6 monthly or yearly

User

Posted 07 Aug 2015 at 17:11

It's approaching 6 months since my last PSA test. But they told me not till get tested again till March (a year since my last).

Briefly my history is this.

Dx Nov 12 with a PSA around 22.

RP Feb 13

March 13 - Post op PSA 0.06 with histology saying full nerve sparing but small focal breech. G3+4

July 13 - PSA 0.087

Aug/Sept 13 - Radiotherapy

March 14- PSA 0.048

SEPT 14 - PSA 0.037

March 15 - PSA 0.028

Told to return for a PSA text in March 16 and to have a standard test rather than the sensitive one.

This feels a little too extreme although I'd like to avoid an unnecessary squeeky bum time. Not sure it fits in with NICE guidelines either as my last test was only 18 months since treatment.

So do I sneak in a 6 monther or just get on with my life. Been a crap summer with the atrocity we witnessed in Tunisia but determined to make it a good autumn/ winter

Bri

User

Posted 07 Aug 2015 at 19:16

Bri

it is great to see you posting. I know the Tunisia atrocity was a really traumatic time for you and Mrs Bri, only time itsef will ease that one.

I guess once a few people in a similar position to you comment on the frequency of testing and the sensitivity of the test you will be able to make a considered decision. However it does seem a little soon to be going to 12 monthly. I thought the normal was 6 monthly on the less sensitive test?

Your results have been so good to date maybe your team think that the longer interval is more suited to you.

Hope to see you soon
xx
Mo

User

Posted 07 Aug 2015 at 19:30

Hi Bri,

Is it fair to say that you will be worried if you have the test and worried if you don't? It sort of leads to that from your previous communist on testing and waiting for results.

If you will fret nonetheless, why not have the test, and then you will get the reassurance of a low or insignificant reading?

As I understand the pst op PSA testing regime, it is generally 3 monthly in the first 12 months post op, 6 monthly in the second year post op and annually thereafter. My new GP is doing me 3 monthly to get his own set of figures, which I am happy with. I don't do SBT any longer. It will be what it will be, nothing I can do about it. So no point worrying, acceptance of the inevitability of that fact makes for me a calmer life.

Have a good weekend.

dave

edit to add about normal testing etc.

Edited by member 07 Aug 2015 at 19:46 | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 07 Aug 2015 at 19:40

It does seem rather inconsistent Mo when I read the profiles of others on here.

In a way I'd rather avoid the SBT...I can also understand why she said have the standard test. They ain't going to do anything if there are increases below 0.1 so why put us through the angst of watching minute fluctuations. I think of Lyns OH who has has some wobbles due to this but his PSA is fine and if he'd had a standard test they would have been blissfully unaware of the slight fluctuations.

Thanks for the reply. Will shelve it and give it some thought next month

Bri x

User

Posted 07 Aug 2015 at 19:42

Cheers Dave

Will decide what I'm gonna do next month

Bri

User

Posted 07 Aug 2015 at 19:46

Hi Bri,

Your history is different to mine...... ie. To date I've not needed any RT

As of today my PSA tests are scheduled for every 6 months instead of 4 months.

Reading your history it looks like your PSA levels are continuing to drop after your RT.

Not sure, but I understand that it can take a couple of years for the RT to do it's stuff?
So why worry about an interim PSA test / reading before you need to...
Just my thoughts...
Best wishes
Luther

User

Posted 07 Aug 2015 at 20:39

Guys this is so depressing ! It's not about any individual I know. It's a forum for open debate and discussion between ' friends ' suffering from the same horrendous disease. Some of you have read my story , some not. This takes over your life. My GP today advised me not to look at this website again as he feels it is doing me more harm than good. It's not ' you '. It's my mental state ! Everyone fretting about about a 0.01 rise in psa post RP from undetectable when mine has come back as 1.5 after only 7 weeks post op. I'm sat here thinking I'm doomed for sure , when people like Indigo and Cookiegirl have real concerns ! I'm really sorry and apologise

Sorry Brian for ranting on your post

Edited by member 07 Aug 2015 at 20:41 | Reason: Not specified

User

Posted 07 Aug 2015 at 20:56

Chris I'm sorry to hear your results are not as expected. But hopefully your medical team will be onto it.

