Diagnosed at 41 years old

User

Posted 08 Jan 2020 at 02:57

Hi Chalkmate, happy new year! We are in exactly the situation as you were, and currently researching and weighing up the pros and cons for my hubby who is in his early 40s, G6 in one quadrant of his prostate, 3/3 targets biopsy showed G6 with 56%, 58% and 27% of each cores and with another 4 cores of 5% 6% and 27% in other cores but in the same quadrant. He has been on active surveillance coming up to one year now, psa fluctuating between 4.4-5.6. We are stuck with focal, AS or surgery.

Thinking about a second one-year confirmatory biopsy but a worried about seeding issue with biopsies and wonder if this has bothered you? But hoping another biopsy would indicate if any growth has happened so that we can move on with a course of action. The current waiting strategy is certainly stressing me out quite a bit.

Did you go for retzius sparing or not and which surgeon did you choose in the end? I have drawn up a list of all the top surgeons in London and we are absolutely clueless of how to make a decision... your advice and experience will be highly appreciated! Thanks very much!

User

Posted 08 Jan 2020 at 05:48

Wow PitJ, this is amazing! Hubby would definitely like to achieve what you managed for a good ten years of AS and still going!!

A bit of background, hubby is in his early 40s, G6 in one quadrant of his prostate, 3/3 targets biopsy showed G6 with 56%, 58% and 27% of each cores and with another 4 cores of 5% 6% and 27% in other cores but all in the same quadrant. He has been on active surveillance coming up to one year now, psa fluctuating between 4.4-5.6. We are stuck with focal, AS or surgery.

Thinking about a second one-year confirmatory biopsy but a worried about seeding issue with biopsies and wonder if this has bothered you? How many biopsies have you had for the past ten years and has there been any increase of volume? I’m guessing that the Gleason remained a 6?

we are hoping another biopsy would indicate if any growth has happened so that we can move on with a course of action. The current waiting strategy is certainly stressing me out quite a bit. How do you manage the psychological side of things?

Your advice and experience will be highly appreciated! Thanks very much!

User

Posted 08 Jan 2020 at 06:12

Appletree, you don't need to keep writing all the information out. Also, it is easy to overthink things if you only have a little bit of information. There are no known cases of 'seeding' in the UK and in those alleged cases in the US, the man had template biopsy with significant cancer, not small foci of G6. Seeding is unheard of with TRUS and very few urologists believe it is a real thing. Your OH cannot be on proper AS without at least an annual biopsy and mpMRI.

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

User

Posted 08 Jan 2020 at 10:19

Thanks very much for this Lyn. We are trying to wrap our heads around things and I’m new to the forum, can’t quite private message yet, so apologies for the multiple messages. This is extremely helpful. Does it matter if which urologists to use for TPM biopsy or the Prof would have a more accurate biopsy result, or that’s just completely random whoever you go to and hence doesn’t really matter? Thanks lots again!

User

Posted 22 Feb 2020 at 16:06

Hi all,

I decided to go with surgery, robot assisted prostatectomy.

I am 4 weeks post OP as of yesterday. I had surgery on friday 24th jan and was sent home on sunday 26th.

Bar the hour or 2 post OP, I have had zero pain. The most annoying part of the first few days was the catheter. I hated it, but was just annoying, rather than painful. Correct catheter care is essential as I was a bit easy going and ended up with an infection after it was removed.

After catheter removal, I have to say I got a little disheartened as I was leaking quite a bit, had very little control and was wearing quite a large pad (small nappy). But that was short lived. Catheter out 2 weeks now, infection has cleared and I have pretty good control, little leakage and am only wearing a small (Tena for men) pad, quite like a sanitary pad. Unnoticable. This will get better with every day that passes, so dont lose heart.

With regard to erectile issues, I'm taking viagra twice a week to stimulate blood flow. This seems to be working well but havent tried sex yet, but will do in the coming days. Unable to get an erection without viagra yet but its early and this can take a bit longer to recover.

I am happy with my decision and after early disappointment, the last few days have see huge improvement. If you have any specific questions, please do ask.

Take care.

User

Posted 22 Feb 2020 at 20:02

Viagra doesn't do anything to aid penile recovery; if you can get it changed to Cialis, that would be better.

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

User

Posted 22 Feb 2020 at 20:15

You could click my picture and read my profile I was48 at surgery. If they had got the cancer I’d be in an amazing place now. Fit , healthy , working ,zero incontinence , full erectile function with daily 5mg Cialis etc etc

Sadly they didn’t get the cancer and I’m now incurable at 52 , but heh ho like I say if they’d got it I would be very happy. Hope it all works out for you.

