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Diagnosed at 41 years old

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

Hi

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

User
Posted 30 Apr 2020 at 12:34

Hi lyn, thank you for your reply. 

The urologist suggested staying on AS indefinitely as it may never develop and having treatment now (or the side effects) would out way the benefits as its early stages.

But again, I'm worried as you have indicated that the earlier you get it, the more aggressive it is. 

Why would they not try to hit it hard and fast?

What does the C mean on the T2c?

Thanks 

Lee

User
Posted 30 Apr 2020 at 12:37
I have replied on your own thread 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Apr 2020 at 12:40

Thanks for this Lyn. This is interesting as my husband had not had a bone scan. So not sure where the M0 has come from in his score.   Will raise this with Surgeon on next contact. 

Mel

User
Posted 30 Apr 2020 at 13:36
If he hasn't had a bone scan, his diagnosis should be written as Mx .... they are only assuming it is M0 because G6 doesn't tend to go to bone or soft organs.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Sep 2020 at 14:54

Hi Mick78

I hope you are well?

I too was diagnosed at 41 (now 42) and very interested in this feed, thanks for sharing!!

Now considering prosectomy having been on AS. Keen to know how things are for you now?

 

many thanks 

Mike

User
Posted 21 Sep 2020 at 19:20

Hi Mike, my husband had prostatectomy about 10 weeks ago at age 44. He’ll be happy to talk through things also if you like. :)

Mel

User
Posted 21 Sep 2020 at 19:23

Hi Mel, that would be amazing and massively appreciated, yes please!! I would PM you but I’m not allowed to as yet as I’ve only just set up my full profile. Thanks loads in advance, Mike

User
Posted 21 Sep 2020 at 20:18

No problem. When you can. He’s more than happy to help out. :)

Mel

User
Posted 28 Nov 2020 at 09:26

Hi sorry for your news I was 47 when diagnosed Gleason score 6 T2c stage and opted for robotic prostatectomy without hesitation back in 2018 I’m not going to say it’s been easy but there is always light at the end of the tunnel if you stay positive. Happy to answer any questions just email me kind regards Andrew 

email in profile

 

Edited by member 28 Nov 2020 at 16:07  | Reason: Not specified

User
Posted 28 Nov 2020 at 15:29

Hey! How are you doing? 

Mel

User
Posted 28 Nov 2020 at 17:13

Originally Posted by: Online Community Member

Hi sorry for your news I was 47 when diagnosed Gleason score 6 T2c stage and opted for robotic prostatectomy without hesitation back in 2018 I’m not going to say it’s been easy but there is always light at the end of the tunnel if you stay positive. Happy to answer any questions just email me kind regards Andrew 

email in profile

 

You need to change your avatar so that it doesn't show your email address - you are opening yourself up to all sorts of spammers and weirdos. If you don't know how to change your name, contact the moderators fo advice. 

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

User
Posted 29 Nov 2020 at 00:35

Originally Posted by: Online Community Member
You need to change your avatar so that it doesn't show your email address - you are opening yourself up to all sorts of spammers and weirdos. If you don't know how to change your name, contact the moderators fo advice.

As far as I know, usernames are only visible to members, as are profiles.

User
Posted 29 Nov 2020 at 00:50
And we never get spammers or weirdos joining the forum?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Nov 2020 at 05:47

Originally Posted by: Online Community Member
And we never get spammers or weirdos joining the forum?

I’m probably the weirdest weirdo, direct from Weirdland, and I never really had cancer. I must have imagined it.

I’ll confirm that on Tuesday, when I get my latest PSA result on my iPad from the blood test at my local chemist at 07.00 on Monday.

Cheers, John.

P.S. What strange people would want to interfere with a cancer help forum? I am on a car website and we get loads of foreign spammers wanting to befriend us and offer guaranteed investments in Bitcoin...

Edited by member 29 Nov 2020 at 06:11  | Reason: Not specified

User
Posted 29 Nov 2020 at 16:00
Sadly, we have had our share although more often people trying to sell stuff - perhaps the weirdo posts and people putting up links to sell us all snake oil get deleted by the moderators before a lot of members see them. About 3 years ago, we had someone who pretended to be the wife of a newly diagnosed man - drew a lot of people into an ever-more bizarre story; we have also had the occasional fake diagnosis.

Good luck tomorrow (and with your bitcoin investments) 🤞

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

User
Posted 18 Dec 2020 at 01:06

Hi there

just been recently diagnosed in September - I was 48 (just turned 49 now).

I was given a range of options - I opted for SABR radiotherapy which was an intense 5 day course. No hormone therapy was needed and I had a SpaceOAR inserted to protect my rectum. I know there is some surprise in this group that radiotherapy was offered at my age, but my consultant offered it because I was so young....

I didn’t opt for AS because I would worry too much, and surgery just seemed too much. My side affects haven’t been to bad (just finished treatment 2 weeks ago) and I’m getting back to normal - we are hopeful of a cure. 

Happy to chat though - helps me get through this as well.

Jonathan

User
Posted 01 Aug 2021 at 00:34

good luck!

Edited by moderator 01 Aug 2021 at 12:48  | Reason: Not specified

User
Posted 01 Aug 2021 at 09:08
Reported
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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