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Diagnosed at 41 years old

User
Posted 27 Nov 2019 at 12:37

Hi everyone,

As the title suggests, I was diagnosed with prostate cancer 3 weeks ago, at the age of 41. I have been given the option of radiation therapy or removal by surgery.

Is there anyone on here of a similar (same) age that can talk about their decisions and how they have coped following treatment/surgery, regarding side-effects, general health?

Thanks for your time!!

User
Posted 10 Dec 2019 at 13:19

Hi Mick.

I'll quickly summarise my story. I was diagnosed at 48 with G3+3 and placed on Active Surveillance. 12 months on and following a further MRI and Biopsy, I was advised to consider RARP. Long story short, I opted for that within 48 hrs, met the surgeon about a week later and had the procedure about 4 weeks thereafter in September. Ultimately, the age factor was compelling in my consideration of what treatment choice I should make.

In that 4 weeks before the operation, I really didn't stop to dwell on it. It was a factory line that I couldn't get off so I just kept busy. Kept going to the gym, kept socialising and told very few people. I was pretty focussed - Gloves on, gumshield in. We're doing this. Oh, ....I also had as much sex as I could!!

On they day itself, I was in theatre within an hour of walking through the hospital door (1st surgical slot of the day). When I woke up, there was no pain, though I was pretty groggy for 36 hours. I had family support and for that I am very grateful.

I had a cathetar in for about a week. Thats not great, but one week of your life...no problem. I even managed to do what I was told was impossible....I filled my night time bag ha ha!! For me, continence was good thereafter. I never had pain. I took painkillers for a week due to fear of pain and when the cathetar was removed, I was advised to stop taking them to see whether I encountered any. I didn't.

However - the painkillers do bring fairly pretty severe constipation and given the nature of the operation, that's not great but I had a nurse who kept banging on about eating stewed fruit 3 times a day and to keep hydrated - which I did and I was just about OK. Its not terrible, but treat it VERY seriously.

For about the next 4 weeks, I pottered about and went walking. Then I started drinking again and began to really enjoy life as I wasn't yet back at work (I was signed off for 10 weeks). At about week 8 I started swimming and now I'm back in the gym and working out at about 70% effort.

I've had my follow up following surgery. I was upgraded from G3+3 to G3+4 and my PSA is now undetectable <0.03.

Which leaves ED. All medical staff tell me its early days. I'm following my rehab program and I'm taking large quantities of Sildenafyl. I can't pretend I'm not anxious, but the reality is that the data tends to suggest that this will take the best part of a year, possibly two. We'll see. But the reason I say this is because you have to be real with yourself. This isn't a broken arm. It is what it is.

If I win my ED battle, then I can assure you that there will have been NO regrets. Not once during this experience have I wished I'd taken a different course and I'm truly thankful for the early diagnosis. But that's my experience and it may or may not be close to yours. Whatever you decide, I wish you the best of luck.

..Twist.

User
Posted 03 Dec 2019 at 12:14

Hi Mick

I was diagnosed 3 years ago at the age of 46.  I opted for surgery.  Even the oncologist whom I met said surgery was my best bet based on my young age and my initial diagnosis of T3a and Gleason 7.  After surgery, I was upgraded to T3b and Gleason 9, so I'm glad i did have it removed.  No nerve sparing which means i have no hope ever of a natural erection.  The side effects should not be under-estimated especially as we may have a very long time to live with them.  Incontinence wasn't a big issue.  I've also needed follow up radiotherapy and hormone therapy and am meeting a lung specialist today to discuss possible spread to my lungs.  I'm hoping it isn't that.

The thing is though, you have to make a decision and then accept that decision and live without regrets.  That's what someone on this forum told me three years ago and it was a great piece of advice.

I notice on your profile that you're from or in the Republic of Ireland.  Are you living there or in the UK as most people will refer to the NHS in their answers which may or may not apply to you.  I'm in he south of England but come from Belfast originally.

Ulsterman  

User
Posted 27 Nov 2019 at 12:59
Hi Mick sorry you are here, seem to be getting more and more young members.

It would really help if you updated your profile with all your info regarding staging and G score.

I note you say you are still.hoping for kids, really important to get some sperm frozen before any radical treatment.

User
Posted 03 Dec 2019 at 09:16

Hi Mick,

Literally just signed up because I saw your thread. I'm 47.

I was diagnosed in Sept 2017 but then only had a Gleason score of 6, so was put on active surveillance - and my memory of events was that the Doctor pretty much told me that would be that for a good few years.

