Worried about my options

User

Posted 30 Apr 2020 at 09:51

I'm 41 and diagnosed just over a month ago.

I've been sent a little booklet that had quite a lot of information in it, but none which really helped with making a decision on treatment.

My urologist has advised active surveillance which I was happy about, but my G score is 7(3+4) T2c N0 and a psa of 6.8g/l,and after reading many comments on here, the general consensus is that men with a score of 7 are being offered radiotherapy etc and not having active surveillance as an option.

Am I just being paranoid, that I'm being fobbed off until after the pandemic has passed? Or is active surveillance still an option with a score of 7?

Thanks

guys and stay strong

Lee

User

Posted 01 May 2020 at 00:13

I was 41 when diagnosed, without symptoms. My PSA was 4.3, 2.9 and finally 7.3 all within around 6 months from the first test to the third.

I had an MRI which could not detect a cancer and although I was advised by the consultant that I was seeing at the time to wait for 3-months and have another PSA test, I elected for a biopsy.

All throughout the process I was told there was a very low chance that I had cancer and that all of the odds were stacked in my favour. A couple of days after my biopsy I was told that I had a Gleason score of 3+4 and that an operation was the only sensible course of treatment because of my age. The reason being it was highly treatable, my age provided an excellent chance of recovery and radiotherapy would highly likely cause a secondary cancer later in my life.

I was however encouraged to see a specialist in radiotherapy just to hear what he had to say. His advice was unequivocal, that there is only one sensible treatment for me and that it was the surgery. He said no consultant in the country would recommend anything else given my age and location of the cancer (which according to the scan looked contained within the prostate).

I met my surgeon a couple of weeks before my operation and had the procedure a couple of months ago. I had robotic surgery and it went well and although half of my nerves were lost (as a precaution) I feel great.

I have had no real issues with incontinence and as far as erections are concerned; I began to function one week after my catheter was removed.

I know that not everyone has such a straightforward recovery, despite the fact that only 50% of my nerves were spared.

I was unlucky to be diagnosed at such a young age - but it is probably because of the same that my recovery so far has been good.

I did ask my surgeon how long it would be until I got symptoms if I just left it. He said it could be years, but by the time I have symptoms it could have spread to other places and at 41, I have a lot of life ahead of me. I didn’t need to hear anymore - I wouldn’t change my decision now in hindsight.

Good luck with whatever you chose to do.

User

Posted 01 May 2020 at 18:41

I was 61 when diagnosed with not dissimilar numbers to yourself. I had RALP (robotic surgery) removing the prostate. Firstly the this sites tool is great as I used it to direct my thoughts and everyone’s journey is slightly different. Without sounding flippant I was passed my sexual prime and peace of mind were important considerations.

So I don’t confuse you too much, in my case after surgery my histology report significantly upgraded my cancer to T3B as it was a far more aggressive form of the cancer - it was 6 weeks between mri/biopsy and surgery I went from T2N0 to T3b and a Gleason of 9. In hindsight surgery was exactly the right course of action for me. After 18 mths PSA is ‘undetectable’ - golden words!!

On the other hand, on the negative side, I do have erectile dysfunction and whilst I still have orgasm I am achieving about a 70% erection and of course no reproductive ability. No Leakages or accidents. So perhaps sexual activity maybe an important consideration for you - and understandably so. Not every man having RALP has ED but I suspect it’s more common than published.

From my experience/learning the key to this is to ensure you have an accurate diagnosis of the nature of the cancer itself, make sure you aware of the side effects and your partner/wife is with you on the journey. I found the Macmillan nurses and consultants at Epsom hospital to be very good at providing information - and I did ask an awful lot of questions.

In the back of my mind i think if your specialists suggest AS then take your time to make your decision.

User

Posted 30 Apr 2020 at 09:51

I'm 41 and diagnosed just over a month ago.

I've been sent a little booklet that had quite a lot of information in it, but none which really helped with making a decision on treatment.

Am I just being paranoid, that I'm being fobbed off until after the pandemic has passed? Or is active surveillance still an option with a score of 7?

Thanks

guys and stay strong

Lee

User

Posted 30 Apr 2020 at 13:43

Hi Jackfan78

I'm quite a bit older at 57 but was still a shock when I was diagnosed 2 1/2 years ago. A bit like you it was the possible issues of incontinence and ED that played heavily on my mind. I went on AS for a while (initially was T1 and only 2 cores of 12 at less than 5%, G3+4) In the end when things had progressed to T2A I bit the bullet and had an open, nerve sparing RP.

