Totally new to all of this

User

Posted 14 Oct 2021 at 16:09

Hello my name is Dave and I have recently within the last couple of months been diagnosed with Prostate cancer, and whilst I appreciate it is not at the moment life-threatening I am terrified of my future prospects.

Three months ago I decided to have a medical MOT so to speak, to check out that everything was okay and in order, I never expected the result to come back that there was something wrong with me. As part of the MOT, I had blood taken and a PSA test carried out.

The result came back as I had a PSA of 10.7 which I was told equated to me having a 50% of prostate cancer, all of which I was told over the phone. to say my world fell apart is an understatement.

I was placed on an 8-week cancer fast track testing program and after several unpleasant tests and procedures have come out with the following diagnosis:

PSA 10.7, DRE shows nodule on the left side, Gleason score of 3+4=7, they believe it is contained within the prostate gland.

I had a biopsy where 12 samples were taken under a local, with the following results: the lefthand side 6 biopsies showed that only 3 of 6 were cancerous, with a score of 3+3 and the right-hand 6 biopsies showed that 4 out of 6 were cancerous with a score of 3+4 =7.

The surgeon said I was lucky in so much that I had every option available to me, [Active Awareness, brachytherapy, radiotherapy, hormone treatment, and radical prostatectomy].

I was given several leaflets and told to go away and choose one.

This prompted me to do research contacting the Prostate Cancer UK helpline and finally looking for a second opinion and paying to go private, as I did not like the symptoms and quality of life outcome, suggested by the NHS consultant which was to have a radical prostatectomy carried out.

As part of my research, I found FOCAL THERAPY what appeared to give a much better quality of life and fewer symptoms.

I now have seen the private consultant who was amazing, he tended to agree with me that the best options for me would be:

1) Focal Therapy - if I qualified;

2) Nerve-sparing prostatectomy

3) something to do with L-lynx

My question is that, is this the best course of action, and can I genuinely have a semi-normal life after treatment, I'm scared to have surgery as feel I am still too young to lose function and quality of life down there.

Thank you for reading and any support is truly appreciated.

User

Posted 15 Oct 2021 at 07:31

If it's any comfort on the "quality of life" thing, Dave, I was diagnosed in 2018 aged 55, had hormone therapy and radiotherapy, and now I can honestly say I've never been happier: being diagnosed with cancer put everything I used to get stressed about into perspective and now they don't bother me one bit. There is light at the end of the tunnel, and you will get through this.

Best wishes,

Chris

User

Posted 15 Oct 2021 at 08:05

Dave, I too want to reassure you that once you've come through the initial stages of treatment for PCa, life can be as good or even better than before.

I was diagnosed in 2008, entered the dark tunnel of dread, underwent a prostatectomy and radiotherapy which led to permanent ED and an overactive bladder (OAB) including urinary incontinence (UI). On top of that I have recently been diagnosed with advanced PCa, so not much of a life, you'd think.

Yet, like Cheshire Chris, I have never been happier. The key is you realise there is no point in moping about the negatives, instead you focus on just how lucky you are still to have a life and that there is so much more to it than you ever realised. Chances are you will still be able to do many of the things you enjoy most in life, and will soon adjust to living without those few things you once prized as so vital to your happiness.

Tbf in my case it does help that I have no physical symptoms whatsoever (other than OAB/UI and ED) and a very supportive wife with whom I can share my problems. I keep fit by walking 5 brisk miles a day and find plenty of diversions to keep me happy.

So, 13 years after DX, to hell with PCa, life remains as good as it's ever been.

Edited by member 15 Oct 2021 at 08:16 | Reason: Typos!

User

Posted 14 Oct 2021 at 17:04

Hi Dave, welcome. This isn't quite as scary a disease as it seems at first. It is slow growing and if you had not had the MOT you would have known nothing about it for probably another ten years, having said that it would have probably then been incurable, but your life could have probably been managed with treatment for another ten years or so. As a general rule 98% of men are still alive five years after being diagnosed with prostate cancer; whereas with pancreatic cancer it is about 5%.