Well, it wasn't so I'm now a Gleason 7 and having spoken to several Consultants, Lead Nurse practitioners, anyone I could, they all advised RP because of my age. Younger seems better for recovery. Alternative options might then still need RP but by then I would be 10+ years older.

London hospitals are not generally doing brachytherapy in younger patients (secondary risks), radiotherapy is also  considered a risk for secondary cancers (one of the consultants I spoke to was a mate who deals with the secondary effects), again a heightened issue by being younger. Proton therapy  I was told was actually an old method, popularised in recent times by American health system as it is highly profitable (my Uncle went to Austria to have it done privately despite being quite old). HIFU was described as 'frontier stuff', with not enough data to prove its efficacy.

Which brought be back round to radical prostatectomy, which is booked for Jan 2nd. The main, well the only appeal of it is, that it should remove all the cancer and I will then be cancer free (all my cores are contained in one side of the gland), rather than waiting to see if it comes back or if I am going to get secondary cancer as a result of alternative treatment. Doesn't mean I'm not cr*pping myself about the incontinence and ED risks!

I've a daughter with Rett Syndrome a complex neurological disorder - she's a 1 in 12,000 - so whatever option I was given along with various stats like 2 in 10, 1 in 8 - I was mindful of the fact that someone has to be the '1'. 

Caveat - this is simply my personal view and the decision I came to. It's not often I think of myself as 'younger' but would welcome chatting with others in the same situation.

User
Posted 03 Dec 2019 at 09:52

At 53 I consider myself young also. I was diagnosed less than a week ago so I'm doing all the research I can on various options, also as I don't yet know the full extent of what I'm facing other than a Gleason 7, I'm not even sure what options will be open for me, so very much in limbo until I'm able to have all the tests, MRI etc. I have been looking at the hifu option because like yourself the thought of in incontinence and ED at 53 when I'm otherwise fit are not something I want. I know a certain TV star (deal or no deal) had hifu which seems to have worked for him. Yes it is all new in comparison to traditional methods, but if it's an option for you it seems to be worth trying, in the event of it not being successful, then there is the more severe option of having prostate removed. It's all personal choices and a hard decision for us to make, much sooner not be in this place at 53, but there you go

 

Good luck to you all, and hope everything goes well.👍

User
Posted 03 Dec 2019 at 21:03

That's great news mate, really pleased for you...stay strong everyone👊👊

User
Posted 08 Dec 2019 at 20:32

Mick,

I hope you are keeping well.

Just wanted to say i've just had my first psa test result after RP on the 1st October.......<0.1 undetectable! Feeling so relieved right now.

Good luck with your operation and hope your results are the same as mine.

Jeff

User
Posted 11 Dec 2019 at 20:48

My husband was diagnosed at 52 and we live in the US.  They don't recommend PSA tests in the US until 50.  My husband had slightly eleveated PSAs from the beginning of testing or right at the top of normal on follow ups.  For us we are the youngest when we see the doctor and feel very out of place.  I am certain you being even younger feel that way too.  My husband's Gleason score same as yours (3+4) after just 1 biopsy and he opted for the robotic nerve sparing surgery.  He had his surgery October 17th.  Doctor said it was textbook.

My husband is not athletic and a recovering alcoholic.  He was taking Zoloft for depression but he is working on getting off that and switching to Wellbutrin (FYI Zoloft known issue for ED so it is precautionary on his part).  He is healthy otherwise though.  The doctor informed us when choosing the correct treatment that if he opted for chemo or the seed implants that surgery if cancer returned would not be an option.  All treatments came with their own version of side effects as you well know.  He chose the DaVinci because of his age and the doctor's experience.

He is incontinence free at 9 weeks.  It took about 7-8 weeks to get there for him. He has been on Cialis for 3 weeks now.  Our return appointment is next week and he will be doing his first post op PSA next week also.  He is 100% cancer free at this time with no radiation needed.  As far as ED recovery, that is in the beginning stages but we are hopeful.  I honestly have no idea what to expect in the coming months or what the doctor will have him do other than the Cilias.

Good luck to you.  This forum is a great source of information and support.  I get more help from here than I do my husband's doctors. 

 

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 27 Nov 2019 at 16:20

Sorry to hear about your diagnosis Mick78. I was 55 when diagnosed but there are others here who were in their forties at diagnosis. 

Much will depend on how large and/or where any tumours are. Are they well within the prostate or near the edge?

