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How come all these side affects are ''glossed over'' by the medical profession

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User
Posted 16 Dec 2024 at 18:08

Hi, I am 57 - 

I got diagnosed last week Wednesday with prostate cancer.

I am not that frightened of the cancer - I am however scared shitless !!! about the treatments and side effects.

Urologist recommended the removal of the prostate - even though I am only in stage 1.

I see the Oncologist tomorrow - but realistically, don't think I am mentally strong enough to deal with any of the treatments, or to be more accurate the side effects.

Everyone seems so ''calm'' on this and similar sites, about the side effects.

Is no one that ''concerned''? 

What am I missing? or not understanding?

In the meantime my mind is about to EXPLODE!

Is there anyway to have face to face meetings, get togethers with guys who have had this or other surgery?

I don't want to''pry'' , but feel I am not able to make an informed decision. I need to discuss the ''nitty gritty'', 

and rather embarrassing details of life after surgery.

Including but not limited to:

Erectile disfunction

Sex with your partner, how different is it?

Incontinence

Depression

Fatigue

How happy are you with the decision you made, in hind sight would you have chosen a different procedure.

I know I am asking a lot - but the info on the net is rather ''genetic''

Sex will be different and yes you can have an orgasm without an erection?

Maybe Im too old - I just cant comprehend it all.

Any one willing to volunteer this info?

Once I have had surgery - I will share my experiences with the above, as I cant believe I am the only one looking for answers.

Cheers all

Mack-Mack

 

 

 

 

 

User
Posted 22 Dec 2024 at 00:35

Hi Mack,

I totally get where you are coming from. I'm in sort of the same situation.

After initial diagnosis, I decided on AS, and 18 months on still keen to continue this (if they allow it). At my recent clinic visit to discuss the latest biopsy results, the nurse mentioned the consultant has been very keen for me to come off AS and take radical treatment. 

The 1st biopsy 18 months ago identified as Grade 2 T2 N0 M0. The recent biopsy was a template, but not exactly. My prostate at 26cc was too small for the template so it was done manually to replicate the template.

Cutting to the chase, at the clinic the nurse stated its very unusual in her experience, but I am now showing as Grade 1 with less than 5% of the sample tissue showing adenocarcinoma. They are not dismissing the earlier Grade 2, but latest samples are different. However they do keep reminding me, these are only samples and its very easy to miss the PC. 

For me the AS has not really messed with my mind too much. I'm very much in favour of quality of life. But should I find myself having to make a treatment decision, I'm currently leaning towards 5 session SABR with no HT, that is if I can get the necessary referral to a hospital that will do this, and if they find me a suitable candidate. If I have to pay privately for a SpaceOAR thats fine, its a no-brainer I wouldn't even consider it without that. 

The whole situation may well change and options or decisions might not play out this way.

This forum is amazing and very informative, but I do also know personally people who have had RP and some who have had RT. I've heard good and bad from both options, so its very difficult to apply this to your own situation as clearly every outcome is only every going to be unique to that person. 

User
Posted 16 Dec 2024 at 23:06

Originally Posted by: Online Community Member
Everyone seems so ''calm'' on this and similar sites, about the side effects.

Hello mate.

I'm sorry that you've had to join us but welcome to the forum.

Most of us have felt the same as you're feeling now. 

Most of us appear so 'calm' because we realise the side effects of doing nothing are likely to be much worse than the side effects of treatment. It's really as simple as that.

You can be sure thar nothing is glossed over on here. We tell it as it is. You'll find honest answers to all the question you've raised. This place is packed full of nitty gritty. 🙂

Here's a link to how surgery affected me but everyone's different.

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP

PS: It would be helpful if you could give a few details on your profile, like PSA level, cancer staging and Gleason score.

Good luck mate.👍

Edited by member 16 Dec 2024 at 23:40  | Reason: Additional text

User
Posted 17 Dec 2024 at 01:01

You need to be considering radiotherapy as well as surgery. I'm not saying it is without side effects indeed some people have surgery with almost no side effects, and some have radiotherapy with lots of side effects. 

A problem that you have is that stage 1 cancer is very curable, that means whoever treats you is going to have a good outcome and that is good for their league tables. You need the best treatment for you, not for your surgeon or radiotherapists score.

The latest treatments using radiotherapy require just five doses. Now if you are clinically suitable for that, it is worth considering. You may need referral to another trust to get that treatment.

Dave

User
Posted 18 Dec 2024 at 14:42

Hi Adrian

Thank you, for your prompt reply.

I have already booked the next PSA test, and a follow up with the Oncologist.

Sent dates to the Nurse for the next 3 blood test and MRI Scan.

They have been much more pro-active then the Urologist.

Wishing you a happy Xmas and New Year.

Thanks for making the difference.

 

Mack

User
Posted 21 Dec 2024 at 06:36

It looks like it just me and you on the night shift mate.🙂

You don't give up. You make an informed decision on what you think is best for you.

