Recently diagnosed with PC

User

Posted 09 Nov 2020 at 22:38

Hi guys, I hope someone can help as I've just been recently diagnosed with Prostate Cancer on the 28.10.2020

Let me start by giving a short history,

I'm 47 yrs old usually fairly fit and well apart from a little Asthma.

Going back a few months I started getting symptoms of ED, I took the bold step to speak with my GP in mid September he suggested that I have a PSA test which came back at 2.6, he then said let's test again in 2 weeks so I did and results were 2.7 he then decided to refer me to the Urologist whom I saw on the 6th October where I had a DRE performed which the Urologist said a enlarged prostate and he said we would normally not perform a MRI but as you are young we will refer. MRI was performed on the 11th October with the results showing a PIRAD 5 lesion in the Apex. I was then referred for Transperineal Biopsy which I had on 22nd October, this unfortunately showed a localised (3+4) and also a (4+3) so Gleason 7. I was devastated and am still trying to come to terms with this, however my Consultant who gave me the diagnosis on the 28th of October said its favourable Intermediate Risk Prostate Cancer and recommended AS or Surgery. I'm confused as not sure what to do ... I have discussed with my Wife and we think Surgery is the best option. Please could anyone shed some more light on things.

I have another appointment with the Consultant a telephone consultation due to this Covid situation.

Many thanks

Zahid

User

Posted 09 Nov 2020 at 23:09

Hi Zahid and sorry you find yourself here.

The fact that they've offered you active surveillance means that you don't need to panic. They do not think it is hugely urgent. That's good. 😀 You've got time to make a well thought out decision.

Because you are young they will often push you towards surgery rather than radiotherapy. Two reasons for this are that you will likely recover well and in the very long term (15+ years) radiotherapy can cause other problems.

I was 50 at diagnosis and went to see both surgeon and oncologist. They both suggested surgery would be a better fit for me. (I wasn't offered active surveillance).

What kind of surgery are they offering? Robotic Assisted Radical Prostatectomy (RARP) or open?

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 09 Nov 2020 at 23:26

Hi Zahid,

Really sorry you find yourself here at your young age. As Alex says, you don't need to rush - you have time to do your own research and decide what's best for you.

I'm a little bit surprised you are being offered active surveillance with some 4+3 present.

One thing to consider now is if you need to do any sperm banking before you start treatment, in case you want to have any children after treatment.

User

Posted 10 Nov 2020 at 04:07

If I were you, at your age, I would go with active surveillance for as long as your clinicians think you can get away with it.

If you opt for any treatment now, your sex life will be severely disrupted. You could have quarterly PSA tests and another MRI in a year’s time, and take stock of the situation then.

I have a friend who has been on AS for five years, with regular monitoring, who is doing fine.

Best of luck.

Cheers, John.

User

Posted 10 Nov 2020 at 09:39

Hi Zahid,

Sorry you are here

I'm a bit older than you but had surgery earlier this year. If you click on my profile you will get an idea of the journey.

Its a stressful time but there is plenty of help around if you need it

Good luck

User

Posted 16 Nov 2020 at 14:12

Helpful and reassuring post from Audiman except the last bit "ED as the nurse explained in great detail with all of the options can easily be sorted!"

Let me tell you, ED is not easily sorted for all men; the nurse is being rather optimistic there. Post op, 90% of men can get an erection at 12 months either naturally or using medication or a vacuum pump. Without chemical or mechanical assistance, around 60% of men can get an erection. And 'getting an erection' is different to 'getting an erection sufficiently solid for penetration' for which the success rates falls to below 50%. Loss of ejaculate is a given. Loss of length and girth is a problem for the vast majority so even if the erection is solid enough for penetration, it may not be long enough for previously favourite positions.

About 10% of men never have an erection again.

Rates for men on the RT/HT path appear to be worse during HT and better afterwards.

ED can be overcome in some way for most men but it is important not to go into this with rose coloured glasses. It is certainly not 'easily sorted' for any but the very lucky few.

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

User

Posted 19 Dec 2020 at 09:19

Hi Zahid,

Really sorry to greet you here.

For me the “Putting things off” as I was busy with other things to look after myself may be why I am here, so read the forum posts and get an idea where you are on the “Bugger It... scale”? You may find that reassuring, but you will also find the treatment options seem to vary where you live, be aware of that.