It is as you say a forum for all those effected by PCA. I'm sorry my post has upset you and I know you are not being personal. I stand by the fact it was a valid post and not about fretting. I was turning to others about the frequency of PSA testing nothing else nothing less.

Only you will know what you get from the forum. But aa you've learned already it can be a great source of support.

Have your medics discussed next steps with you

Bri

Edited by member 07 Aug 2015 at 21:01 | Reason: Not specified

User

Posted 07 Aug 2015 at 21:02

Yes you're right. I apologise Brian ( again ).. I'm just jealous. If my psa was 0.05 or something I'd ask them to leave it a year to be honest.

I've used the wrong words like 'fretting '. That's inflammatory and I didn't at all mean it to be
Chris

Edited by member 07 Aug 2015 at 21:06 | Reason: Not specified

User

Posted 07 Aug 2015 at 21:09

I'm not after an apology Chris and you've no need to

What else have they said in the histology report? Have they discussed what happens next with you. There are others who have been in a similar situation who I'm sure can advise

Try and take heart

Bri

User

Posted 07 Aug 2015 at 21:14

Histology Wednesday. I'm being negative again! Best I zip it before I get a Daving . Brian it is such good news last March and I'm so pleased for you

User

Posted 07 Aug 2015 at 21:23

Chris, it would be better for your peace of mind to find the threads of other members that have had similar results to you immediately after surgery rather than looking at the conversation of someone in a very different situation.

Some people get undetectable and it stays undetectable.

Some get undetectable and then it rises slowly until they need salvage treatment. Some get a not great pathology and go for adjuvant treatment straight away. For both of these groups, there can be huge anxiety about tiny numbers after the additional treatment as there are no other curative treatments to pin hopes on.

Some people never get the undetectable PSA that they had wished for when they chose surgery. It just means that additional RT/HT will be needed to mop it up. Your post-op result isn't the best ever in history but should be no surprise to you as you already knew you were T3 with some concern about whether it was still fully contained. The good news is that your medical team will have a good idea where the rogue cells might be. 18 months from now you will be stressing about whether you might get a 0.01 rise and whether to go 6 or 12 months between tests.

Edited by member 07 Aug 2015 at 21:27 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 07 Aug 2015 at 21:30

Thanks Lyn
Ive apologised to Brian well meant . You know I wont be stressing about any small rises whatsoever . I actually wont want to know

Edited by member 07 Aug 2015 at 21:35 | Reason: Not specified

User

Posted 08 Aug 2015 at 01:05

Chris,please listen to me and hear properly what I have to say...
you know I am with you 100% but you must look at this conversation and see that it is not your situation at this point in your journey. Bri is over 2 years since his surgery not 6 weeks. Lyn and others are all saying the same things to you that I have in our messages. This is not a disease that you can have treated and wake up the next day 100% normal. The PSA result you have had is not perfect at all but it is not horrific either. I know you dread having to have any other treatment at all but please try and rein in your fear because adjuvant treatment may be essential but it will give you LIFE and in the majority of cases a chance of remission and a normal PCa at bay life one at that. No less a man and no less a Dad and Husband.

Everyone here is trying to be supportive of you, Dave is too, you may worry that he tells it as it is but he does that for everyone not just you!

You really should post on you own conversation more often so that the messages do not get mixed up. We all want to hear you and try our best to be supportive of you. Sometimes if you post your own worries or concerns on someone elses conversation we might miss that.
Stay strong and try to focus on the here and now not what might happen next week, month or beyond.
Big hug (with a large glass of wine)

xx
Mo

Edited by member 08 Aug 2015 at 09:38 | Reason: Not specified

User

Posted 08 Aug 2015 at 14:41

Bri,

I'll probably be asked (told) the same thing at my hospital check up in September (2 1/2 years post op.).

I'm a little uneasy too with 12 months so will try and convince them otherwise, perhaps 6 monthly for another year.

Flexi

User

Posted 08 Aug 2015 at 15:03

See how you feel Brian, whatever eases your worries go for it.

User

Posted 08 Aug 2015 at 23:27

Hi Bri

I totally agree with Paul, go with what you are comfortable with, good to see its still on a downward trend. These ultra sensitive test have a lot to answer for.

Take Care

Roy

Notification

Join the online community now.