check-up because he turned 60 and hadn't seen in doctor in years. He was 62 when he died. The prostate was responding well to radiotherapy, but by that point, it had spread to his spine. He actually died of a heart attack, but I don't think he'd have had that if the cancer hadn't been there - but who knows?

Please remember this was all over 20 years ago - that's a long time in medicine, and there have been loads of improvements in testing and treatment since then. There may be options available to your Dad which didn't exist two decades ago.

@EBearhug thank you for sharing and sorry again for your loss.

Cancer is a bastard!

Not sales pitch - my experience. Dad was an NHS patient throughout and simply went fr a private '2nd opinion' scan. They are good value for peace of mind. The NHS treatment was amazing. However, my experience is that diagnosis, and 2nd opinion reporting of NHS scans was the key to our success.

@ringading22 DH was diagnosed with prostate cancer at the age of 55 ten years ago. He had gone to have a biopsy privately as he was convince there was something wrong, despite doctors ignoring his worries. It was caught early, he had brachytherapy as an outpatient and is now completely well.
Because it was treated early, he was also able to avoid common side effects such as incontinence and impotence. It really is one of the 'best' cancers to be diagnosed with.

Thank you @KittytheHare I am just hoping so so so so much that we have a similar outcome! Glad your DH is better and well

Feeling sad as my Husband was one of the unlucky ones

@Sadbadglad really sorry for you loss :( it's just so unfair