If your only options are radiotherapy or surgery you will need to think carefully. Both are radical treatment and have significant side effects.

A part of me is surprised they are offering radiotherapy when you are so relatively young.

 

 

Ido4

User
Posted 27 Nov 2019 at 21:10

Hi Mick78,

Sorry to hear about the news.

I'm 44 and was diagnosed April and had RP on 1st October, almost 2 months post op.

Happy to update you with my recovery if you PM me.

Jeff

User
Posted 28 Nov 2019 at 01:16

There have been men on this forum diagnosed in their thirties or forties but not many, so you may not get many directly related replies. Nevertheless, many here have a good grasp on the general essentials. Assimilating what is provided in the 'Tool Kit' can be a good place to start'. 

Treatment can be determined by many things,including age, fitness for a procedure, position of cancer and personal choice where options are open to a patient. Having said that, overall most young men have surgery which gradually changes to a form of radiation as the patients are considerably older. Not all patients conform to this and there are other treatments too, mainly covered under the term 'Focal'. These are all primary treatments although sometimes given as salvage treatments if one fails. There are also other treatments such as Hormone Therapy and Chemo which may be given as part of a treatment plan early or later but you don't have to consider down the line treatments yet and hopefully there will not be a need in your case.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

Edited by member 28 Nov 2019 at 01:34  | Reason: Not specified

Barry
User
Posted 03 Dec 2019 at 10:01

Hi Toby, 

Likewise, sorry to hear about your diagnosis. I got speaking to a guy, through a different cancer charity, last week. He was 49 when he had the surgery to have his prostate removed. 

He said the key was to be mentally and physically fit prior to surgery. He spent the month beforehand in the gym, swimming etc.

He had slight incontinence for a few weeks after, but within a 4 months everything was back to normal with regards to incontinence and ED. He actually joked that "it's" awake in the morning before him.

Speaking to him has put me more at ease around the prostatectomy. 

I am actually meeting with the surgical consultant this afternoon, so will know more and make my decision on treatment type, this week.

I'll keep you posted.

Thanks and good luck.

User
Posted 03 Dec 2019 at 12:27

Thanks ulsterman for that open reply.

Given my age, I do think surgery is the best option. I am meeting with the surgeon in a few hours so hopefully will have more questions answered.

I was diagnosed 4 weeks ago and have being trying to get as much info as possible, mainly from men around my age.

I am from, and living in the republic of Ireland but this site was recommend as the forums are excellent and with a much larger population, I was more likely to get the age profile I was looking for (which I have).

Really hope all goes well for you when you meet your lung consultant.

Take care and all the best.

Mick.

User
Posted 06 Dec 2019 at 08:04

Mick,

I would suggest you contact the one to one support at Prostate cancer uk and speak to someone in a similar situation,it has to be better than just a ‘typed’ conversation,you can ask questions of the volunteer and get a personal experience.I’m a volunteer ,but probably not matched to you age wise,I’m sure you would find this service of benefit,good luck(I’m sure all will be fine)

Ian

 

User
Posted 06 Dec 2019 at 23:39

I am 62, surgery 5 weeks ago...recovering well. 

Question I should have asked ....how quickly do I need to take action?

Go forward at a pace that is best for you 

Best of luck

nb This site is excellent 

 

User
Posted 07 Dec 2019 at 08:42

Hi Ian,

Thanks for that message. I got put in touch with a volunteer by the Irish cancer society, who was 49 (youngest on their books) when he had the surgery.

Chatting to him has put my mind at ease, somewhat as a definitely have youth and fitness on my side, which he said helped him enormously and he now is back to almost where he was, in every respect, prior to surgery.

Thanks again, take care.

User
Posted 07 Dec 2019 at 09:35

My husband was diagnosed at 53 in 2016.

He has to decide on a second treatment and met with a surgeon last week as part of the decision process.

If he does have an RP we would want a NeuroSafe procedure where they remove the prostate via a nerve sparing procedure initially and then get the prostate biopsied immediately as part of the procedure.

This allows 100% certainty that the G7 diagnosis was  correct ( was it a 3+4 or a 4+3 Gleason 7?)

This also allows confirmation of negative margins during the surgery and the surgeon can then decide with full facts that it is safe to leave nerve bundles

 

This would be important to us as avoiding an over treatment whereby unnecessary side effects are experienced re erectile function and avoiding an under treatment when men have nerves left but find out about a positive margin or a higher grade of Gleason and therefore have been under treated with regards to cancer control.