Regaining EF is something you have to work VERY hard at ok. Never give up or take no for an answer. And don’t be waiting months for appointments. Guide your own recovery and steer it. Plenty of advice on here

User

Posted 22 Feb 2020 at 21:53

Mick, glad the surgery is over. Here’s to a successful recovery.

ulsterman

User

Posted 18 Mar 2020 at 06:54

Hi All,

I’m another sub-45 year old (44) just been diagnosed. Having an RP soon. Does anyone know which ‘You, me and the big C’ podcast date has the RP robotic surgery account?

Thanks,

Steve

User

Posted 18 Mar 2020 at 07:22

Hi Steve,

Sorry that you have just received diagnosis as well, “so young”. No one said those words to us 4 weeks ago.

My husband and I weren’t aware of the podcast, so putting a link here to the male specific C Episode. Not sure if it contains what you are looking for but link may be helpful for others Will keep looking...

https://www.bbc.co.uk/programmes/p07tddgt

Best of luck with everything!

Mel

User

Posted 18 Mar 2020 at 07:38

Hi Mick,

How are you doing several weeks after RP? Still positive? Waiting for a date ourselves still, shouldn’t be much longer, as long as the other C doesn’t interfere!

Thanks,

Mel

User

Posted 29 Apr 2020 at 14:02

I was 46 at diagnosis. All went well for 9 years. Im now at end stage but have a wealth of experience based advice. This site doesnt work well so you can contact me on consumer.cashin@yahoo.co.uk

Bazza (Barry)

User

Posted 30 Apr 2020 at 01:02

I'm also 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,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 30 Apr 2020 at 08:47

Hi Jack,

Sorry that you have had this news too. It’s awful at the best of times. There seem to be many parameters to guiding treatment than Gleason alone, as my OH is awaiting a RP with a Gleason of 6 but a T2CN0M0 as far as they can tell until post surgery pathology. He is only a few years older than you. His treatment is going ahead, how delayed it will be we don’t know. We were originally told April/May. Now 3-4 months maybe.

Have they given you any details? If you are unsure I would put a call in for an explanation so you can understand the decisions, and/or challenge them if you are unsure.

Edited by member 30 Apr 2020 at 08:48 | Reason: Not specified

Mel

User

Posted 30 Apr 2020 at 09:23

Jackfan the presence of any 4 in your G score is a concern for active surveillance BUT what is most important for AS is the quantity of cancer in the cores and that you have good imaging so you can have an accurate staging.

I must admit the thought of ongoing AS for hopefully 40 years+ would be enough to make me want curative treatment.

Nomograms at MSK https://www.mskcc.org/nomograms

Plus others can provide a risk based view of the likely benefits of treatment.

User

Posted 30 Apr 2020 at 09:23

Lee,

I would suggest you start your own thread, rather than tag on to an existing one.

You haven't got your full diagnosis in your profile/bio, so it's difficult to suggest what might be sensible in your case. Useful things to give are PSA test results (with dates if there's more than one), mpMRI PIRADS or Likert score (1-5) and any associated comments about size and position, biopsy results (of which gleason 7 is part, but is it 3+4 or 4+3, and how many samples, and it will usually say the longest tumor sample too, did you have a whole body bone scan, and finally the staging (such as T2cN0M0).

You may not know everything (in which case it would be good to ask), but put in what you do know.

At your age, and if they offered active surveillance, I suspect the active treatment they would offer would be prostatectomy. You are rather young for radiotherapy. Anyone who is on active surveillance can switch to active treatment anytime.

Anyway, I suggest you start a new thread and update your profile/bio if you have any more details.

User

Posted 30 Apr 2020 at 09:24

Hi thanks for the reply

I had a phone call where they told me Al the results and numbers, in all honesty, the only bit I heard was "you've got prostate cancer" the rest was a bit of a blur. But I've had a letter stating that I am T2c N0(no idea what this means), mri showed low signal in peripheral zones bilaterally and a psa of 6.8,g/l.

Biopsy total of 3 out of 10 cores gleason 3+4=7

And thank you MK for the private message, I can't reply as I'm new and the system says no.

Cheers

Lee

User

Posted 30 Apr 2020 at 09:30

Cheers Andy,

I did try to star a new thread but I kept getting an error message.

I'll try again this morning and will update my profile.

Thanks

User

Posted 30 Apr 2020 at 09:32

Thanks for the reply francij.

I think I'd rather stay on AS for life than have curative treatment so long as it doesn't develop. But I'm so confused as to why I've got a 4 in my gleason, if it isn't developing.

User

Posted 30 Apr 2020 at 12:19

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.

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.

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

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