It's not all doom and gloom. Unfortunately this forum tends to focus on poor outcomes. I guess the vast majority of blokes sail through their treatment and are happily getting on with their lives, never needing to post on here.

Advances in both radical treatments are being made all the time and it seems that improved treatments are reducing the likelihood of side effects. There have been a couple of blokes on here who've recently had special single port robotic surgery and say they have no side effects. Likewise there are a couple of blokes who've had the newish 5 session only radiotherapy and who have had the same recovery. Another bloke commented that he'd been on AS for 8 years and never needed any further treatment and knew of several others who were doing as well.

 A lot of these good news stories are swamped by less successful outcomes, so you don't really get a balanced picture. 

You ask what a good outcome is. I suppose that depends on how ill you are. Basically, to me, the best outcome is the one that leaves you to get on with life as close to how you were, before cancer entered it.

Edited by member 21 Dec 2024 at 06:48  | Reason: Spelling

User
Posted 21 Dec 2024 at 09:29
Mack maybe you need to listen to the professionals on this, if the urologist and oncologist are recommending RP "life" maybe trying to tell you something!

Yes RP can have devastating side effects but it's a opportunity to rid yourself of a disease that will not give you any side effects until it's too late!

User
Posted 21 Dec 2024 at 10:03

I hear what you're saying Francji, but the advice Mack's been given isn't as conclusive as you suggest. His oncologist at first recommended surgery but when Mack told her that he could deal with having cancer and being monitored she said that it was as good an option for him as surgery or radiotherapy. This was echoed by the MDT who said all 3 treatments were suitable. The poor bloke seems to be in the same position as most of us have been in, eg "We'll leave it up to you to decide"

I remember when they were dithering about as to what treatment would be best for me. It went from AS, then to surgery, then to radiotherapy. I can remember being told "If you were my dad I'd be advising you to have radiotherapy" I can remember replying, " If you were my son, you'd know how stubborn I am. I was offered surgery and surgery's what I want."

To date, I think I made the right decision, but I'll never be sure.

Edited by member 21 Dec 2024 at 10:24  | Reason: Typo

User
Posted 21 Dec 2024 at 15:31

Thank God I never got to the point of having to make such a decision, I can begin to imagine how hard it must be.

We take it for granted that our doctors will know what to do and advise us accordingly,  then they up and leave you to make a monumental call on your own. 

I had to have varicose veins treated in my thirties, thing was these were in my scrotum sack. The surgeon said he would do them keyhole wise.

When I woke up I had a six inch long scar on my belly, christ they've done the wrong job I thought. Turns out the surgeon decided to do a different procedure because he hadn't done one for a while and needed to keep his registration current.! 

So doctors lie like cheap watches when they need to. You do have to keep an eye on them. 

User
Posted 21 Dec 2024 at 15:35

Mack,

You ask how I make decision. It was absolutely difficult. I so much wanted to do AS, having done that with Non-Hodgkins lymphoma 20 years ago. I was scared to death of chemotherapy at the time and a myriad of clinical trials I also needed to wade through to come to my decision. Ultimately I had to pull the trigger on treatment. Here I am 20 years later, I managed the side effects of chemotherapy and still have immune system issues from the chemo being immunocompromised , then this one hit. Prior to both my prostate biopsy and prostate surgery to reduce infection risk, I had to get an IVIG infusuion. Except these infusions were not putting killing drugs in my veins, but immunoglobulins to boost my blood system.

      AS certainly is extremely valuable for quality of life issues such as incontinence,  ED and rectal issues that someone may experience with surgery or radiation. I know you mention about feeling that medicine is in the dark ages.  It has taken great strides with prostate cancer. It was overwhelmingly shown prostate cancer patients were over-treated in the past with surgery and radiation, and incurred these side effects when they might have never needed treatment and never incurred side effects that affected quality of life and hence AS. In the old days they just ripped out the prostate with no thought to the side effects or radiated the hell out of the area again not concerned with the side effects. 

 

 It seems with your recommendation and being comfortable with AS at your age why not kick the can down the road. Unfortunately not everyone can remain on AS and as Adrian emphasizes that is the need for continued regular surveillance through PSA checks, MRI’s and additional biopsies. Also unfortunately no one knows exactly when that tipping point at what month or year the cancer needs treating. Many on AS are devastated to hear they now need treatment either as worsening PSA, biopsy or scans appearing to show the cancer has left the capsule. That is the point, it is really difficult to know when that point is going to occur, but if caught early through active surveillance most treatment options including surgery are still available, even if it has just breeched the capsule. I think many people on AS believe it will always be caught just before breaking out and is,  but sometimes it is caught after that, because the cancer for the patients who ultimately will have to leave AS, that cancer is growing. The belief in AS is that this gives patients possibly many years of quality of life with no incontinence and ED and also many times in those patients on AS that AS did not work maybe they have received an additional year or two of no side effects and enjoyed a higher quality of life as Adrian again points out personally. That becomes the trade off if you are able to accept, that if you are on AS and it fails and although the cancer might have left the capsule you will get successfully treated as if you immediately were treated in the first place. The difference is for maybe two additional years you enjoyed the highest quality of life but with the trade off knowing that you have cancer inside of you that could be growing. Understandably that is difficult for some to accept. Also new treatments and techniques are always in the pipeline that if you are able to hold off on treatment it might be something that becomes available to you. AS is a difficult decision but its a trade off.