That was just over 5 weeks ago.

I have very minor incontinence that continues to improve ( a pad late PM to catch a few drips and that's about it) and I can maintain an erection/have sex with 50mg of Viagra. I'd expect things to continue to improve but in all honesty if I'd have known I would be in this type of shape 5 weeks on I would probably have had the op sooner.

I picked a very good surgeon with a lot of experience.

Everyone is different and nothing comes with guarantees but just wanted you to know that the impact is not necessarily as major as you might think based on my experience so far.

A lot depends whether the margins are clear and nerves can be spared

Hope that helps

Edited by member 30 Apr 2020 at 13:53 | Reason: Not specified

User

Posted 30 Apr 2020 at 17:42

Originally Posted by: Online Community Member

Mike that's excellent news.

How do you go about picking a surgeon? Did you go private or NHS?

In the first instance (when I was first diagnosed) I asked a doctor friend of mine who did some digging and he came up with a highly recommended name. Then later 2 colleagues of mine were treated by him (independently) and had reached the same conclusion and they had good outcomes. Plus did some research and all his results were available on line. So, for me, I was sure, he was the best guy for me. I had medical insurance so it was done privately but I would have paid if necessary. I was also lucky that one of these colleagues had exactly the same procedure as me but a few months earlier so he talked everything through and I knew what to expect. He had no incontinence after his operation and was sexually active after 5 weeks. As I said before, every case is different, but it gave me some hope that there could be a decent outcome.

User

Posted 01 May 2020 at 14:06

No, you are misreading it Barry. What Jackfan was trying to say was "COVID and fear of going to hospital is not the reason I am on AS. I am on AS because that is what my urologist recommended."

Personally, I think he is quite right to question now whether AS is indeed the best option for him or whether the urologist is only recommending AS because of COVID.

Edited by member 01 May 2020 at 14:07 | Reason: to get the italics

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

User

Posted 02 May 2020 at 11:11

"There is a lot of statistics that I didn't know about until the last 2 or 3 days(not had much sleep this week) that shows that ED is not a long term issue, and the incontinence is over rather quickly."

Whoah - the men who struggle most mentally post-treatment are those who underestimated the likelihood of side effects or whose medics glossed over it all.

90% of men can get an erection 12 months post op but only about 60% can get an erection without chemical or mechanical assistance, and many of those can get an erection but not sufficiently firm enough for penetration.

About 90% of men are using one pad a day or less at 12 months, those who are using more may be using 6 or 8 pads a day for the rest of their lives.

Edited by member 02 May 2020 at 11:51 | Reason: Italics

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

User

Posted 02 May 2020 at 12:06

Hi Lee,

I thought I was young at 44 when I was diagnosed last year so very sorry to hear your story at 41!

Please click into my posts, I am now exactly 7 months post RP, let me know if you have any questions.

Jeff

Show Most Thanked Posts

User

Posted 30 Apr 2020 at 11:17

It’s the hardest decision ever mate. I was 48 when I reluctantly had surgery. Being young makes it harder in my opinion depending on how sexually active you are. But as men and women are all different , all of us men are different too. Some are just simply ‘ get it out at any cost ‘ and others are rightly petrified about the almost guaranteed life changing side effects whichever path you take. I hated having the op and all the side effects and the recovering from them. I’m now incurable but resisting any further treatment until pain kicks in. It’s ruined my life enough. I may get lambasted also , but I personally would take AS if it’s on the cards as treatment is very tough

User

Posted 30 Apr 2020 at 11:46

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

User

Posted 30 Apr 2020 at 11:52

Chris

Sorry to hear about the diagnosis.

That really does give me some food for thought.

Have any of the side effects eased or gone?

Lee

User

Posted 30 Apr 2020 at 12:01

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

User

Posted 30 Apr 2020 at 12:09

Hi flexi

What does the tertiary 5 mean?

And what is the C on the T2c mean please?

Are you saying it advanced after treatment or that they underdiagnosed before treatment?

Why wasn't AS an option?

Thanks

Lee

User

Posted 30 Apr 2020 at 12:36

Tertiary 5 means that although the vast majority of cells were a 4 and the next largest % were a 3, there were also some 5s seen on the sample. The tertiary number is usually only reported where there is some 5 pattern.

