Is my Dad's cancer back?

Has he been having his PSA tests regularly? Has the number been rising? PSA is usually how you know that the cancer is back - not a bad belly.

Thanks Barry, he's due on the phone any minute so we'll see what the recommended next steps are very soon.

Thanks for your response Bri. Unfortunately, there are next steps in this case.

My Dad has been over tonight after speaking to the consultant.

In short, they have confirmed that of course the levels are low but they’re very concerned about the rate it’s increasing. In usual circumstances they said they wouldn’t be having this conversation with the levels as they are, but due to the quick increase they are concerned.

He’s having an MRI scan within the next two weeks to try to locate exactly where it is.

If they manage to locate it (unlikely due to the low levels) then he has the option of a treatment to try to get rid of it, although there’s no guarantees. He didn’t go into exact details of the treatment but will do if they locate it. I think it’s called hifu treatment or something.

If they don’t manage to locate it then he will have testosterone suppressants.

Edited by member 01 Jul 2019 at 20:31  | Reason: Not specified

Thank you Barry, that's really helpful. I shall let you know if he's going to have HIFU.

We're in Peterborough, Bri.

You're right, a rise from 0.04 to 0.05 in 3 months doesn't appear to be a huge rise on the face of it but they expressed concern about the speed it's rising. All I can say is what he has been advised, he was <0.02 and then it went to 0.04 3 months ago and now it's at 0.05.

If he has HIFU he's been told will go to a hospital in London for it.

I don't think he's particularly keen on the idea of HT but he will of course do whatever is necessary.

In all honesty, he seemed a bit shaken and upset when I saw him last night and it's extremely rare that I've ever seen him like that before so I don't know if he's keeping something from me anyway. I think he was hoping his levels would be back to <0.02.

He does tend to keep certain details from me (I think he's worried about how I will deal with it). As a bit of background, my Mum was diagnosed with breast cancer when I was 13, I lost my Mum three days before my 17th birthday and that sent me off the rails a little bit. I'm now 31 so it's a completely different time of life for me but Dad's prostate issues have been going on since I was around 23 so cancer has been an almost constant thing for me since a young age. I know he keeps certain things from me even though he doesn't need to, but I'm positive he lets me know anything important.

Dad's consultant did say that they usually wouldn't be having this type of conversation with him or even discussing these options with his levels so low, but due to him already having surgery so having no prostate and also having had radiotherapy, they are concerned by the sudden rise.

I'll keep this thread updated as much as I can.

Edited by member 02 Jul 2019 at 10:30  | Reason: Not specified

Thanks Barry, yes it would be on the NHS so I would assume it to be at UCLH. We'll know more after the MRI scan.

Not driving wouldn't be a problem, Peterborough has a direct line through to Kings Cross on the train and UCLH is only a short distance from there so I could get Dad there and back with ease without having to stay, unless he needed to stay of course.

I'll have a read up about HIFU tonight as well when I get a second.

I really do appreciate the help. Now I know you and others are interested in how this progresses I will certainly do my best to keep you updated.

Hi Lyn, yes it’s definitely 0.05.

Hi all

Update regarding my Dad as some of you have expressed an interest and have asked to know what happens.

Dad has been to see the oncologist earlier today. I wasn't there myself but I've just got off the phone to my Dad and they have advised him the following:

• PSA levels have now risen to 0.06. This is an increase of 300% over a 12 month period.
• The level 0.06 is of course not an issue itself as it’s still low, but the rate of the increase is the concern.
• Hormone therapy doesn’t need to be considered at the moment.
• A further blood test will be done in 3 months time to check and monitor the rate of the increase in PSA levels. He will then have a phone consultation once he's got these results.
• The oncologist won’t see Dad again until his levels are at 1.0.
• The MRI scan was ‘clear’, ie it only showed some scar tissue around the prostate, it didn’t show anything else (we didn’t think it would anyway due to the low PSA levels).
• The oncologist has stated there is something there somewhere, we just don’t know where and as a result of not being able to see it they cannot cure it.
• The oncologist advised there is a possibility the cancer has spread to the bones / lymph nodes but they can’t be certain because they can’t see anything.
• Dad can pay for a scan (think it costs up to £4000 and is only available at 2 hospitals) to try and find out exactly where it is, but this new scan is still in an experimental phase at the moment and therefore they don't know how effective it is / isn't.

It seems as though we are simply waiting / monitoring results again as we have been for quite some time. The only real concerning thing for my Dad is that the oncologist herself mentioned she thinks there's a possibility it has spread.

Not really a huge update to give but that's where we are with it.

Seems crazy that a medic would give such dire forecasts with a PSA that has only gone from 0.02 to 0.06 ... thousands of men all over the country would be having further treatment if that was a significant number!

Edited by member 30 Aug 2019 at 21:24  | Reason: Not specified

Thanks Bri, fingers crossed!

Hi Barry

The information above is really helpful, thank you. Without you all on here I’m reliant on listening to only my Dad and / or using Google!

I’m afraid I couldn’t tell you what the name of the scan is that was discussed, although I think he said the two places he was advised it was available was Northampton and London. Not certain though. Sorry I can’t be of more help at the moment (I shall try to find out more when I next see him).

I’ll try to find out a bit more when I next see my Dad, Lyn. As it stands I really don’t know what the name of the supposed scan is.