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Advice needed....

User
Posted 12 Jan 2018 at 12:05
Hi all,
I’m a 40 year old male who has just been diagnosed with prostate cancer and would appreciate some advice on my next steps. My background story is as follows: I went to GP back in Sep-17 with a one off incident of blood in my semen. A PSA test came back as 7 and I was referred to a Urologist. Repeat PSA showed no change and DRE was fine but was sent for MRI and biopsy. Also had cystoscopy and urinary tract ultrasound which were both fine. I had a mpMRI which came back all clear apart from a fuzzy patch on the left side of the prostate which they suspected was inflammation/prostatitis and assigned a PIRAD score of 3. Had a TRUS biopsy just before Xmas where they took 12 samples, 6 from left and 6 from right. Results came back this week and 3 out of 6 on left hand side showed cancer, all with Gleason score of 6. Right hand side was all clear. My staging is T1c. Also had a bone scan which came back all clear. The consultant said I’m the youngest he’s ever seen diagnosed (unwelcome award!) and, based on an algorithm on the www.mskcc.org website, has suggested robotic surgery based on the fact the algorithm returned a 41% chance of my cancer breaking out if I chose active surveillance. These are the only choices available to me: full removal or active surveillance. Given my age and the general view that younger men can get more aggressive cancer, my consultant feels it’s too risky to do active surveillance and said that my cure rate is as near to 100% as it can be given that my cancer is currently low grade and localised. Interestingly the cancer nurse who works with him said that if she were advising a member of her family she’d recommend active surveillance!! I’m worried about the side effects of surgery but can take some comfort that I’m young, fit and healthy which should stand me in good stead. I’m remaining positive but obviously face a crucial decision over the coming days. I’m leaning towards surgery as I have a young family and don’t want to risk anything but I’d appreciate any advice you may have based on your own experiences or expertise on either option facing me to help me with my decision. Many thanks all. Andy
User
Posted 13 Jan 2018 at 22:16
Hi Peggles,
Thanks for your reply. The MDT team apparently debated my case long and hard due to my age and low score. They eventually recommended surgery on the basis of the near 100% cure rate probability and eliminating the risk of any change down the line. My wife is also wanting me to have surgery. Her thinking is simple -she’d rather have me around albeit at a potential cost of some extra nooky!! I’m hoping obviously I can still do that in some form of another!! As you can tell I’m becoming more and more certain that surgery is my way forward. As my consultant said, I have potentially another 40 years ahead of me and why risk it for a bit of my body that’s showing signs of failing on me??
Thanks,
Andy
User
Posted 12 Jan 2018 at 21:10
Hi Johsan,
Thanks for the reply. My Gleason score was 6 (my PSA was 7). I work in the NHS for a different trust to where my treatment is so I was able to get a second opinion. Interestingly the second consultant thought active surveillance would be appropriate for a while at least but he understood the reasons for my consultant recommending surgery. The NICE guideline for a Gleason score of 6 is active surveillance but given my young age they think surgery is the best option. I’d be really interested to hear from anyone who has had a similar decision to face and if there’s anything else I should be considering. Thanks
User
Posted 13 Jan 2018 at 20:36
Hi all,
Thanks for your responses- I appreciate you all taking the time to reply and share your experiences. I’m a white male with no family history. When I say no family history, I mean none of my family have ever had the need to be biopsies so for all I know my 67 year old dad may have it but doesn’t know and is living with it. I can only go by what I know at the moment. That I have low grade Gleason 6 cancer which hasn’t spread (per bone scan) and per mri has shown no signs of spreading to lymph nodes or surrounding areas. As my consultant said, the only way we’ll know for sure is by taking it out and properly testing it. I don’t think I can take the gamble and do AS. Linda- I appreciate your note of caution around surgery and the effects on my sex life. My wife and I are concerned but we can only go by what we know and we feel we have a good chance of saving my nerve endings. At the end of the day I’d rather be around to see my beautiful twin daughters grow up and my wife wants me around as well (thankfully!!). I am still very positive and already this experience has taught me how precious everything is, and I’m determined to keep hold of it. Thanks again all, Andy
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User
Posted 12 Jan 2018 at 18:58

Hello Andy
The only advice I would give is to not rush into anything.


I hope you get others from here offering their take on your situation. How was your 7 made up do you know ie 3+4+7 or 4+3 = 7?