It is certainly good that you have caught it quite early because it does give you lots of choices. I think it is a little too serious for Active Surveillance. If it had been Gleason 6 and only one or two cores I would say Active Surveillance would be a good idea, and indeed you could argue that if you just checked your PSA every six months with perhaps an MRI once a year, it may turn out to be the sort of cancer which just doesn't develop and it could be years before any real treatment is needed.

With focal treatment, HIFU is the only treatment I have heard of in this country, laser and cryo are also possible but I think only one or two people on this group have had those. HIFU could be a good idea, it is rarely offered on the NHS, but some people manage to get it. I think with over half your cores positive the tumour may be too big for focal treatment, but I have heard the phrase whole prostate HIFU so maybe that would be suitable.

I was diagnosed and treated at 54, I had Brachy, HT and EBRT. I am now three years down the line too early to say if I am cured, and it is only one year since I finished HT. I would say my quality of life is pretty similar to what it was before the treatment. ED is a bit of a problem, things sort of work but I can't say I can rely on it. I need to do a bit of experimenting with Viagra to find what works best.

A lot of options were discussed on this thread:

https://community.prostatecanceruk.org/posts/t26986-Can-t-understand-why-anyone-would-choose-surgery-over-Brachytherapy--I-must-be-missing-something

Hopefully someone with a bit more experience of focal therapy will post soon with a better idea of your suitability for it. I have never heard of Lynx?

Edited by member 20 Oct 2021 at 19:57 | Reason: Not specified

Dave

User

Posted 14 Oct 2021 at 18:03

Hi Dave,

I think everyone can relate to your world falling apart when you get this news, we went into a dark hole for a few days not really knowing how things were but we have definitely emerged more positive and stronger than I ever imagined we would.

My husband was diagnosed within the past few months too, but it has spread to atleast one lymph node (and they thought bone…but after 2nd opinion and PSMA pet scan this was changed)

My OH has opted to have surgery and then will have RT later. There are risks with continence and ED but he’s just decided that’s the best way for him (and I don’t think he could do anymore pelvic floor exercises if he tried ha!) He is quite a bit older than you (although fit and healthy) but I am younger, so it’s difficult decisions to make but as far as I was concerned he was going to be on HT for life at one point which would have caused ED and loss of libido anyway so we had sort of come to terms with that in the beginning.

I’m sorry I can’t be of any help with regards to focal therapy or what treatments might be best but wish you all the very best on what you decide.

Like others have said it’s not always quite as scary as first thought (some days it still feels it) and it’s so important to stay positive, fit and healthy and eat well. Take care

User

Posted 14 Oct 2021 at 18:23

LINAC not Lynx - it means linear accelerator- it is the machine that delivers the radiotherapy

Focal therapy is okay if you are fairly robust emotionally and won't fall apart if it fails. Less side effects is very tempting but there is a higher chance that you will need focal therapy to be repeated - or that you will end up with surgery or radiotherapy later.

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

User

Posted 14 Oct 2021 at 23:26

I am sorry that you find yourself in this position but I understand the devastation you feel when cancer is diagnosed.

My husband lived for almost ten years after he found he had cancer and he found out after asking for a psa test as his Dad had died of it at 86.

He went through many different treatments and yes the appointments and scans etc became part of our lives but we did lots of things during the years he had cancer and although things changed in some ways we were closer than ever and enjoyed wonderful holidays and had fun.

It is important to stay positive and to not let it dominate your life. What I notice now, fifteen months since he died, is that there seem to he new ideas on treatments and new possibilities all the time.

I wish you many Happy years and that all goes well for you.

User

Posted 20 Oct 2021 at 19:07

Hi David

I know it sounds daft but I agree with those above who say there's no need to rush if the cancer is still localised in the prostate ........ take your time to research what is the best treatment for you. As a rule prostate cancer is a slow growing cancer. I had intermediate localised PC with a Gleason of 3+4 and PSA of 14 and took 4 months to make up my mind on the treatment.

There is no right or wrong choice - it's what you feel most comfortable with. I choose brachytherapy and don't regret my choice but I know someone who recently had robotic prostatectomy (which in my case was my least favourite option) and has come out of it with no problems at all.

The results of all options vary in patients and with all options some seem to be absolutely fine afterwards and others have problems ........... but most are somewhere in-between. And improvements to treatments are being made all the time.

