Anxiety

Hello from me too (another wife) and welcome

Unfortunately,  when your other half suffers from OCD there isn't much you can do to help him overcome his fears.  You can't force him to come on here can you.

So..... at the moment you have to look after yourself,  You have young children to take into consideration too so much as you love him, you have to get your priorities right.

As Chris says, perhaps you could approach your GP and get some help from him, either medicine or counselling.

As far as I can tell from your post, your husband is in the cure camp and he would likely have been eligible for AS or Brachytherapy, but of course he wants it out so he probably wouldn't consider anything other than RP.

Do what the others suggest as far as ringing the nurses on this site. It will help you by having a  medical person to talk to.

You could download The Toolkit from Publications as it is full of information that you both might find helpful, if you can get him to look at it that is.

I'm sorry that I can't be more helpful and hope that you've gained something from what we have all said and hopefully others will come along to add to your post

Best wishes

Sandra

Hello
Sounds like you've got your hands full - please use this site and phone the nurses. This site is so full of positive people, and I feel normal amongst them. The nurses are excellent too. Hope your husband comes to accept a better reality soon.

Good point Stuc. My dad had G7 and had surgery when he was 62 - we are busy planning his 80th birthday party :-)

The thing is, wife, that your OH will probably still be here in 15 or 20 years but once diagnosed that fear of it coming back and the constant blood tests for the rest of his life never goes away. You might need professional help to support him through it, it is a huge task.

Some very good points. Thank you for all the tips.
I have been doing a lot of reading around the subject and also chatted with the nurses on here so feel ok about treatment options, side effects etc.
Post op we are in a good position as I have a very supportive boss and I'm able to work from home so can provide the support needed. Although having had two c-sections and just having to get on with it I'm unlikely to be very sympathetic to him moping around.😉
I wish we could just get the date fixed though they seem to be fannying around quite a bit with one person saying it's scheduled and then another saying it's not grrr. Each time it plants another seed of doubt that something is going wrong. I have a feeling it's something to do with it being a private procedure vying for time in the NHS facilities which is really frustrating because if we weren't going private the NHS would have to find time to do the OP during normal hours anyway instead of being paid to use their resources when they would otherwise be sat idle. I.e. at the weekend.
Otherwise a better day today after he got the all clear on the MRI on his spine which confirmed he doesn't have bone cancer in his spine, just a bad back like the rest of us.

When does the fear subside?
OK so as those who've read my posts will know my OH suffers from severe health anxiety and getting a positive PCa diagnosis was our worst nightmare, not only did we now have cancer to deal with but it just reinforced in his mind that he had been right all along and that all of his worrying had been justified.
He had his RARP on 11th Feb and his post op PSA was 0.01, surgeon very happy with results and not planning on seeing him again.

So my question is this. What is a normal level of ongoing anxiety?

Clearly it is not where he is at, which is chasing every ache and pain convinced it is prostate cancer that has spread or another undetected cancer. Each time demanding a referral to see one consultant or another, scans, tests, etc, etc. I live in a world of eternal optimism where nothing bad is happening until it comes crashing through the front door, i.e. at the point of diagnosis, and even then it can be treated / cured until it obviously can't. I just wonder if I'm being too harsh on him expecting him to return to some form of normality so soon. Does it normally take weeks or months to sink in?

We saw his GP on Friday who basically told him he had to get treatment for his anxiety otherwise he would never work again and could end up losing everything. Harsh words but I still don't think he was hearing it. Anyway we have a referral to the psych team on its way. I just hope BUPA are true to their word and will continue to support him through this too. I hope that I can support him too.

Oh wife, I am sorry to say that even without a mental health issue, for some men that anxiety will stay for the rest of their life as it does for some women after breast cancer treatment. You will find men on here 5 or 10 or more years down the line who will still be terrified if they feel a new ache or pain, will still imagine that the cancer is spreading unchecked around their body and no-one has noticed, or who just feel an enormous anxiety as it comes up to each PSA testing time.

It may be that your OH would have felt this way regardless of his history.

