Worried about my options

Thanks for your reply, it really is much appreciated.

Personally I'd happily stay on AS for ever if I knew my PCa wouldn't grow, but the fact there's a 4 in my G score, suggests it is and will continue to grow.

I'm so worried about the side effects of the treatment options. 

Is there a recovery from the side effects etc? Is the ED/incontinence permanent?

Thanks 

Lee

Hello Lee,

I would advise getting a second opinion - even if its just to put your mind at rest.  I presented with similar scores (PSA 4.6, G7 3+4, T1) and AS was not an option.  Following radical surgery, on examination, the scores were adjusted upwards to G7 4+3 with a tertiary 5, T2c. 

Flexi

ps - Lynn is right - these were my circumstances

Edited by member 30 Apr 2020 at 14:43  | Reason: Clarification

A 3 doesn't turn into a 4 and then a 5 over time - generally speaking, a man who was diagnosed with a G3+4 doesn't have a G5+5 by the time he dies. Hence, Flexi's cancer didn't advance between diagnosis and surgery; it was just that once they got in there it turned out that the biopsies had underestimated the situation. My husband was diagnosed with a T1 (early stage, can't be felt on a DRE and can't be seen on a scan) but when they operated, they found that it was a T3 and already spreading to his bladder.

You ask why AS wasn't an option for Flexi. In the normal COVID free world, AS is usually only suitable to men with a T1 / T2a, G6 (or sometimes a G7 (3+4) if there are only a couple of cores and they were a low % cancerous) and low PSA. As most of that doesn't apply to you, I am hoping for your sake that they are only suggesting AS for an initial period - to give you time to complete your family or freeze sperm, for example, or until hospitals are able to re-open operating theatres safely. A man diagnosed in his 30s or 40s will tend to have a more aggressive and more persistent cancer than a man diagnosed in his 60s or 70s so the general approach with a young man is to hit it hard and fast. Also, a T2c is not usually considered suitable for AS - that is more significant than having some element of 4 in your gleason score because the c indicates that it is on both sides of the prostate.

The N0 means that you don't have any evidence of spread to distant lymph nodes. Once you have had a bone scan, your diagnosis will also have an M0 or M1 as well. At the minute, it seems your diagnosis is T2C G7(3+4) N0Mx

Thanks Chris, that's reassuring. 

Just can't understand why the urologist would have suggested AS if it clearly isn't a good idea. 

Will speak to her soon and get some answers. 

Hi Barry, 

Thank you for your reply. 

I'm not on AS because I don't want to go into hospital due to covid, I was advised by my urologist that that is the best option for me. She said at this stage it's not aggressive and may never develop so would be unnecessary to have surgery. 

Is it correct that it could go on for 20/30/40+ years without being an issue?

That's good to hear, maybe worth having a look online for a decent surgeon and go from there. 

Thanks again all. 

Sorry, I don't quite follow this.  As I understand it from your original post you were offered AS and were happy with that except you were concerned that this might have been suggested because radical treatment would have involved a greater risk of contacting the C -19 virus.  (From what has been said about segregating the virus patients this risk had been greatly reduced if not 100% guaranteed.)  But you now say you don't wish to be on AS because you don't want to go into hospital to avoid covid.  You wouldn't have to go to the hospital for AS at least if/until your PSA caused such concern that a further scan was done with the possibility of imminent radical treatment and this could be many months away.  You could just get PSA tests done at your GP's surgery at 3, 4 or 6 months as considered appropriate and these results sent to the hospital.  Similarly, if you were prescribed HT, the injections could also be given at your local surgery so no need to attend Hospital for most likely a few months.

Certainly, it's possible that your cancer might not spread for 30 or 40+ years but this is something that cannot be determined at this stage.  PCa can be sort of dormant for many years and then take off.  You are a young man to carry this risk for a long time and being diagnosed young PCa is often more aggressive.  Doing nothing risks the cancer progressing without knowing it and possibly the best opportunity of curative treatment being lost. 