If after whatever treatment you choose the cancer returns at some time ........ and I'm afraid it does for a good few of us ....... then there are are other options at that time to zap it.

Good luck - and keep us informed of how you get on.

User

Posted 09 Dec 2021 at 12:18

Hello All,

Apologies for not updating on my situation any earlier than this but I have been struggling with the options presented to me.

Since I last posted I have seen a Consultant for HIFU, who has determined I am not a candidate for HIFU due to the fact I have cancer on both sides of my Prostate, but he was willing to do an open prostatectomy, which I declined due to the invasive nature of it.

I have also seen a Consultant about standard beam radiotherapy and Brachytherapy, I have ruled out Standard Beam Radio Therapy as I didn't like the sound of the side effects and potential bowl issues.

So I now have a Radical Prostatectomy booked in for next Thursday using the Da Vinci Machine, with the hope of doing a nerve-sparing procedure but I must admit I am terrified of losing all ED functionality.

It is making me doubt my initial decision in favour of Brachytherapy due to not wanting an operation.

Is this a normal thinking pattern or am i just being paranoid?

User

Posted 09 Dec 2021 at 22:19

I had open surgery and really happy with the outcome. What is your concern about it being invasive?

Edited by member 09 Dec 2021 at 22:20 | Reason: Not specified

User

Posted 14 Dec 2021 at 16:48

Good luck with your decision David. Its a very tough one. I chose RARP with a high volume surgeon in the end. I was terrified of ED and incontinence too but in the end all was fine and was dry from day 1 and erections almost back to normal with no help. If your surgeon is high volume he should be able to give you a reasonable steer on whether he thinks you will have issues with ED and continence. Mine was reasonably optimistic and I chose to believe him. But each case is different and you must go with what feels right for you . You will be very relieved when youve made the decision.

User

Posted 15 Dec 2021 at 08:01

Good morning all,

Thank you so much everyone for all your supportive comments and feedback, I have finally decided to have Robotic Surgery and will be undergoing the procedure tomorrow. I have to be hopeful that some nerves can be spared and I know I am in very good hands with the surgeon and supportive nursing team. Doesn't stop me from feeling a little scared and anxious about the whole process though. I will keep you posted on the outcome when I am able to post.

Show Most Thanked Posts

User

Posted 14 Oct 2021 at 17:04

A lot of options were discussed on this thread:

https://community.prostatecanceruk.org/posts/t26986-Can-t-understand-why-anyone-would-choose-surgery-over-Brachytherapy--I-must-be-missing-something

Hopefully someone with a bit more experience of focal therapy will post soon with a better idea of your suitability for it. I have never heard of Lynx?

Edited by member 20 Oct 2021 at 19:57 | Reason: Not specified

Dave

User

Posted 14 Oct 2021 at 18:03

Hi Dave,

My husband was diagnosed within the past few months too, but it has spread to atleast one lymph node (and they thought bone…but after 2nd opinion and PSMA pet scan this was changed)

I’m sorry I can’t be of any help with regards to focal therapy or what treatments might be best but wish you all the very best on what you decide.

Like others have said it’s not always quite as scary as first thought (some days it still feels it) and it’s so important to stay positive, fit and healthy and eat well. Take care

User

Posted 14 Oct 2021 at 18:23

LINAC not Lynx - it means linear accelerator- it is the machine that delivers the radiotherapy

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

User

Posted 14 Oct 2021 at 23:26

I am sorry that you find yourself in this position but I understand the devastation you feel when cancer is diagnosed.

My husband lived for almost ten years after he found he had cancer and he found out after asking for a psa test as his Dad had died of it at 86.

I wish you many Happy years and that all goes well for you.

User

Posted 14 Oct 2021 at 23:51

Thank you all for the kind welcome and information, the more I hear the harder it seems to make a decision.

Edited by member 14 Oct 2021 at 23:53 | Reason: Not specified

User

Posted 15 Oct 2021 at 02:08

Many on here have had the same struggle in coming to a treatment decision and this has become more didifficult as new treatments or combinations of treatment become options. With all there is a risk of side effects about which one can generalise but until you have the treatment you don't know how severely any treatment will afect you personally until you have had it. Furthermore, there is no certainty that any radical treatment will eradicate your cancer. Indeed, many men do need subsequent treatment of one sort or another soon after or even up to many years later. So, the best you can do is to read about the treatment options open to you and what these entail and decide which you will plump for or just be monitored (AS) until you decide to have it. In this later case your consultant should be able to adise you.