A G7 I think needs treatment as my consultant said yesterday to me (mines a G7 (4+3)) but yours is a (3+4),yours less nasty bits than me and confined? (The important bit), there are many here who can offer clinical opinions I can’t, I am just a victim who is trying to get to grips with this myself.

You don’t have to agree with the doctors, but you do have to be realistic as most have spent years doing what the do, and also have their own motivations and NHS targets to meet. If you think AS is not correct get another opinion if you want; but you do need to speak to the specialist nurses first; as it seems they know more about outcomes than the surgeons. Importantly they know the patients they are supervising and can advise if this is usual practice for your hospital to do this for XX reasons.

They may simply be unable to cope at present and haven’t told you that. They may have “reasons” like the robots broke or they don’t have a certified consultant at the moment; or simply they that have a very efficient and fast screening programme to detect changes in PC and clinically gives you the best outcome.

Ask why they have said what they have said for your case, and if you don’t understand ask the question again until you do. You can then have confidence in the decision?

The reasoning may be your age and your PC is confined and not misbehaving, mine isn’t and is.

It sucks it REALLY does; information is your friend; uncertainty isn’t, the best of luck.

Buzzy

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User

Posted 09 Nov 2020 at 23:09

Hi Zahid and sorry you find yourself here.

The fact that they've offered you active surveillance means that you don't need to panic. They do not think it is hugely urgent. That's good. 😀 You've got time to make a well thought out decision.

I was 50 at diagnosis and went to see both surgeon and oncologist. They both suggested surgery would be a better fit for me. (I wasn't offered active surveillance).

What kind of surgery are they offering? Robotic Assisted Radical Prostatectomy (RARP) or open?

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 09 Nov 2020 at 23:26

Hi Zahid,

Really sorry you find yourself here at your young age. As Alex says, you don't need to rush - you have time to do your own research and decide what's best for you.

I'm a little bit surprised you are being offered active surveillance with some 4+3 present.

One thing to consider now is if you need to do any sperm banking before you start treatment, in case you want to have any children after treatment.

User

Posted 10 Nov 2020 at 04:07

If I were you, at your age, I would go with active surveillance for as long as your clinicians think you can get away with it.

If you opt for any treatment now, your sex life will be severely disrupted. You could have quarterly PSA tests and another MRI in a year’s time, and take stock of the situation then.

I have a friend who has been on AS for five years, with regular monitoring, who is doing fine.

Best of luck.

Cheers, John.

User

Posted 10 Nov 2020 at 09:12

Hi Alex, many thanks for your reply,

The initial chat the consultant urologist had with me was he said he would recommend AS but Surgery could also be an option that would be robotic.

For my symptoms I already have a degree of ED so wouldn't it be better psychologically if the tumor was out.

I think the main thing is mentally being able to cope, at the moment I'm struggling.

Zahid

User

Posted 10 Nov 2020 at 09:19

Hi Andy,

I have researched a little I think he said AS as my tumor is low volume and localised, but I understand 4+3 is an intermediate risk Xancer , this is why I suggested to him that I would prefer Surgery at least it would be out and I could learn to live with the symptoms post surgery and god knows what my helath would be in the next 5-10 yrs.

I have 3 lovely kids already and tbh I think that's it for me 🙂.

For my peace of mind regarding the cancer I would prefer it out. I asked him would this cancer kill me ..he said NO you would die of other things rather than this cancer. Unfortunately him one of those people that are of a nervous disposition anyway 🙄.

Zahid

User

Posted 10 Nov 2020 at 09:22

Hi Bollinge,

I already have some reasonably degree of ED so tbh I don't think that would be an issue pkus I believe there are techniques or procedures that can help post surgery with ED.

I have surgery on my mind but am still confused a little.

Thanks for your

Advice

Zahid

User

Posted 10 Nov 2020 at 09:39

Hi Zahid,

Sorry you are here

I'm a bit older than you but had surgery earlier this year. If you click on my profile you will get an idea of the journey.

Its a stressful time but there is plenty of help around if you need it

Good luck

User

Posted 10 Nov 2020 at 10:26

Hi Mike,

Thanks for your reply,

Fantastic new about your success... I'm hoping for something similar, am I being silly suggesting Surgery.