Would it be possible to get a second opinion on the operation?

Edited by member 15 Jan 2018 at 09:26  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 12 Jan 2018 at 21:10
Hi Johsan,
Thanks for the reply. My Gleason score was 6 (my PSA was 7). I work in the NHS for a different trust to where my treatment is so I was able to get a second opinion. Interestingly the second consultant thought active surveillance would be appropriate for a while at least but he understood the reasons for my consultant recommending surgery. The NICE guideline for a Gleason score of 6 is active surveillance but given my young age they think surgery is the best option. I’d be really interested to hear from anyone who has had a similar decision to face and if there’s anything else I should be considering. Thanks
User
Posted 12 Jan 2018 at 22:01

Hi Andy,

It is difficult to know how to proceed when professionals give options, particularly when their views are different. Arguments can be made for and against either option as I am sure you are aware because at this stage at least nobody can be certain how the disease will progress. Do you have surgery soon and get the best chance of eradicating the disease now but at the price of various highly likely side effects or take a calculated chance that AS will defer treatment and side effects but still enable the disease to be caught in sufficient time for a cure to be effected? It is a question that only you can answer whichever way others would adopt.

It may have crossed your mind but should you opt for surgery although possibly want children in future, you should consider having some of your sperm stored in a sperm bank.

Barry
User
Posted 13 Jan 2018 at 10:45
Andy

I was 46 last year when diagnosed. I had the robotic prostatectomy. I was T3a and Gleason 7 at diagnosis. In the lab post-op, I was upgraded to Gleason 9 and T3b. I had the surgery because I felt given the data above, it was the best option. And if the surgery didn't work (which it hasn't), I could have a second bite of the cherry with radiotherapy.

In your situation, I'd be cautious and not rush. You have a bit of time. Have you spoken to one of the specialist nurses from this site? They're really good.

I have no regrets about the pathway I took. But it has its consequences. I was non nerve sparing so total ED. Incontinence wasn't an issue. If you do go for the prostatectomy, start your penile rehabilitation as soon as is safely possible after your surgery. The surgery itself wasn't too bad.

Best of luck with your decision.

Ulsterman
User
Posted 13 Jan 2018 at 17:00

Hi Andy - You are young and seem to have been diagnosed by chance - although you probably don't think so at the moment this is a good thing - you have cancer but early diagnosis is by far the most important factor in cancer cure.




Judging by your Gleason score and biopsy result you have what would seem to be, at the moment, a contained relatively small area of cancer that is, as yet, not very aggressive. With surgery now, at your age and with your cancer spread, recovery should be quick and your chances of successful nerve sparing high. Your chances of full recovery of sexual function should be very good and your chances of full cancer cure around 96% or higher. With the surgery the only thing more or less guaranteed is that future orgasms will be dry (no seminal fluid) but this shouldn't really be a big concern as it shouldn’t effect your sexual function.




I chose radiotherapy but I was 59 - I assume you haven't been offered radiotherapy because of your age. Radiotherapy can, in a small number of cases, cause problems 15-20 years down the road and if you are 70 this shouldn't be a concern - you on the other hand will still only be 60 in 20 years.




You say Active Surveillance is an option but as I understand it this means checking PSA levels regularly and then having repeat MRI scans or biopsies if there are any sudden rises. PSA numbers and MRI scans are not an exact science - you can have a PSA of 5 and still have a more aggressive cancer than someone with a PSA of 20 - also MRI scans can show false clear results when cancer is present - as mine did. Biopsy is the only surefire way to check progression so active surveillance could mean regular biopsies which is not a pleasant thing.


These links are quite well informed and well written articles from last year and I have quoted an interesting paragraph below. (hopefully the site will allow me to include links in my post as I found these very helpful myself).


http://vitaljake.com/active-surveillance-prostate-cancer/
http://vitaljake.com/erectile-dysfunction-after-localized-prostate-cancer-treatment/

“If your doctor says you are a candidate for active surveillance, and you don’t have a family history of cancer and you are not of African descent, you may want to consider it, because it won’t affect your sex life or your urinary continence. However, it is not fun to get repeat biopsies, and if you are the kind of man who will constantly worry about having cancer – even if it seems unlikely to progress – this may not be for you.
If you are likely to choose surgery after a few years of active surveillance because you don’t want to live with the cancer and you want peace of mind, then please understand that your chances of recovery of potency are better sooner rather than later. Younger men who are potent before surgery do better.”