My feeling is that in your position I would not want to give PCa too much of a head start as you could have many years before you. Some very useful information is here if you have not yet read or downloaded it. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Edited by member 15 Oct 2021 at 02:09 | Reason: to highlight link

Barry

User

Posted 15 Oct 2021 at 07:31

Best wishes,

Chris

User

Posted 15 Oct 2021 at 08:05

Hello David,

Like you I was really, really concerned about side effects and spent 2 years on active surveillance effectively kicking the can down the road. Bit the bullet on the end and had nerve sparing open surgery around 18 months ago.

Click on my profile if you would like more details.

Side effects for me have been neglible and I haven't really looked back.

Good luck with your decision and ask away if you want to know more

User

Posted 15 Oct 2021 at 08:05

Dave, I too want to reassure you that once you've come through the initial stages of treatment for PCa, life can be as good or even better than before.

So, 13 years after DX, to hell with PCa, life remains as good as it's ever been.

Edited by member 15 Oct 2021 at 08:16 | Reason: Typos!

User

Posted 15 Oct 2021 at 08:16

Hi David,

I see you had a choice of several options but i can only tell you about my journey with brachytherapy and like you had a few options but decided to go for Brachytherpy as i felt it was less invasive and may also have less side affects.

My cancer was picked up on a private medical for the renewal of my 7.5 ton driving licence with PSA 2.19 and Gleason 3+4=7 and 5 cores out of 20 positive.

I am five years on from my operation and i think i have done well with little or no problems apart from ED but with the help of four Viagra tablets on prescription i think i am winning at the age of 75.If you click on my Avatar you can get the full story.My last yearly PSA result in September 2021 is 0.05 but the Specialist signed me off in January 2021.If i can be of any further help please ask.

Good Luck John.

User

Posted 15 Oct 2021 at 10:02

My friend, in his seventies, Gleason 3+4=7, has been on Active Surveillance for five years.

He has an annual MRI, regular PSA tests, and regular contact with his consultants.

Why don’t you take a year under a similar regimen, to consider your options, and, for now, carry on as normal?

Best of luck.

Cheers, John.

User

Posted 15 Oct 2021 at 16:12

Very sorry to hear your news. It is terrifying at first but this site should be a big support for you on your journey. Check out my profile and thread (and TechGuy’s) as I had very similar diagnosis to you in May 2021, aged 57, opted for surgery with one of the very best high volume surgeons in the UK and have not regretted at all. Im told Im cured ! But who knows PCa is a journey and once youre on it youre on it. But for me life is better than before, I appreciate it more and I was lucky that nerve sparing worked and erections and continence are not a problem at all. So do consider all the options. I was advised at my young age and relatively fit that surgery whilst it was still contained within the prostate was certainly the best option. But you have to trust your gut. So do your research and feel free to ask any questions. The people on this site were so supportive of me and helped me through it.

User

Posted 20 Oct 2021 at 11:22

Hello David. I am very new to this forum as my husband was only diagnosed several weeks ago. and had surgery 48 hours ago !!

However, im writing because your particular context and concerns are exactly as my husbands were. Very similar diagnosis to you; early stage/localised and 3+4. My husband really wanted focal therapy (hifu) for all the reasons discussed - lack of side effects especially. I was pushing for him to consider surgery as i wanted a sense of it "gone" - a more absolute treatment as it were. Guy spoke with a consultant in the south of England where you can be part of the focal therapy trial (they deemed him eligible) He then asked his surgeon to refer him to the hospital in London that offers it, purely so he could get a full consultation. However we discovered the wait time for all this was a bit long for our liking. Guy was very anxious about the side effects of surgery especially urinary incontinence. But he also came to feel that surgery offered him the most effective solution. We learnt from the hifu consultants that while it is extremely promising and will continue to become more available, the probability is that you may need more treatment further down the line - hifu sort of "puts the breaks on". Of course in some instances, it will do more than that and be totally successful.