I suggested the possibility of a second opinion to see whether your present consultants view that AS was a good course for you at the stage was supported.  I can tell you from personal experience different hospitals (even the best ones) can interpret scans differently.  You might not even need to attend for such an opinion if histology and scans and test results are made available for this.  You could then further consider how you wish to proceed.

Barry

"I'm not on AS because I don't want to go into hospital due to covid,"

Think you have misunderstood what Jackfan is saying.  

Thanks Chris

But OP has already been recommended AS so doesn't have to go back to hospital until  PSA tests carried out at local surgery dictate this is necessary as stated in my post. Even then he has the option to defer if he wishes.

Edited by member 01 May 2020 at 13:05  | Reason: Not specified

Thanks lyn

Hi Jackfan

This is my first post I've just been diagnosed 2weeks ago 3+4, I'm 56 and due to have my first contact with a surgeon on Monday, my consultant has told me the panel have advised 50/50 surgery/AS, I haven't really got my head around the score meanings yet but like your comment my big fear is incontinence and ED in the case of surgery, you mention choosing a good surgeon how far and wide did you look to achieve this or were you just choosing the best from the hospital you attended?

let me know thanks in advance

Ian

Hi again Jackfan

Thanks for the private message I will heed your advice, apparently I have to be a member for a little longer to reply privately. I have just noticed it was MikeW who chose the surgeon, like you though I would love to think the AS option was a sensible one in the short term (a little longer to enjoy normality) but I am worried the tiger/pussy cat scenario if the former could increase the chances of more nerve removal if I wait, I assume thats your worry as well is it?

Hi Lee,

Please see my profile, apologies I'm not the best with grammar etc

It includes me , RP da Vinci 2015 and my brother who chose RT.

Feel free to ask anything.

Bottom line for you is, stay informed, and ensure the best outcome for complete remission.

Sounds simple eh !

I meet my surgeon about c.2 hrs before he removed my prostate. Ie 5 minute chat .  A bit of a surprise.

5 yrs on.  PSA 0.02  I was dry after 48 hrs. Ie  Catheter was out in 7 days .  Just used a folded tissue as had a very slight leak if got up quickly, very awkward getting up from sitting position for about a week.  ED. I had non nerve sparing, I was told by the original consultant nerves would be spared.    However thanks to this forum ,  esp.  Chris informative down to earth posts,   me and wife persevered and in first 12 months tried most solutions, other than injections.  

Took over 3 yrs before no pump, rings or meds needed.  5 years still improving.    Obviously no ejaculation and no spontaneous erections  when required.   Far better outcome than I could have expected. I'm 2 years older than when I lost my dad to PCa so puts things in perspective.

There are a number of options for you in my opinion.  RT or AS would not be on the top of my list at age 41.

I may have missed it , apologies.  How many prior PSA tests, values and dates  and why being tested  ?  

When is your next PSA test booked ?

Hope this helps.

Gordon

Hi Jackfan

I was PSA 5.6 then 5.9. Biopsy showed 3+4 and I was offered AS, RT or RALP. The MdT suggested that RALP would have the best outcome. I was 60 at the time and fit, healthy and have been sexually active all my life.

I had the RALP in May 2019 which confirmed 3+4. I am now on the quarterly PSA tracker and have had 4 consistent "Undetectable"Results. Continence: I am still using a Pad a day/night but this is pretty much for safety rather than continual leakage. I am a heavy alcohol user. I am also pretty physical all day.

ED. I am still sexually active albeit different with dry orgasms. I have a pump and have used Tad & Silden in varying degrees. This produces "Improvement " but by no means Erections like before, only 80%. Desire & Bloods all positive but I guess I still have problems with the nerve impulses. I had 50% sparing. This is obviously frustrating and depressing sometimes but one must stay focussed on the matter in hand & I for one have been on it every day !!!! I shall not be giving up any time soon.

So to sum up re side-effects: The greatest side effect is hopefully not having cancer any more.

Wishing you all the best on your journey.

Just had my 3rd blood test results, and psa has dropped to 5.3

Is this normal for it to drop?