You have the luxury of things not being overly urgent at the moment - take your time and get the Toolkit from this site and remember that any statistical figures you read are skewed a bit towards people much older than you.
Be positive - Rather than get too depressed about having cancer try to balance your thoughts in terms of how lucky you are that you have been diagnosed very early and therefore your outlook at this stage for full cure and problem free recovery are extremely high.
Tony

User
Posted 13 Jan 2018 at 17:41
Originally Posted by: Online Community Member
..... With surgery now, at your age and with your cancer spread, recovery should be quick and your chances of successful nerve sparing high. Your chances of full recovery of sexual function should be very good and your chances of full cancer cure around 96% or higher. With the surgery the onlything more or less guaranteed is that future orgasms will be dry (no seminal fluid) but this shouldn't really be a big concern as it shouldn’t effect your sexual function.
 ......

....... Be positive - Rather than get too depressed about having cancer try to balance your thoughts in terms of how lucky you are that you have been diagnosed very early and therefore your outlook at this stage for full cure and problem free recovery are extremely high.
Tony



Sorry Tony, I disagree with some of what you have written here. How can you know that he has a 96% chance of cure? As his doctor has already made him aware, very young men tend to have a more aggressive version and I think the chance of living another 40 years without it ever coming back are probably very slim. You only gave to look at other young members here to see how many have to have adjuvant or salvage treatment.

And as to the comments about sexual function, I think you are painting an unrealistically rosy picture. Dry orgasm can deeply affect a man's idea of his own masculinity, it can also be extremely painful for some men. Even for men who do regain erections, the loss of penile length and girth can be deeply distressing to the man and frustrating to his partner. Full nerve sparing can in no way guarantee returning natural sexual function.

Basically Andy, sex will never be the same again. Prepare for the possibility that penetrative sex may never happen again, or it may happen with tablets / injections / vacuum pump but you may find it difficult to orgasm or it may be too small for your favourite positions. Prepare for feeling that you may not be a full man anymore and perhaps your partner would be better finding someone else, or that sex would be okay but you leak urine which is embarrassing so you don't want to try just in case. And allow for the fact that a significant proportion of cancer patients get depression.

And then set all of those possibilities against the fact that one side effect is to be alive and without taking these risks, you might not be around in 10 years to support and love your partner and children. You might be very lucky and regain sexual function, hopefully you will not be left with any permanent incontinence but if you do, you will be prepared for it. The men on this forum who have struggled most in the past are the ones who had no idea of the potential side effects (sometimes down to over-optimistic surgeons downplaying the risk) or didn't really think any of those things would happen to them because they were young.

I speak from experience - and my husband was 10 years older than you but at the time, the youngest patient they had had at our hospital. He really believed that being incontinent or impotent must be about old men having the op. If you want to see how it played out for us, the thread is called "one wife's story of ED"
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jan 2018 at 17:44

PS - Andy, are you Black African by any chance?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jan 2018 at 20:29

Hi Lyn


I think Andy said himself   "my consultant feels it’s too risky to do active surveillance and said that my cure rate is as near to 100% as it can be given that my cancer is currently low grade and localised."  My cure figure is based on what I have read for low grade non aggressive localised cancer, which he said he currently has, for which he was to have surgery sooner rather than later - and is basically what his consultant was saying. Also if he has full prostate removal now while his cancer is low grade and contained and before it gets aggressive the published figures for chances of it coming back are low.


On the sexual / incontinence front there is a negative side yes and I am sure he will read all about the possible side effects - the Toolkit is goods on this - but even with the most up to date figures of between 30% and 70% chance of some permanent ED (younger more vital patients with contained low grade non aggressive cancer usually at the lower end) there is a good chance of positive outcome in his case. This is not to say that worst might happen - just that a good outcome is a good possibility. I will always try to play up the positive side when people are worried - reading totally negative things about what to expect from my future sex life made me refuse a biopsy for 4 months and almost made me tell the consultant "No treatment - I'll just take my chances thankyou" - Stupid I know but this is what worse case stories did for me - However a few positive posts I read from people with good outcomes eventually persuaded me to get the biopsy and then get treatment. Ive been through 6 months hormone therapy and a month of radiotherapy and apart from loss of libido - which should return - I have maintained sexual function throughout and one week after all treatment has ended I can honestly say sex is pretty close to pre treatment except that orgasm is dry which was weird at first but we are now seeing as a bonus.