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

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

User

Posted 30 Apr 2020 at 12:58

Thanks lyn, I think I need to speak to my urologist and get some more answers as there is a lot of contrasting information from my urologist, on here and other sites.

Confused and worried.

User

Posted 30 Apr 2020 at 13:25

Yes Lee there is hope of recovery. If my damn cancer hadn’t already spread before my operation then I’d be in a great place now. It seems that these days people only suffer with incontinence for a shorter period. I was padless at 3 months. If you have nerve sparing surgery then erections can be regained but it is usually a long long long haul and plenty of input needed. I’m now back to 95% function but still need daily Cialis and a cock ring to work the magic. If you have surgery you will lose 1 to 2 inches over time when erect. I very much miss ejaculating and at 5 yrs can barely remember it tbh. Orgasm was very poor for me for a long time but now is as good as ever. So it is possible to have the dream outcome I guess for the lucky few. I think with Radiation ED will also happen but later on. Also loss of ejaculation. Apparently less probs with incontinence but again later onset.

User

Posted 30 Apr 2020 at 13:43

Hi Jackfan78

That was just over 5 weeks ago.

I picked a very good surgeon with a lot of experience.

Everyone is different and nothing comes with guarantees but just wanted you to know that the impact is not necessarily as major as you might think based on my experience so far.

A lot depends whether the margins are clear and nerves can be spared

Hope that helps

Edited by member 30 Apr 2020 at 13:53 | Reason: Not specified

User

Posted 30 Apr 2020 at 14:12

I would go for a second opinion based on your histology, tests and scans. HT might be a possibility to temporarily restrain the cancer for some time until you feel you could have treatment with less risk in a hospital. Some hospitals have gone to considerable lengths to keep Covid -19 patients separated from those not infected, so I would suggest you keep abreast of how this is being done at your hospital.

Barry

User

Posted 30 Apr 2020 at 15:36

In some areas, like ours, all COVID patients are at one hospital and the other hospitals are dealing with everything else. There are no COVID patients at the hospital where urology and oncology services are sited.

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

User

Posted 30 Apr 2020 at 15:57

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.

User

Posted 30 Apr 2020 at 15:59

Mike that's excellent news.

How do you go about picking a surgeon? Did you go private or NHS?

User

Posted 30 Apr 2020 at 16:03

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?

User

Posted 30 Apr 2020 at 17:42

Originally Posted by: Online Community Member

Mike that's excellent news.

How do you go about picking a surgeon? Did you go private or NHS?

User

Posted 30 Apr 2020 at 17:58

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

Thanks again all.

User

Posted 30 Apr 2020 at 19:40

They are all supposed to publish their outcomes - there are a few that ignore the requirement but most comply. The outcomes you are looking for are:-

- % of patients with positive margin

- % of patients who go on to have a biochemical recurrence within 5 years

- % who go on to need salvage RT

- % continent at 12 months post op (noting that 'continent' means using one pad per day or less)

- % that can get an erection 12 months post op (noting that this may be natural erections or by using chemical or mechanical assistance)

Also keep in mind that some surgeons will have amazing results because they cherry-pick and only do surgery on early stage T1/T2a cancers that are likely to have good outcomes whereas some surgeons' data doesn't look great because they take on patients that another urologist might turn away. You can work out whether s/he is a cherry-picker by looking them up on the BAUS website.

We self-funded for John to get a particular surgeon - he was at that time listed as one of the 'golden 5' even though on the face of it his stats weren't as good as some others because he had been piloting robotic RP with T2c / T3a patients.

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

User

Posted 01 May 2020 at 00:13

I was 41 when diagnosed, without symptoms. My PSA was 4.3, 2.9 and finally 7.3 all within around 6 months from the first test to the third.

I had an MRI which could not detect a cancer and although I was advised by the consultant that I was seeing at the time to wait for 3-months and have another PSA test, I elected for a biopsy.

I have had no real issues with incontinence and as far as erections are concerned; I began to function one week after my catheter was removed.

I know that not everyone has such a straightforward recovery, despite the fact that only 50% of my nerves were spared.

I was unlucky to be diagnosed at such a young age - but it is probably because of the same that my recovery so far has been good.

Good luck with whatever you chose to do.

User

Posted 01 May 2020 at 00:58

Cheers applejack

Again, that's what I want to be hearing.

Thanks again

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