So a Neurosafe RP would be on our shopping list if we went that route.

We are leaning to a second focal treatment however. 

Good luck. Hard decision when you are young. My husband was diagnosed initially with G6 so we made our decision from a low risk non aggressive diagnosis. His new diagnosis is G7 (3+4) so higher risk but still low enough risk for focal to be offered.

Clare

 

User
Posted 07 Dec 2019 at 09:42

Hi clare,

Thanks for your input.

My G is a 3+4. Being as young as I am, I would like the problem removed so I dont have to think / worry about it for the next 40 years (hopefully). The surgery is nerve sparing but with anything like this, there are never 100% guarantees. 

Hope you and your husband are doing well.

All the best....

 

User
Posted 08 Dec 2019 at 20:40

Delighted for you Jeff, great news!!!

I'll keep you posted...

User
Posted 10 Dec 2019 at 17:03

Thanks chalkmate, 

That was I brilliant piece on your journey and was quite inspiring to read, with you positive outlook and attitude.

I called the surgeon yesterday and asked for his next available slot. Like yourself, I've made my decision and now want to get on with it.

I shall keep you all updated and in the meantime, will be hitting the gym!!

Dont have weight to drop (5' 8" and 11st) but want to just be in the best physical and mental condition prior to surgery...

Here is to  a good Christmas. 

Talk to you in the new year!!

User
Posted 10 Dec 2019 at 21:36

Hi Mick

have a read of my posts I will be post op 7 weeks on Friday I had robotic surgery, it has all gone very well I see my surgeon on the 17th. As I have said in my post it’s all been a bit text book.

Dave

User
Posted 11 Dec 2019 at 10:32

Hi Mick,

I believe being fit helps with everything, I go to the gym and do a couple o spins a week, they have a gym where I am based also I ride a bike but not done anything for 8 weeks other than walking the dog he loves it,

speak wood Dave

User
Posted 12 Dec 2019 at 16:53

I was disgnosed at 48. I'm still on watchful waiting 10yrs on. Routine psa/scans/biopsy programme. Living with it took some time to adjust to. I'm told radical prostectomy would be the treatment of choice. Impotence following surgery is a major worry. Other men I know of who have had treatment of all types end up impotent. No exceptions. 

Get the best advice and be aware of the possibilities statistically too. Don't feel pressurised to make a rapid decision. All the best.

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

If life gives you lemons , then make lemonade

User
Posted 22 Feb 2020 at 21:53

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

ulsterman

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 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 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 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

Show Most Thanked Posts
User
Posted 27 Nov 2019 at 12:59
Hi Mick sorry you are here, seem to be getting more and more young members.

It would really help if you updated your profile with all your info regarding staging and G score.

I note you say you are still.hoping for kids, really important to get some sperm frozen before any radical treatment.

User
Posted 27 Nov 2019 at 15:48

Thanks francij1,

My G score was 7.

I have already made deposits to the bank!! It was the first thing I did.

My father has been through this and come out the other side absolutely fine and there are lots of people I can talk to, just none my age/at this stage of life!!

User
Posted 27 Nov 2019 at 16:20

Sorry to hear about your diagnosis Mick78. I was 55 when diagnosed but there are others here who were in their forties at diagnosis. 

Much will depend on how large and/or where any tumours are. Are they well within the prostate or near the edge?

If your only options are radiotherapy or surgery you will need to think carefully. Both are radical treatment and have significant side effects.

A part of me is surprised they are offering radiotherapy when you are so relatively young.

 

 

Ido4

User
Posted 27 Nov 2019 at 16:27

Thanks ido4,

It is all currently contained within the prostate. At my initial diagnosis, I was being recommended toward surgery but was told to talk to both different treatment specialists. I am leaning toward surgery myself but haven't 100% decided. I will before Christmas and start after the holidays, but want to talk to as many guys my age regarding their experiences, before I go into it.

User
Posted 27 Nov 2019 at 17:59
Have you met with an oncologist yet? Did you discuss brachytherapy, cryotherapy, or HIFU? Do you have the disposable income to be able to travel abroad for focal laser ablation?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Nov 2019 at 21:10

Hi Mick78,

Sorry to hear about the news.

I'm 44 and was diagnosed April and had RP on 1st October, almost 2 months post op.

Happy to update you with my recovery if you PM me.

Jeff

User
Posted 27 Nov 2019 at 21:15

Hi Jeff, 

Tried to PM you there, but I cant as I only joined the group today and apparently you have to have participated in more conversations to enable PM's.