48 hours ago Guy had surgery and he's really at peace with it. It went well, there was successful nerve sparing and there were no visible signs of cancer elsewhere. Its obviously early days but i think making the decision was the hardest thing (lots of uncertainty and doubt) but since then and post surgery, he feels like it was a good decision.

Not trying to sway you and if you can get a hifu consultation either in London or the South of England (cant say which hospital!) then i would go for it - then at least you have explored all options.

best of luck

User

Posted 20 Oct 2021 at 19:07

Hi David

If after whatever treatment you choose the cancer returns at some time ........ and I'm afraid it does for a good few of us ....... then there are are other options at that time to zap it.

Good luck - and keep us informed of how you get on.

User

Posted 09 Dec 2021 at 12:18

Hello All,

Apologies for not updating on my situation any earlier than this but I have been struggling with the options presented to me.

It is making me doubt my initial decision in favour of Brachytherapy due to not wanting an operation.

Is this a normal thinking pattern or am i just being paranoid?

User

Posted 09 Dec 2021 at 14:00

Completely normal!

At your age / stage RP would still be the "gold standard'..

User

Posted 09 Dec 2021 at 22:19

I had open surgery and really happy with the outcome. What is your concern about it being invasive?

Edited by member 09 Dec 2021 at 22:20 | Reason: Not specified

User

Posted 10 Dec 2021 at 11:48

Hi Dave

Yes it's difficult isn't it! I took 6 months deciding what treatment to have and eventually opted for Brachytherapy. Once I made the decision I stuck by it and was happy with the outcome.

However, 7 years later the cancer has returned and spread a little further so now I am about to have my prostate, seminal vesicles and some lymph nodes removed (Da vinci). I don't regret having brachytherapy because of my circumstances at the time and my local hospital had only just got their first da vinci and were still 'practicing' as far as I was concerned. My local hospital at the time didn't do brachytherapy either.

Cancer can come back whether you have Brachytherapy or prostatectomy and there is no way of knowing if I had had a prostatectomy 7 years ago whether it still would have returned.

From what I have read of your circumstances either brachytherapy or prostatectomy remain great options. What I will say about prostatectomy is that outcomes have improved a lot since I was first diagnosed 7 years ago. Nerve sparing has been vastly improved as have measures to minimise incontinence. I have a friend who had a prostatectomy about a year ago and he was dry after a couple of weeks. And it wasn't long before his erections were back. A couple of weeks after he had had the op he seemed to be the same as he was prior to it! I couldn't believe it!

What I would say is that it's best to have the most experienced person you can to perform the procedure. I would ask how many times they have performed the procedure and the outcomes. I'm not shy when it comes to checking these things - it's my body and I want to be in control.

All the best whichever option you choose.

User

Posted 12 Dec 2021 at 17:33

Good luck

Am in a very similar situation myself.

So much to think about. I havent made the decision yet but am likely to go for robot surgery,

look forward to hear how it works out

Dave

User

Posted 12 Dec 2021 at 22:09

HI Mike,

Thank you for the reply, my main concern is that I will lose my ED functionality and that I feel I am too young for that. I am told I have bilateral cancer and that although it is 3+4=7 on the Gleason scale, I am scared about the impact of Surgery.

Edited by member 12 Dec 2021 at 22:09 | Reason: Not specified

User

Posted 12 Dec 2021 at 22:20

Hi Zumerest,

Firstly, thank you for sharing your experience. It is really helpful as I am looking to seek additional information regarding Brachytherapy this week before my proposed operation on Thursday.

I have also been made aware of MR-Linac, and am wanting to see if this is something that I could be viable for.

I am left with the option of deciding on whether to defer the operation planned for this Thursday and look into Brachytherapy or to carry on as planned and have the operation.

I agree a difficult decision to make.

User

Posted 13 Dec 2021 at 02:05

Quote:

David Weston;26256

I am left with the option of deciding on whether to defer the operation planned for this Thursday and look into Brachytherapy or to carry on as planned and have the operation.

I agree a difficult decision to make.

If you need more time to investigate and come to a firm decision on a treatment, you could ring your hospital today and cancel your operation, although this could lead to quite a wait if you eventually decide that you want to go ahead with surgery. This then gives the surgical team the opportunity, albeit at short notice, to pre op somebody else to take the slot you were allocated on Thursday.