I am shocked for you that there are no plans to see the surgeon again - a regular meeting with the specialist can be very reassuring. Who is going to monitor his PSA, recovery from surgery, any emerging side effects etc?

I think you are under the same Mr P as most of my family and if you have read any of my old stuff you will know that in my opinion he is the best thing since sliced bread but can tend towards a tad over optimistic :-/ With a positive margin the likelihood of recurrence is higher (though not as high as with PNI) so important to monitor PSA closely

No, no-one explained about shoulder pain post op. He was too stressed out about other things I think. The shoulder pain precedes the op so I think probably another cause although it could of course have been made worse by the procedure. Thanks for the heads up.
Julie

Update.
PSA has been measured a further 3 times since last post with readings of
0.004, yay still going down
0.005, OMG it's going up, panic
<0.003, happy days or at least it should be but instead this result is obviously wrong and really it is still rising.
So on the cancer front all is good and it is looking very promising that the cancer has had it's butt kicked out of the park.
On the anxiety front we have had several steps forward and several steps back again. We will keep battling this one.
All the best everyone.
Julie

The variation is so minute that blood could be taken for PSA test 3 times in any one day and give these results. Some hospitals have dropped testing to a further decimal place because results are unreliable and only cause unnecessary concern to patients who think such small differences are significant.

Unlike Bolinge and Lynn I am a fan supersensitive but you have to accept it is just that "supersensitive! "

Your husband had a confirmed 3+4 and now has an incredibly low PSA all good news to be celebrated!  Even that small positive margin was probably killed by the trauma of the op and the very liw PSA supports that.

If it gets above 0.03 then he should take notice.  My own PSA "jumped" to 0.014 6 months after a less than 0.008. It peaked at 0.03 (I hope!) and is currently back down to 0.023. All the urologists and oncologists I have seen (because I stress too!!) have told me the same thing - stop worrying ,  start living but keep testing! !  I gave moved to annual though because PSA roulette is not fun!

The difference is you still have a prostate which will produce PSA so your comparison is completely invalid.

After prostatectomy we shouldn’t have a PSA reading, a PSA of 0.2 and rising for a post prostatectomy man is defined as biochemical recurrence. Hence all the very real angst. My PSA rose to 0.3 about a year after prostatectomy and rose quickly to 0.7 and was doubling in 1.2 months. I have since had salvage radiotherapy and am still on hormone therapy.

Men having had radiotherapy (usually combined with HT) also understandably have PSA angst. The definition of biochemical recurrence in men having had radiotherapy is 2 above the nadir. 

See below from a study on this.

Defining BCR

The definition of BCR differs depending on whether men have undergone RP or have received primary curative RT. After RP, PSA typically falls to an undetectable level, and BCR is defined as 2 consecutive PSA values higher than 0.2 ng/mL and rising [19]. After RT, PSA levels do not typically fall to zero, and BCR is defined as any PSA increase greater than or equal to 2 ng/mL higher than the PSA nadir [20]. The risk of PCa-specific mortality differs depending on whether the PSA recurrence was after RP or primary RT, and it is therefore important to interpret BCR endpoints in the context of the initial treatment [1].

Edited by moderator 12 Jul 2023 at 09:27  | Reason: Correcting Typo/autocorrect

Just as a matter of clarification, I rather think that Ido4 made a typo in his last post when he said "Men having radiotherapy (usually combined with RT)....." meant combined wit HT.

(This post was written thinking the reading was 0.11 when it's 0.011 which is still very low. It's not deleted because people have replied)

It seems quite a jump. I'd want an immediate retest.  Did they not suggest it.

I'd also be interested in whether the same analyser is being used.  Although I've never been convinced doctors know or care much about how the machines work.  Probably it doesn't make a big enough difference to them. Although it might to you.

Hospital,  GP or private, sometimes Macmillan can authorise tests. But better to use the same assay.

Edited by member 26 Jul 2019 at 08:39  | Reason: Not specified

It's the extra sensetive PSA test Petersplaice if he had had your essay it would simply have been <0.06 ie no change.