But thats just my experience - Who knows what the future will bring but my outlook is that the worst could happen and things could always come along to knock me back but always find a positive to help me through.

User
Posted 13 Jan 2018 at 20:36
Hi all,
Thanks for your responses- I appreciate you all taking the time to reply and share your experiences. I’m a white male with no family history. When I say no family history, I mean none of my family have ever had the need to be biopsies so for all I know my 67 year old dad may have it but doesn’t know and is living with it. I can only go by what I know at the moment. That I have low grade Gleason 6 cancer which hasn’t spread (per bone scan) and per mri has shown no signs of spreading to lymph nodes or surrounding areas. As my consultant said, the only way we’ll know for sure is by taking it out and properly testing it. I don’t think I can take the gamble and do AS. Linda- I appreciate your note of caution around surgery and the effects on my sex life. My wife and I are concerned but we can only go by what we know and we feel we have a good chance of saving my nerve endings. At the end of the day I’d rather be around to see my beautiful twin daughters grow up and my wife wants me around as well (thankfully!!). I am still very positive and already this experience has taught me how precious everything is, and I’m determined to keep hold of it. Thanks again all, Andy
User
Posted 13 Jan 2018 at 20:47
Firstly, apologies Lyn, I think I wrote Linda in my first reply. Just to add that I have been quoted a 98% chance of the cancer not returning if I had surgery based on my results so far (stressing so far). Thanks
User
Posted 13 Jan 2018 at 21:40
Hi Andy.
I think you have every reason to be positive as your pre treatment figures look so good. As others have said there is no need for an immediate decision but of course the decision must be yours ( perhaps with some input from your wife?) I know I was glad my husband opted for surgery but as it was also the advice of the MDT it seemed a no brainer!
Has your case been looked at by the MDT? As for active surveillance some men can live with the waiting but can you? Only you can know . As one previous contributor said ( who was treated successfully as far as he can tell) he wanted to deal with the cancer whilst it was weak and he was strong.

Good luck to you whatever you decide.☺
User
Posted 13 Jan 2018 at 22:16
Hi Peggles,
Thanks for your reply. The MDT team apparently debated my case long and hard due to my age and low score. They eventually recommended surgery on the basis of the near 100% cure rate probability and eliminating the risk of any change down the line. My wife is also wanting me to have surgery. Her thinking is simple -she’d rather have me around albeit at a potential cost of some extra nooky!! I’m hoping obviously I can still do that in some form of another!! As you can tell I’m becoming more and more certain that surgery is my way forward. As my consultant said, I have potentially another 40 years ahead of me and why risk it for a bit of my body that’s showing signs of failing on me??
Thanks,
Andy
User
Posted 14 Jan 2018 at 11:16

Well said Andy you seem in a good place - " near 100% cure rate and 98% it wont return"  wow, I'd take those figures all day long !


All the very best of luck.


Tony

User
Posted 14 Jan 2018 at 12:30
Thank you Tony and I did really appreciate your posts. None of us know what the future holds but as you say from what I know so far it’s positive and I’m approaching it with that mindset. I have to for my sake and for that of my wife and family
User
Posted 14 Jan 2018 at 18:48
Personally, based on what I know now I’d snap the medics hands off for a 98% chance of a cure (unfortunately mine is incurable). However, don’t underplay the sexual performance issues as I’ve found that really hard to deal with. My treatment has totally emasculated me and I hate it so much I’ve thought on several occasions about stopping medication and letting nature take its course
User
Posted 14 Jan 2018 at 20:22
Hiya Andy
I'm also new to the site. I was diagnosed in early 2015. As my cancer was contained within the capsule I immediately opted for active surveillance.But, within a week after much research with my partner, my mindset completely changed and we went for a Da Vinci removal for the same reasons mentioned by our other contributors. I'm really sorry that this has come to you at your age, but you do sound positive ,and moreover the survival figures given by your consultant are, excellent. Take care mate, and stay as strong as you can.

