Worried about rising PSA levels

User

Posted 20 Jul 2015 at 17:52

Hello all, I'm hoping to find some advice/reassurance on behalf of my dad.

He was diagnosed with PC and opted for radiotherapy treatment, after this his PSA level dropped to around 0.17 (I think). Gradually, at each 6 monthly PSA test, his levels are rising. He is sometimes asked to have a repeat test after 3 months instead of 6. In September 2014, the level was 3.1 and he was retested in December, when the level was 3.8. At that time, he was told it was satisfactory and he should be tested again in 6 months time. His results have come back today at 4.7.

In December, I had contacted Macmillan for advice, mainly due to my dad not being particularly proactive (he's 75) and to get some reassurance. They told me that his consultant would be looking out for his PSA reading to double from test to test which would signal treatment was needed (I'm hoping this was the correct advice). They also told me further radiotherapy would not be an option but that if further treatment was necessary, hormone therapy was an excellent option.

I'm realistic in that the readings are gradually increasing, but I would like some clarity on when we would be looking at further treatment or if it is likely that the rate his PSA levels are increasing will mean that they are monitored rather than action being taken.

Sorry for the long post, this is new to me and I'm finding it increasingly stressful each time the test comes round, then a repeat test being needed. I'm trying to be optimistic for my parents but I'm becoming very concerned.

Many thanks

User

Posted 20 Jul 2015 at 19:39

I should also say that he was diagnosed and treated in 2010, so his PSA has gone from .0 something (following treatment) to 4.7 today.

Thanks

User

Posted 20 Jul 2015 at 21:36

Hello Kirsty and welcome.

Unfortunately I cannot answer your question regarding doubling times but I do know there are people on here that can help you if you just hang in there.

Be patient, somebody will be along to answer you I'm sure

We can't control the winds - but we can adjust our sails

User

Posted 20 Jul 2015 at 21:47

Hi y

Consultants vary on what PSA level rises to, be that by doubling between tests or gradual increases, before they step in with HT (Hormone Therapy). Some feel stepping in early gives no more time before other drugs than delaying it. Bearing in mind HT is time limited to roughly a couple of years to many more. I would enquire at what PSA level they will commence HT so at least you know.

Remember some of that PSA could well be from healthy cells recovering. My own we talk about it level is 2.

Ray

Edited by member 20 Jul 2015 at 21:50 | Reason: Not specified

User

Posted 21 Jul 2015 at 00:36

Hi Kirsty,

I think Ray is correct that Consultants have different ideas on when to intervene and in some cases treatment is being tailored to individuals rather than complying with a standard approach. If my case is anything to go by, sometimes it is possible to persuade consultant's to be more proactive. I will explain:-

I had Radiotherapy in 2008 and it was only about three years later that my PSA slowly began to rise and has done so at every PSA test since. I asked the Marsden at what stage I would be put back on HT (which I had not had since RT in 2008). Initially, I was told that further treatment would not be considered until my PSA reached my nadir + 2, ie at 2.05. When I subsequently asked again at another consultation, the Dr was more vague. I determined at my next consultation I would ask for an MRI scan and on this occasion the Consultant agreed to this as he felt there could be some cancer in the Prostate. An MRI showed this was indeed the case. It was agreed that I would be referred to UCLH where I had further scans and a template biopsy which confirmed cancer in the left side of my Prostate and suspicion of cancer in one Node. I am to have salvage HIFU on 28th July along with HT treatment as part of a Study. My PSA in May 2015 had only risen to 1.95.

If I had not asked, I doubt very much I would have been offered an MRI and the opportunity for early Salvage treatment, particularly with a relatively low if regularly increasing PSA. Some cancers of the Prostate do not show high PSA whereas others do. In my case it might have been assumed that with a low PSA this was due to healthy cells recovering and I wonder if other men in my position have had scans deferred for this reason, food for thought!

Edited by member 21 Jul 2015 at 00:37 | Reason: Not specified

Barry

User

Posted 21 Jul 2015 at 09:33

Thank you for your responses, I guess it's really hard to give a set answer because everybody's situation is different. Although I'm wondering how accurate Macmillans advice was, which seemed very reassuring at the time.

After a bit of a meltdown last night I'm feeling a bit more positive today. Although he hasn't seen his consultant for a good few years, I am confident that she will ask to see him when necessary, although I'm going to speak to dad about allowing me to call her after his next test, if it has gone up again. Just to get a better idea of likely future treatment (if any).

My grandfather also had PC and I can't remember him having any aggressive treatments but I believe he always had it - although he was 89 when he died, not from PC but with it.

Kirsty

User

Posted 21 Jul 2015 at 10:08

Would it be possible (or acceptable to your dad to) have you with him at the consultation? It's not unusual for PC patients to take somebody else into the interview as there is so much info to take in and sometimes it gets confusing for the patient to try and remember it all.
At the very least he could take a notebook, again not odd in any way and consultants are used to it. They understand the need to get things straight for the patient (well most of them do!)

We can't control the winds - but we can adjust our sails

User

Posted 21 Jul 2015 at 10:33

At this stage he doesn't have an appointment to see anybody. He got a letter yesterday telling him his result and confirming that his PSA has gone up, so they would like to re-test in October. I saw the letter and it says they don't need to see him at this time, just to book in with his GP practice nurse for his blood test in October.

This part seems really hard, seems like we're going through a constant cycle of blood tests, then re-tests after 3 months. Dad isn't really showing it but I think it's getting to him.

When he was seeing his actual consultant my mum went too but if we get to that stage again, I'll ask if I can go too.

Thanks

User

Posted 21 Jul 2015 at 12:01

Kirsty

Firstly apologies for missing part of your name in my first post. I was tempted to edit again but from a mobile that can be a bit adventurous :)

Frequency of testing: as my profile shows it was deemed I needed 3 monthly testing for awhile so I’m aware of the stress that can cause. However there are those who would prefer 3 monthly testing for the reassurance it gives. I prefer 6 monthly via my GP but take comfort from the fact 3 monthly testing shows they will step in if a need is seen.

Doubling in time comment: I would see that as no more or less than a generalisation; one reason is as Barry passed comment on you can have a type of PCa that gives off little PSA yet can be aggressive (deemed by Gleason score), again my profile shows I’m in that area.

Hormone Therapy: bear in mind it does come with side effects; fatigue, hot flushes and sexual function being typical with varying intensities. Perhaps one reason, particularly with advancing age, why the longer they can wait the better quality of life is.

Ray

Notification

Join the online community now.