Regards

Zahid

User

Posted 10 Nov 2020 at 11:47

I think people like Alex_Cycles have also had successful surgeries and I'm sure there many others. But a lot comes down to the skill/reputation of the surgeon, where the tumor is etc

I was a strong advocate of the AS route (and still am) but for me I got to the point where I knew it was progressing and it felt like I needed to choose between kicking the can down the road and perhaps at some point going down the HT/RT route or having surgery and hopefully not needing any further treatment. I'm happy with my choices but it was a scary decision.

User

Posted 10 Nov 2020 at 17:44

Originally Posted by: Online Community Member

I think people like Alex_Cycles have also had successful surgeries and I'm sure there many others. But a lot comes down to the skill/reputation of the surgeon, where the tumor is etc

I had my op on June 12th this year. It feels very successful right now, but ask me in 5 years 😜

I also had a scary decision back in April when my surgery was "delayed indefinitely" by the first COVID peak. I was offered AS or HT (bicalutamide) as a temporary way of stopping the cancer progressing while we wait to see when surgery might be possible. The idea of bicalutamide was very unappealing to me, so I opted for AS as I thought it likely that the delay would only be a couple of months. It turned out I was right, although if I eventually do get a recurrence I will never know if it was caused by that decision. (The other guy on the ward who was RARPed on the same day as me had the same choice and made the same decision.)

Several family members got very twitchy in April and May and in that time I handled it my way, by cycling 1500 miles and trusting God had led me to the right decision. I was already in good shape, but this got me in tip-top condition, which they say helps you to recover well from surgery.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 14 Nov 2020 at 08:53

Hi, I am older than you (66 at diagnosis), and was diagnosed over Christmas last year, with confirmation of biopsy results in January 2019. My Gleeson was identical to yours. I was advised that my cancer was still fully encapsulated within the prostate. Had a whole body bone scan. My PSA reached 5.5. The oncology/urology team at the Royal Berks were fairly relaxed, so we got a couple of holidays in before treatment in July 2019. I looked at the options, and chose Brachytherapy. This was on the basis that there was no spread, and Brachytherapy is minimally invasive, and has the least side effects. I was in and out of hospital in 24 hours and back to the gym in two weeks. Side effects kicked in after about 4 weeks, but were manageable, using incontinence pads if going out, and taking imodium if on a long journey. Trust me you will need both. I was over the treatment quickly, and so much so that we travelled to Rajasthan flying into Delhi and travelling all around by road and rail, trekking and camel safari in November. After 12 months my PSA is 0.52, and my consults are by telephone every 6 months. It took 8-9 months for side effects to really disappear completely, and in general, "the plumbing" all works normally.

If your oncologist/urologist team think you are a good candidate, do look seriously at this highly effective treatment.

Good luck with whatever you choose but do your research first.

Chris

User

Posted 14 Nov 2020 at 09:57

Hi Zahid,

After a lot of deliberation I chose surgery (RALP)- you can read my profile for my particular journey.

My initial stats were 50 at diagnosis, a PSA of 4.6, a Gleason score of 3+4 (later upgraded to 4+3), and a staging of T1b (later upgraded to T2c). 7 years post surgery my PSA remains undetectable although I do have some continuing stricture problems.

Your journey if you chose surgery may be the same, better (hopefully) or worse - there are so many variables as well as touch luck. Top of the list for me though would still be a very experienced surgeon at a "centre of excellence".

Flexi

Edited by member 14 Nov 2020 at 09:59 | Reason: Not specified

User

Posted 16 Nov 2020 at 12:27

Hi Zahid,

my experience is simular except I never had any symtoms and to this stay still don't. I was having a well mans check and I asked for the PSA test to be included. PSA cam back at 4.5 I was referred to urology within days I had an appointment, then MRI, then 10 sample Transrectal biopsie's, Gleeson 6 and it was explained to me that many men like myself are walking around with this and have no idea. He asked if the fact that cancer had been detected which was non agressive how did I feel about AS?, my answer was that if they were as he said keeping an eye on me and at that stage there wasn't an issue. I am now 5 years on and since then I have had a further MRI and two transectal 20 sample biopies and now at gleeson grade 7 the recomendation is to consider treatment. the option is full removal or radiotherapy. I have seen another treatment HIFU which they have dismissed but I'm making enquiries.

Nothing is easy for sure and all have side effects and at present I'm struggling to make a clear choice. Logic tells me to have the surgery then its gone, however I have a colleague who is a chiropracter and he said he has quite a few clients that have all done really well on radiotherapy which at least still means you have a prostate.