Will PM as soon as I can.

Thanks.

User
Posted 27 Nov 2019 at 21:23

Okay Mick.

There is lots of information on this forum, please read AlastairD post which details the operation route.

Ask lots of questions because you will get the best answers from here.

Catch you soon.

J

User
Posted 28 Nov 2019 at 01:16

There have been men on this forum diagnosed in their thirties or forties but not many, so you may not get many directly related replies. Nevertheless, many here have a good grasp on the general essentials. Assimilating what is provided in the 'Tool Kit' can be a good place to start'. 

Treatment can be determined by many things,including age, fitness for a procedure, position of cancer and personal choice where options are open to a patient. Having said that, overall most young men have surgery which gradually changes to a form of radiation as the patients are considerably older. Not all patients conform to this and there are other treatments too, mainly covered under the term 'Focal'. These are all primary treatments although sometimes given as salvage treatments if one fails. There are also other treatments such as Hormone Therapy and Chemo which may be given as part of a treatment plan early or later but you don't have to consider down the line treatments yet and hopefully there will not be a need in your case.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

Edited by member 28 Nov 2019 at 01:34  | Reason: Not specified

Barry
User
Posted 03 Dec 2019 at 09:16

Hi Mick,

Literally just signed up because I saw your thread. I'm 47.

I was diagnosed in Sept 2017 but then only had a Gleason score of 6, so was put on active surveillance - and my memory of events was that the Doctor pretty much told me that would be that for a good few years.

Well, it wasn't so I'm now a Gleason 7 and having spoken to several Consultants, Lead Nurse practitioners, anyone I could, they all advised RP because of my age. Younger seems better for recovery. Alternative options might then still need RP but by then I would be 10+ years older.

London hospitals are not generally doing brachytherapy in younger patients (secondary risks), radiotherapy is also  considered a risk for secondary cancers (one of the consultants I spoke to was a mate who deals with the secondary effects), again a heightened issue by being younger. Proton therapy  I was told was actually an old method, popularised in recent times by American health system as it is highly profitable (my Uncle went to Austria to have it done privately despite being quite old). HIFU was described as 'frontier stuff', with not enough data to prove its efficacy.

Which brought be back round to radical prostatectomy, which is booked for Jan 2nd. The main, well the only appeal of it is, that it should remove all the cancer and I will then be cancer free (all my cores are contained in one side of the gland), rather than waiting to see if it comes back or if I am going to get secondary cancer as a result of alternative treatment. Doesn't mean I'm not cr*pping myself about the incontinence and ED risks!

I've a daughter with Rett Syndrome a complex neurological disorder - she's a 1 in 12,000 - so whatever option I was given along with various stats like 2 in 10, 1 in 8 - I was mindful of the fact that someone has to be the '1'. 

Caveat - this is simply my personal view and the decision I came to. It's not often I think of myself as 'younger' but would welcome chatting with others in the same situation.

User
Posted 03 Dec 2019 at 09:52

At 53 I consider myself young also. I was diagnosed less than a week ago so I'm doing all the research I can on various options, also as I don't yet know the full extent of what I'm facing other than a Gleason 7, I'm not even sure what options will be open for me, so very much in limbo until I'm able to have all the tests, MRI etc. I have been looking at the hifu option because like yourself the thought of in incontinence and ED at 53 when I'm otherwise fit are not something I want. I know a certain TV star (deal or no deal) had hifu which seems to have worked for him. Yes it is all new in comparison to traditional methods, but if it's an option for you it seems to be worth trying, in the event of it not being successful, then there is the more severe option of having prostate removed. It's all personal choices and a hard decision for us to make, much sooner not be in this place at 53, but there you go

 

Good luck to you all, and hope everything goes well.👍

User
Posted 03 Dec 2019 at 10:01

Hi Toby, 

Likewise, sorry to hear about your diagnosis. I got speaking to a guy, through a different cancer charity, last week. He was 49 when he had the surgery to have his prostate removed. 

He said the key was to be mentally and physically fit prior to surgery. He spent the month beforehand in the gym, swimming etc.

He had slight incontinence for a few weeks after, but within a 4 months everything was back to normal with regards to incontinence and ED. He actually joked that "it's" awake in the morning before him.

Speaking to him has put me more at ease around the prostatectomy. 

I am actually meeting with the surgical consultant this afternoon, so will know more and make my decision on treatment type, this week.

I'll keep you posted.

Thanks and good luck.

