Update on my prostatectomy

Rod the Mod 26 days ago

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174 subscribers
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Hello out there,

It has now been over 2 months since my robotic assisted radical prostatectomy.

My follow up date with my consultant is on March 18th with a blood test the week before.

I have gone through a lot of emotions since then including pain and depression.

Once l got to the end of January my wife said "thank god that month is over"

Unfortunately my mother suffered a heart attack and sadly passed away on the 3rd of February :-(

I saw my mum everyday, she had 4 carers look after her and was the grand age of 94.

I couldn`t see mum for over 3 weeks and had to tell her l had, had a hernia operation

as l didn`t want her to worry if l mentioned the word cancer.

This turn of events has weirdly helped me to focus on something other than myself.

I have thrown myself in to sorting out mums bills, house and funeral arrangements.

And believe you me there is a mountain of paperwork to get through.

I feel like i`m still looking after mum which is comforting.

I have had appointments back at the hospital but they soon realised it was too soon after my operation to be of any use.

They have re-scheduled in another 2 months time.

I did speak to a Urology Nurse about my incontinence which is getting me down.

The best pads are Tena level 3 but i`m getting through a pack of 9 a day which is costing £180 - £200 a month !!

The Urology Nurse was very helpful and is going to send me some pads to help out and hopefully half the load.

I still suffer with some soreness so am still using Cavilon and Savalon to ease any pain.

I am doing as much as l can exercise wise and making good albeit slow progress.

I do gardening for the elderly so it is my aim to start gardening again once the better weather is here to give me a goal to aim for.

UPDATE:

I went to see my consultant on March 18th.

He said my operation went well but was sorry to hear about my journey since.

He said he was hoping my PSA level would be 0 to 0.04 but it was 0.09 and he was concerned.

He sent me for another PSA test and that came back as 0.10

He said he was hoping to see me in 6 months but said it would now be 3 months, l left quite worried.

So l went for my PSA test (31/5/25) probably my most important to date.

I received a letter yesterday stating my PSA level was 0.10 ug/L

The Urology department said they were happy that it had stabilised so do another test in 3 months.

This was a massive relief although l don`t fully understand why the reading is that figure or what it represents ?

I am 10 stone 7 lbs and will be 67 in September, l have always remained fit and active, the past 6 years i`ve been gardening for the elderly.

However l don`t know if anyone can help or advise as the past month l have felt really lethargic and not much energy.at all.

My incontinence is getting better but still gets me down.

I was thinking of seeing my doctor to go to the Well Man Clinic for some help.

l really don`t feel myself and my energy levels are poor, all very frustrating.

Any advice welcome :-)

Millibob 25 days ago

Hello Rod (Rod the Mod)

Thank you for the update - I am so sorry to read all is not well and of the loss of your mother.

My first thoughts are do you have a "Maggie's" near you - this is a cancer charity where you can drop in, have a brew and talk things through - link here - Maggie's. Have you thought about joining any of the "men's" clubs such as Men's Sheds - this will take your mind off your recovery.

There's also our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) - give them a call - they can help.

As for your PSA - after surgery they are really looking for 0.01 or below - it might be an idea to ask your consultant for details of the histology report on your removed prostate and check it's been removed with "clear margins".

I hope the above helps and wish you a speedy recovery - do let me know if I can do anything else for you.

Kind Regards - Brian.

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Rod the Mod 25 days ago in reply to Millibob

Thank you so much for your advice very much appreciated

Al985 25 days ago in reply to Millibob

Hi Millibob. Sorry to say it is me again. I just can't get my head straight. I may have a actually asked this before but I'm in a mess so bear with me. I have tagged onto this post as you mention clear margins. When I went for my one and only post op check. Throne thing I focused on was the PSA which was undetectable le. Because of my elation when in discussing the histology I missed the positive margins. Well no. I thought it was a good thing. It was only seeing them discussed oh here did I realise the surgeon had pulled a fast one. I recently saw my letter to the clinic where the surgeon said " Thankfully the PSA wS undetectable" suggesting to me he expected differently. Am I living with a ticking bomb? Can you give a list of questions I should ask as I feel he is treating me like a child.