I guess that like me the cancer is within the prostate and therefore isn't too much of a concern at this stage. ED as the nurse explained in great detail with all of the options can easily be sorted!

Good luck

User

Posted 16 Nov 2020 at 14:12

Helpful and reassuring post from Audiman except the last bit "ED as the nurse explained in great detail with all of the options can easily be sorted!"

About 10% of men never have an erection again.

Rates for men on the RT/HT path appear to be worse during HT and better afterwards.

ED can be overcome in some way for most men but it is important not to go into this with rose coloured glasses. It is certainly not 'easily sorted' for any but the very lucky few.

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

User

Posted 18 Nov 2020 at 09:19

Many thanks for those figure which is interesting and after reading it clearly makes me think that ED was played down,

Waiting now to see an oncologist to discuss the RT option. I have a friend who is a chiropractor who was telling me that he has quite a few clients that have all had this treatment and so far are fine. Its feels like Russian Roulette ;-)

thanks again

User

Posted 21 Nov 2020 at 20:37

Hi Zahid

Sorry to hear about to the diagnosis. Please check my profile and links to my journey with Retzius Sparing Robot Assisted Radical Prostatectomy + Neurosafe.

It’s one of the toughest decisions I’ve ever made but like you my view at 52 is get it out sooner rather than later as even though it’s intermediate grade the cells can still potentially migrate. Also be cautious as in ~40% cases post op histology upgrade the tumour type so biopsy and mpMRI might not tell the full story.

Key things are to find a high volume surgeon with good track record. I found mine a little by chance and feel quite fortunate given my outcome.

Please don’t hesitate to shout if you have any more questions etc

Simon

Edited by member 22 Nov 2020 at 08:26 | Reason: Not specified

User

Posted 22 Nov 2020 at 16:02

Hi Zahid,

Sorry to learn of your diagnosis.

I found myself in a similar situation to yourself and AS wasn't recommended by my surgeon. This was due to my age and gleason score. However, surgery was my decision, once I learned my biopsy results, prior to seeing the surgeon.

As techguy stated, biopsy results can be upgraded after surgery.

I have made a full recovery from surgery - and my profile gives a bit more detail.

Best of luck to you for the future.

Neil

User

Posted 18 Dec 2020 at 00:57

Hi Zahid

Not in a position too dissimilar to you, other than I was PIRAD 3 which meant the only way to be sure I had cancer was to have biopsies. I have just turned 49.

I was offered radiotherapy though as well as AS and surgery - I opted for SABR radiotherapy which was an intense course of treatment over 5 days. I didn’t need hormone therapy and I had a SpaceOAR inserted to protect my rectum.

I don’t hear many talking about this, so guess it’s relatively new - but apart from a few minor side affects, I feel ok and relatively optimistic that it will be cured. I couldn’t do AS myself - would just worry too much.

Hope it works out for you 👍

Jinathan

User

Posted 19 Dec 2020 at 09:19

Hi Zahid,

Really sorry to greet you here.

Ask why they have said what they have said for your case, and if you don’t understand ask the question again until you do. You can then have confidence in the decision?

The reasoning may be your age and your PC is confined and not misbehaving, mine isn’t and is.

It sucks it REALLY does; information is your friend; uncertainty isn’t, the best of luck.

Buzzy

User

Posted 31 Dec 2020 at 16:44

I'm not an expert on this subject, all I know is that 7 years ago I was diagnosed with prostate cancer which was contained in my prostate. To me the only option is to get it out of your body which I did and have no regrets.

A friend who's cancer had spread outside of their prostate spent a long time having treatment and possibly will for the rest of their life.

Another friend was diagnosed 10 - 15 years ago who did not have his prostate removed, he had to take drugs which in the end were too much for his body to handle and died last year albeit at the age of 85.

User

Posted 31 Dec 2020 at 17:27

Hi Zahid,

I was diagnosed back in Feb 20 with Prostate Cancer G7 3+4 and i wasn't offered AS but I was offered 3 options surgery, External Beam Radiotherapy or Brachytherapy. I did all the research I could and like Chris I opted for Brachytherapy which I received on 22nd July. I had some side effects and still do but recently I have only been getting up once at night if at all to go to the toilet, I have erections but i do not ejaculate although i still do have the sensation of ejaculation which is ok for me. Brachytherapy was the treatment that I selected and 5 months on I am satisfied that it was the right choice, I have an active life and the treatment has affected my life at all. All the best with your decision making.

David

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