User
Posted 03 Dec 2019 at 12:14

Hi Mick

I was diagnosed 3 years ago at the age of 46.  I opted for surgery.  Even the oncologist whom I met said surgery was my best bet based on my young age and my initial diagnosis of T3a and Gleason 7.  After surgery, I was upgraded to T3b and Gleason 9, so I'm glad i did have it removed.  No nerve sparing which means i have no hope ever of a natural erection.  The side effects should not be under-estimated especially as we may have a very long time to live with them.  Incontinence wasn't a big issue.  I've also needed follow up radiotherapy and hormone therapy and am meeting a lung specialist today to discuss possible spread to my lungs.  I'm hoping it isn't that.

The thing is though, you have to make a decision and then accept that decision and live without regrets.  That's what someone on this forum told me three years ago and it was a great piece of advice.

I notice on your profile that you're from or in the Republic of Ireland.  Are you living there or in the UK as most people will refer to the NHS in their answers which may or may not apply to you.  I'm in he south of England but come from Belfast originally.

Ulsterman  

User
Posted 03 Dec 2019 at 12:27

Thanks ulsterman for that open reply.

Given my age, I do think surgery is the best option. I am meeting with the surgeon in a few hours so hopefully will have more questions answered.

I was diagnosed 4 weeks ago and have being trying to get as much info as possible, mainly from men around my age.

I am from, and living in the republic of Ireland but this site was recommend as the forums are excellent and with a much larger population, I was more likely to get the age profile I was looking for (which I have).

Really hope all goes well for you when you meet your lung consultant.

Take care and all the best.

Mick.

User
Posted 03 Dec 2019 at 19:41

Given the all clear from the lung specialist.😀

Ulsterman

User
Posted 03 Dec 2019 at 19:50
Great news Walter, must be a load off your mind.
User
Posted 03 Dec 2019 at 20:48

Brilliant, that's great news. 

Think I'm going to go with the robot assisted surgery having spoken to the consultant earlier!!

I'll keep you posted.

User
Posted 03 Dec 2019 at 20:53

Did you talk to him about nerve sparing?

User
Posted 03 Dec 2019 at 20:56

I did indeed. They can never give 100% guarantee though. Given my age, fitness and current lifestyle, he was pretty confident that I could get back to a reasonably normal standard of living, in all aspects.

User
Posted 03 Dec 2019 at 21:03

That's great news mate, really pleased for you...stay strong everyone👊👊

User
Posted 06 Dec 2019 at 08:04

Mick,

I would suggest you contact the one to one support at Prostate cancer uk and speak to someone in a similar situation,it has to be better than just a ‘typed’ conversation,you can ask questions of the volunteer and get a personal experience.I’m a volunteer ,but probably not matched to you age wise,I’m sure you would find this service of benefit,good luck(I’m sure all will be fine)

Ian

 

User
Posted 06 Dec 2019 at 23:39

I am 62, surgery 5 weeks ago...recovering well. 

Question I should have asked ....how quickly do I need to take action?

Go forward at a pace that is best for you 

Best of luck

nb This site is excellent 

 

User
Posted 07 Dec 2019 at 08:42

Hi Ian,

Thanks for that message. I got put in touch with a volunteer by the Irish cancer society, who was 49 (youngest on their books) when he had the surgery.

Chatting to him has put my mind at ease, somewhat as a definitely have youth and fitness on my side, which he said helped him enormously and he now is back to almost where he was, in every respect, prior to surgery.

Thanks again, take care.

User
Posted 07 Dec 2019 at 08:45

Thanks seldomseen, 

I have asked that question already.

It looks like I will have the surgery in late January/early February.

I will keep you all posted.

And yes, this site is brilliant. 

User
Posted 07 Dec 2019 at 09:35

My husband was diagnosed at 53 in 2016.

He has to decide on a second treatment and met with a surgeon last week as part of the decision process.

If he does have an RP we would want a NeuroSafe procedure where they remove the prostate via a nerve sparing procedure initially and then get the prostate biopsied immediately as part of the procedure.

This allows 100% certainty that the G7 diagnosis was  correct ( was it a 3+4 or a 4+3 Gleason 7?)

This also allows confirmation of negative margins during the surgery and the surgeon can then decide with full facts that it is safe to leave nerve bundles

 

This would be important to us as avoiding an over treatment whereby unnecessary side effects are experienced re erectile function and avoiding an under treatment when men have nerves left but find out about a positive margin or a higher grade of Gleason and therefore have been under treated with regards to cancer control.

