New to it all

So sorry you have found yourself here.  Hope everything goes well for you both from now on.

Have you had any new scores from the tests done on the removed prostate yet and have they changed at all?  Hope all is clear and he is well on the way to recovery.

Take care of yourselves and each other,

Des

Hi Des,

Yes his PSA is undetectable after 7 months which is great news . Things are settling down now but it’s still takes a lot of getting used to emotionally and physically . This forum is so helpful in answering questions and knowing others share your anxieties. Thanks for your response .

Hello

May I have a question too?

How long your husband was waiting for op after his final diagnosis?

Best wishes 

Hi, I haven't been on this site for a while but just popped in and noticed your post.

After his surgery your husband shouod have got the rsuts of the tests of the remove gland.

This may have included an updated gleason score and may have indicated if there was "peri-neural invasion" or not.  This is useful to know as if it is present there is a slightly higher chance of the tumour escaping from the gland.

More importanlty, he should have been told if there were "positive margins or not.  Positive margins means that cancer cells have spread beyond the edge of the removed gland and obviously this means a higher risk of recurrence.

PSA being currently undetectable is great.  As long as it remains undetectable, even better.  However if it should re-appear, there is no need to panic.  If it reappears at a low level, what is important to consider after that is if it rises on three consecutive occasions and how much it rises.  If it goes uo and down and or rises no more than 0.05ng/mL per year, this is almost as good as undetectable.

A "biochemical recurrence" is connidered to have occurred if and when it reaches 0.2ng/mL

Hopefully your husband has now recovered continence and if is important for you, his erectile function.

If erectile function is important and he hasn't yet recovered this hopefully he ha d a "nerve sparing" opoeration and should have started erectile rehabilitation as soon as the catheter was removed.  I'm afraid if he didn't have nerve sparing, chances of recovery are poor.

The longer the time that is left before starting rehab, the poorer the chances.  It can take up to 2 years.

Prostate Cancer UK have some very good information about this.

Great news that his psa is undetectable.  I’m similar age and also similar Gleason score. Post surgery I was uplifted to 3 +4 however they couldn’t determine margins due to therma??

erectile function recovering  year later (with viagra),  delayed due to course of chemo psa never dropped to undetectable post surgery.

Hello,am a bit late coming back but due to the urgency had to make a fast decision.

After examining all options especially focal therapy I decided to do radical prostatectomy (open).

I had the operation on 14 th February,Gleason 9 and last PSA was around 14.(no bone infection no metastasis)

The operation was done with frozen section biopsy during the operation allowing the surgeon to cut very close and also do nerve sparing on one side.

The catheter was removed after 7 days and I was released after ten days but with one wound drainage bag that was still secreting (the other had stopped after 3 days)

The bag was finally removed yesterday and it is a big relief.

Despite Gleason 9 and slight capsular penetration the result in the biopsy was such that it is considered G3 but R0 so no remaining tumour discernible.

Lymph nodes were clean.

Continence  is not perfect but working on it (I am 69 so thats expected) but can travel an hour without any real mishaps.

I can sleep too without leaking and its improving as the pain subsides.

The operation is very heavy and one and I recommend those considering it to watch Christopher Edens video as it is more than truthful.

One still lives with the risk of recurrence even with tumour removal but we will check PSA 3 months after operation.

I am not happy with some advice to also have radiotherapy to kill off latent cancer cells in a few months.

I will be reporting on that and would love to hear from people who had successful ops and then had an elevated PSA after.

. Good luck with your recovery. Being open you are still early in the recovery process. My psa was recurrent, I Was fortunate enough to receive a pet psma scan which showed cancer in ribs and none in prostrate bed, therefore radiotherapy to the bed would not have had any effect.  I was first in my hospital to have that scan and it’s not available everywhere.

we can only ask questions and place our health in the hands of the professionals.

Hello Paul 

Apologies for the delay in replying , I haven’t been in here for a long while . We were offered surgery in June after the diagnosis in April but as we wanted the consultant himself to do the surgery , it was done in July as he was having some holiday . It worked out better for us as my son had GCSEs.

Thanks for this . He has had 2 undetectable results now . His surgery was nerve sparing . He has tried a pump with mixed results so had asked  to try injections . I am thinking seeing a psychosexual therapist may be of help , has anyone tried it ?