Edited by member 14 Jan 2018 at 20:44  | Reason: Not specified

User
Posted 15 Jan 2018 at 08:03
Hi Bestie,
Thanks for your reply. Sorry to hear that your PSA is on the rise again, especially as you were told it was contained at the time you had your surgery. Were you also diagnosed with Gleason 6 cancer? Obviously it’s a concern when I hear of supposedly contained cancer potentially causing issues. All I can go by is the stats I’ve been given which are very positive but it’s clear there’s a lot of unpredictability with this disease.
Thanks,
Andy
User
Posted 15 Jan 2018 at 08:55
Hi Andy,

It does seem to very much an individual decision. My husband was diagnosed with Gleason 6 just over a year ago and advised on surgery ( age 52) . He decided against due to the high risk of side effects and the ProtecT trial showing the l10 Year results of Gleason 6 patients on active surveillance is the same as for those given a radical treatment. So the risk of over treatment really concerned him.

However the risk of under treatment is also a very real concern so I really understand those going for a radical treatment and we may still find ourselves going there one day.

Fingers crossed for a middle ground treatment to be introduced in the UK as this low risk diagnosis leaves men between a rock and a hard place.

Good luck with your decision making

Clare
User
Posted 15 Jan 2018 at 09:59
Good morning Andy,

My Gleason was 7 with a psa of 9.1 at 57 years old. Yes, it is disappointing that I need further treatment, I feel abit poleaxed at the moment, but again having looked at the statistics, I will regain some of my innate optimism. I can see how this can be worrying for yourself but your own stats remain the same so I would keep taking heart from the "excellent " prognosis offered by your consultant. I have hung onto every positive adjective used by my own specialist ! Your thoughts are likely to fluctuate along with longer periods of calm despite every one of us being different. The post from Claret was interesting, and worthy of researching ( Protec T trial ) and you still have time to give the whole thing some thought before you make your decision. All the best to you Andy.

Paul.
User
Posted 15 Jan 2018 at 21:28

Here us a link

http://www.ox.ac.uk/news/2016-09-15-largest-uk-trial-treatment-prostate-cancer-publishes-first-results

We found it interesting. Our surgeon ( unused ATM) publishes real time side effect data ( he is considered a top surgeon)

https://www.birminghamprostateclinic.co.uk/prostate/live-results/erectile-function-12-month-results/

This is also interesting to us but we did wish the dark green zone info was more transparent ...tablets or no tablets and 'sufficient for sexual intercourse' being compared with prior to procedure ( 70% strength for example)

I do like as much info as possible before making a decision but I have learnt on here that we are all very different..

Good luck

Clare

User
Posted 16 Jan 2018 at 10:49
Hi Claret,
Thanks for that info- very interesting. I’ve asked my consultant to get the ball rolling on robotic surgery. It does come down to personal choice and I’d rather try to get on with my life without worrying about how this disease may change, hoping of course that they’re able to remove it completely. I read a report which concluded that surgery is the most prudent treatment in younger men because I’m hoping to live a lot longer than 15 years. My wife is fully supportive- in fact she was pushing me towards surgery based on the stats we were provided with if we let this thing go on. As with anything around this disease, you take your chances and hope for the best. That’s what I’ll be doing regarding the side effects of surgery, hoping that I’m lucky to come away with my nerve endings and have the best life I can. Again the figures suggest that my age and prognosis should help me in that respect.
Thanks,
Andy
User
Posted 16 Jan 2018 at 12:10

Hi Andy
I was 48 at surgery. Unfortunately I already had spread and the op results were pretty awful. They didn’t even think RT would give cure so I rejected it.
HOWEVER I just wanted to say to you that a fantastic recovery can be had , but it’s a long hard journey with a good partner. I was continent in 3 months but I guess that can be just luck. I am now back to absolutely full erections but take daily Cialis for this. Surgery does reduce penis size though sadly. If I’d been cured I’d be in a great place , but it’s taken 30 months tbh


If life gives you lemons , then make lemonade
User
Posted 16 Jan 2018 at 13:46
Hi Andy

Chris j mentions size reduction. I was warned of this but it didnt happen and I have no notable reduction. My Pca was left to long which meant only 50% nerve sparing and still ED after one year. I'm glad its out but wish it had gone sooner.

Best of luck

Cheers

Bill63


 
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