So a Neurosafe RP would be on our shopping list if we went that route.

We are leaning to a second focal treatment however. 

Good luck. Hard decision when you are young. My husband was diagnosed initially with G6 so we made our decision from a low risk non aggressive diagnosis. His new diagnosis is G7 (3+4) so higher risk but still low enough risk for focal to be offered.

Clare

 

User
Posted 07 Dec 2019 at 09:42

Hi clare,

Thanks for your input.

My G is a 3+4. Being as young as I am, I would like the problem removed so I dont have to think / worry about it for the next 40 years (hopefully). The surgery is nerve sparing but with anything like this, there are never 100% guarantees. 

Hope you and your husband are doing well.

All the best....

 

User
Posted 07 Dec 2019 at 10:23

Thanks Mick we are fine having had 3 years knowing he has PCa has given plenty of time to get used to the situation, the need for PSA to be monitored and understand it’s a very individual disease so no common pathway for all to follow.

G7 ( 3+4) is the same as my husband. Absolutely understand your thought process, it makes complete sense.

It would be great to be kept up to date on your journey. I have found the complete threads that people have taken the time to keep updated invaluable due to the variety of options that continue to be available to my husband.

Also we have learnt much from this community that is missing from even something as comprehensive as the ‘toolkit’.

we too will have some procedure happening in Jan/Feb just not 100% certain yet which path to take.

User
Posted 08 Dec 2019 at 20:32

Mick,

I hope you are keeping well.

Just wanted to say i've just had my first psa test result after RP on the 1st October.......<0.1 undetectable! Feeling so relieved right now.

Good luck with your operation and hope your results are the same as mine.

Jeff

User
Posted 08 Dec 2019 at 20:40

Delighted for you Jeff, great news!!!

I'll keep you posted...

User
Posted 10 Dec 2019 at 13:19

Hi Mick.

I'll quickly summarise my story. I was diagnosed at 48 with G3+3 and placed on Active Surveillance. 12 months on and following a further MRI and Biopsy, I was advised to consider RARP. Long story short, I opted for that within 48 hrs, met the surgeon about a week later and had the procedure about 4 weeks thereafter in September. Ultimately, the age factor was compelling in my consideration of what treatment choice I should make.

In that 4 weeks before the operation, I really didn't stop to dwell on it. It was a factory line that I couldn't get off so I just kept busy. Kept going to the gym, kept socialising and told very few people. I was pretty focussed - Gloves on, gumshield in. We're doing this. Oh, ....I also had as much sex as I could!!

On they day itself, I was in theatre within an hour of walking through the hospital door (1st surgical slot of the day). When I woke up, there was no pain, though I was pretty groggy for 36 hours. I had family support and for that I am very grateful.

I had a cathetar in for about a week. Thats not great, but one week of your life...no problem. I even managed to do what I was told was impossible....I filled my night time bag ha ha!! For me, continence was good thereafter. I never had pain. I took painkillers for a week due to fear of pain and when the cathetar was removed, I was advised to stop taking them to see whether I encountered any. I didn't.

However - the painkillers do bring fairly pretty severe constipation and given the nature of the operation, that's not great but I had a nurse who kept banging on about eating stewed fruit 3 times a day and to keep hydrated - which I did and I was just about OK. Its not terrible, but treat it VERY seriously.

For about the next 4 weeks, I pottered about and went walking. Then I started drinking again and began to really enjoy life as I wasn't yet back at work (I was signed off for 10 weeks). At about week 8 I started swimming and now I'm back in the gym and working out at about 70% effort.

I've had my follow up following surgery. I was upgraded from G3+3 to G3+4 and my PSA is now undetectable <0.03.

Which leaves ED. All medical staff tell me its early days. I'm following my rehab program and I'm taking large quantities of Sildenafyl. I can't pretend I'm not anxious, but the reality is that the data tends to suggest that this will take the best part of a year, possibly two. We'll see. But the reason I say this is because you have to be real with yourself. This isn't a broken arm. It is what it is.

If I win my ED battle, then I can assure you that there will have been NO regrets. Not once during this experience have I wished I'd taken a different course and I'm truly thankful for the early diagnosis. But that's my experience and it may or may not be close to yours. Whatever you decide, I wish you the best of luck.

..Twist.

User
Posted 10 Dec 2019 at 17:03

Thanks chalkmate, 

That was I brilliant piece on your journey and was quite inspiring to read, with you positive outlook and attitude.