Millibob 25 days ago in reply to Al985

Hello Al (Al985)

Don't forget I am not medically qualified so this is my simple explanation of surgery.

The remove the prostate by robot leaving a few small holes that heal in time.

The prostate is then put in a lab dish and sent to the lab for closer examination. They remove the whole of the prostate and the seminal vesicles and depending on the surgeon sometimes lymph nodes and part or all of the prostate bed.

The lab examines the dead cells in the dish and providing there are none round the edges of the surgery - it looks good and the cells haven't had chance to go "walkabout" in your body - hence the term "Clear Margins".

If you don't have a prostate then a PSA of 0.01 or below is expected.

I would simply ask the consultant "does the histology report on my prostate show clear margins all around" - yes or no for an answer.

I hope this helps.

Best wishes - Brian.

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Al985 25 days ago in reply to Millibob

He said there were positive margins. In practical terms what does this mean. Should I have further tests/investigations or even treatment. I chose surgery as I thought that would be it but from what I have read about positive margins I am dar from being cured.

Sorry if I sound negative when others are in a much worse position than me but I feel the surgeon isn't helping. He wants to ring me and then discharge me to the nurses.

Alwayshope 25 days ago in reply to Al985

I think you need some more information from your surgeon as to size and distribution of the positive margins e.g.

A 3mm positive surgical margin (PSM) after a radical prostatectomy (RP) indicates that cancer cells were found within 3mm of the surgical incision line. While a PSM can increase the risk of biochemical recurrence (BCR), the presence of a 3mm PSM, particularly when isolated and apical, may not be as concerning as longer or multifocal PSMs.

Here's a more detailed explanation:

What is a PSM?

A PSM means that microscopic cancer cells were detected in the tissue surrounding the prostate after surgery.
Why is it important?

PSMs suggest that the cancer may not have been completely removed during surgery, increasing the risk of recurrence.
Impact of PSM Length:

Longer PSMs (greater than 3mm) have been shown to be associated with a higher risk of BCR. Conversely, a 3mm PSM may not be as significant.
Other factors influencing risk:

Multifocal PSMs (multiple areas of cancer cells at the margin), a higher Gleason score at the margin, and extracapsular extension (cancer cells breaking through the prostate capsule) also increase the risk of BCR.
Management of PSMs:

Depending on the size and other characteristics of the PSM, additional treatments like watchful waiting, salvage radiation therapy, or additional surgery may be recommended.
Communication with healthcare team:

It's crucial to have a detailed discussion with your urologist and oncologist about the PSM, your specific risk factors, and the best course of action for your situation.

A biochemical recurrence is usually defined as a PSA above 0.2 after a Prostatectomy. Whether you will be put forward for adjuvant radiotherapy will be determined by the histology from the prostate or whether you will be kept on Active Surveillance until the PSA reaches 0.2 at which point you would normally be offered salvage radiotherapy is a conversation you need to have with your oncologist. There is some evidence that waiting for the PSA to rise above 0.2 might be beneficial in order not to over treat and it also lends towards fewer side effects.

Millibob 24 days ago in reply to Al985

Hello Al (Al985)

I am on holiday in Turkey at the moment so my replies are slower than normal, however Alwayshope has given a much better answer than I would so it's back to my 2 boiled eggs for breakfast.

Thanks AH.

Best wishes - Brian.

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Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Strength, Courage, Faith, Hope, Defiance, VICTORY.

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Rod the Mod 24 days ago in reply to Rod the Mod

Hi, I just thought l would let the people out there that l rang the support line.

I was on the phone for a good 45 minutes speaking to a lovely understanding Lady who had the time to listen.

She gave me help, support and advice and l felt better for it.

So if you are thinking of ringing one of these support lines then do so !!

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