Barry

User

Posted 13 Dec 2021 at 16:18

Hi David

I sympathise with your dilemma, I went through the same 7 years ago. This time round there are very few options for me, so it's (sort of) easier!

I did a lot of research when I was first diagnosed and opted for Brachytherapy for the following reasons:

- less chance of incontinence

- less chance of erectile problems (although as time goes by this can become a problem with brachy)

- I have a stomach operation when I was 17 and have a large scar. I was told that because of this a prostatectomy was trickier and they may have to revert to open surgery during the Da Vinci procedure

- I worked for myself and recovery from Brachy was quicker

It has to be remembered though that this judgement was made 7 years ago - technology, experience etc has come on a lot even in that time. Certainly now the cancer has returned removing the prostate is much more tricky due to radiation 'damage' from the brachy.

Re. Prostatectomy: Unless they have told you otherwise, with nerve sparing treatment I would have thought that you have an excellent chance of erectile function returning reasonably quickly. Also, because of your age I would also expect incontinence not to be an issue from a month or so after the procedure. Your surgeon should have spoken to you about the prospects re. both ED and incontinence. Did he say how much nerve sparing they think they are able to do (e.g. 50%, 100%)? I would also imagine that if you have strong erections now you it is much more likely erections will come back after surgery if you have nerve sparing. The same can be said for urinary symptoms - if all is good at the moment things should recover well.

Re. Brachy: It's a perfectly good procedure and success rates etc are about the same as prostatectomy. However, follow up treatment if the cancer returns is trickier to treat and almost certain to cause worse side effects. Brachy in itself is not without it's side effects and I had some urinary problems afterwards and over time my erections have become less strong.

Just a quick note here - you don't need to have an erection to orgasm. That might not help but it's important folk are aware of that.

It is difficult with both procedures to say what side effects you would have, how long they would last and how severe they would be. Some folk sail through both procedures, some have a rough time but I would imagine with both procedures most folk get back to near normal in time. Certainly with prostatectomy outcomes have improved a lot since I first had to make a decision and it's possible I may have chosen this route should I be making the original decision now. With prostatectomy you also have age on your side.

I think it's just as important to have an experienced person to perform the procedure whichever you choose - and it's worth asking about this.

I know very little about MR-Linac. It's a 'new' procedure and therefore likely that medium to long term side effects are unknown.

Alas, it's only you that can decide which route you go down. As I've said before I think both brachy and prostatectomy are viable options for you.

To be apprehensive before any treatment is normal - esp. when you are not suffering any pain etc ATM. The mind often focuses on the worst case scenario but let's face it that never happens!

Good luck - and let us know what you decide.

Originally Posted by: Online Community Member

Hi Zumerest,

Firstly, thank you for sharing your experience. It is really helpful as I am looking to seek additional information regarding Brachytherapy this week before my proposed operation on Thursday.

I have also been made aware of MR-Linac, and am wanting to see if this is something that I could be viable for.

I am left with the option of deciding on whether to defer the operation planned for this Thursday and look into Brachytherapy or to carry on as planned and have the operation.

I agree a difficult decision to make.

Edited by member 13 Dec 2021 at 16:20 | Reason: Not specified

User

Posted 14 Dec 2021 at 16:48

User

Posted 15 Dec 2021 at 08:01

Good morning all,

User

Posted 15 Dec 2021 at 08:08

Its normal to be scared. We will be thinking of you tomorrow. Good luck

User

Posted 15 Dec 2021 at 09:36

Good luck David, hope all goes really well. My husbands RALP is next Tuesday so we know the anxious feeling. Keep us posted, best wishes

User

Posted 15 Dec 2021 at 09:54

That's great news David - it's always better when you have made up your mind. My surgery is next Monday!

Will be thinking of you tomorrow.

Originally Posted by: Online Community Member

Good morning all,

User

Posted 15 Dec 2021 at 17:19

Good luck- I will have mine early new year..

Dave

User

Posted 15 Dec 2021 at 18:56

Good luck, David.

Had mine a few weeks back. You'll be fine.

Peter

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