I called the surgeon yesterday and asked for his next available slot. Like yourself, I've made my decision and now want to get on with it.

I shall keep you all updated and in the meantime, will be hitting the gym!!

Dont have weight to drop (5' 8" and 11st) but want to just be in the best physical and mental condition prior to surgery...

Here is to  a good Christmas. 

Talk to you in the new year!!

User
Posted 10 Dec 2019 at 21:36

Hi Mick

have a read of my posts I will be post op 7 weeks on Friday I had robotic surgery, it has all gone very well I see my surgeon on the 17th. As I have said in my post it’s all been a bit text book.

Dave

User
Posted 10 Dec 2019 at 21:48

Thanks Dave, 

Had a quick read there. Pretty remarkable stuff. I'm delighted for you. I can only hope for an outcome like that, but being only 41 and being very fit/healthy I'd be hoping for it.

Will keep you posted.

Cheers, and good luck on the 17th!!

User
Posted 11 Dec 2019 at 10:32

Hi Mick,

I believe being fit helps with everything, I go to the gym and do a couple o spins a week, they have a gym where I am based also I ride a bike but not done anything for 8 weeks other than walking the dog he loves it,

speak wood Dave

User
Posted 11 Dec 2019 at 20:48

My husband was diagnosed at 52 and we live in the US.  They don't recommend PSA tests in the US until 50.  My husband had slightly eleveated PSAs from the beginning of testing or right at the top of normal on follow ups.  For us we are the youngest when we see the doctor and feel very out of place.  I am certain you being even younger feel that way too.  My husband's Gleason score same as yours (3+4) after just 1 biopsy and he opted for the robotic nerve sparing surgery.  He had his surgery October 17th.  Doctor said it was textbook.

My husband is not athletic and a recovering alcoholic.  He was taking Zoloft for depression but he is working on getting off that and switching to Wellbutrin (FYI Zoloft known issue for ED so it is precautionary on his part).  He is healthy otherwise though.  The doctor informed us when choosing the correct treatment that if he opted for chemo or the seed implants that surgery if cancer returned would not be an option.  All treatments came with their own version of side effects as you well know.  He chose the DaVinci because of his age and the doctor's experience.

He is incontinence free at 9 weeks.  It took about 7-8 weeks to get there for him. He has been on Cialis for 3 weeks now.  Our return appointment is next week and he will be doing his first post op PSA next week also.  He is 100% cancer free at this time with no radiation needed.  As far as ED recovery, that is in the beginning stages but we are hopeful.  I honestly have no idea what to expect in the coming months or what the doctor will have him do other than the Cilias.

Good luck to you.  This forum is a great source of information and support.  I get more help from here than I do my husband's doctors. 

 

User
Posted 11 Dec 2019 at 20:56

Thanks adora,

This forum is superb, I cant say have valuable I've found all the posts on here.

Glad to hear your husband, and you, are doing well. Hope all goes well for you both.

Take care and look back in, in a few weeks and I'll keep you updated.

User
Posted 11 Dec 2019 at 23:11

Adora, it is great that his continence is recovered so soon but they can't possibly know that he is 100% cancer free so soon. His first PSA test will be a good marker but he will need 5 or 10 years of undetectable PSA before he can confidently say he is in remission. My husband was 50 at dx, had the op but it recurred 2 years later. My dad was in remission for 13 years but it still came back.

Edited by member 11 Dec 2019 at 23:11  | Reason: Not specified

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

User
Posted 12 Dec 2019 at 16:53

I was disgnosed at 48. I'm still on watchful waiting 10yrs on. Routine psa/scans/biopsy programme. Living with it took some time to adjust to. I'm told radical prostectomy would be the treatment of choice. Impotence following surgery is a major worry. Other men I know of who have had treatment of all types end up impotent. No exceptions. 

Get the best advice and be aware of the possibilities statistically too. Don't feel pressurised to make a rapid decision. All the best.

User
Posted 06 Jan 2020 at 14:08

Hi Mick78. I've not been on this site for sometime but thought I'd share my experience. I'm 56 and 2 1/2 years post RP. I was offered radiotherapy also but chose to have the op. Continence returned quite quickly for me. ED is everlasting for me as I had non nerve sparing. Caverject is my cure for ED but I've heard others state it's not for them. It's difficult to come to a decision but once you've made it things start falling into place. It's been a rocky road but I'm still here and glad to be. PSA recently was less than 0.01. Good luck.

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

If life gives you lemons , then make lemonade

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! 

M

 

 

Mel

 
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