 

My decision was surgery but I was very scared of surgery and side effects  including just the thought of a catheter for 10 days. Both surgery and radiation have potential side effects, some overlap such as incontinence and ED and others like rectal are tied to radiation. ED after surgery is right away, while it will come later during Radiation treatment or after treatment.  Today versus years ago, leaps in technology have come to minimize these side effects in both procedures. Surgery with Puboprostatic ligament sparing, and Retzius sparing along with procedure technique to reduce or eliminate incontinence. Nerve sparing for ED issues and Robotic Single port entry for overall quicker surgery recovery. Now with Radiation, the development of Space Oar Hydrogel is used to minimize rectal side effects and focal Radiation procedures can also.

For me choosing Surgery it also had to do knowing that I would still have Radiation as a backup and I was approaching 71 and the window to receiving surgery was getting closer to close around 75 but sooner if my health were to deteriorate for any other reasons and preclude surgery. Salvage Radiation is much easier than a Salvage surgery as the surgery is considered much more difficult and done only by certain surgeons very experienced in that salvage surgery.

Another reason I chose surgery was that while I was in surgery after the prostate was removed and the tissue was removed to check on margins, the tissue was sent immediately to the hospital pathology for staining to see whether I had clear margins. This clearly delays the closing of the surgery and in my case my margins did come back positive which surprised the surgeon because based on the hundreds of tissue he visually has seen in surgery which he did not see anything unusual and the PET scan saying it was contained within the prostate really was a surprise. Many Surgeons do not bother with this and at your post surgery appointment they give you the disappointing news that you have positive margin. Well my Surgeon was then able to go back in for 2 more hours delicately continuing nerve sparing and cut for more margin and at my post surgery appointment I was told the final margin was then negative. Without that additional step of my tissue going to pathology I would have been told at my post surgery appointment that unfortunately you have positive margin as many are. His afternoon surgery appointment got delayed by two hours by the surprised breeching of the capsule by the cancer. Immediately upon my catheter coming out I was continent and have minimal ED side effects 90 days out with more improvement expected. I was up walking immediately after surgery and did not even spend that night after surgery in the hospital. Within two weeks I was back to normal activities like driving and getting out and around and traveling. Although my catheter was in for 10 days that was due to a 3 day holiday period but that allowed my surgery to continue to heal. Now on a downside I did get a blood clot in my leg from the surgery likely due to my surgery taking much longer than expected but blood clots are a side effect of any surgery not tied to prostate surgery. Anyways my thoughts on my direction I chose. As also often emphasized on this site it is important to find the right surgeon if that route is taken. I know all the surgical techniques are not available everywhere but they are becoming more available and is also a benefit the longer you may be able to wait the more widespread use of the latest technology further reducing side effects.

 

Sent from my iPhone

 

 

 

Sent from my iPhone

User
Posted 22 Dec 2024 at 20:33

Originally Posted by: Online Community Member
.. I do also know personally people who have had RP and some who have had RT. I've heard good and bad from both options ...

I think that is the challenge. One of the main things I have learned from this forum is that although we have the same cancer, actually we are all different in how it affects us and how we respond to treatment.

So you have to decide knowing that there might be adverse side effects from RP (and you know there will be for the first few weeks) but it might all turn out OK, just as there might be adverse side effects from RT (but less acute and possibly different ones long term) and others from the HT that may well be needed alongside RT. The only side effect of AS is anxiety and only you will know if you can cope with that - and you will have to accept that you probably will need one of the other treatments eventually.

My view is that current RT is less likely to have problematic side effects than RP, but RP has the advantage that PSA should drop down to essentially zero (below the measurement limit) so that any recurrence will be picked up very sensitively and quickly. And RT is suitable for salvage treatment in that case, while the opposite is most likely not feasible.

User
Posted 23 Dec 2024 at 16:06

I agree. I think it is very important people looking towards Active Surveillance are aware of potential risks particularly when their cancer includes pattern 4. That does not mean Active Surveillance is not a suitable option for some with Gleason 3:4 but they need to be aware of the risks and the very strong possibility that in the not too distant future they may require more radical treatment, which again of course will be their individual choice.

Edited by member 23 Dec 2024 at 16:07  | Reason: Not specified

User
Posted 23 Dec 2024 at 16:13

I would certainly agree that for most men doing nothing with a Gleason 8+ prostate cancer is not an option. The exceptions might be men who have a limited life expectancy for some other reason.

But, although statistics are hard to come by, my impression is that the rate of progression without treatment may not be quite as bad as Ned@1 says. For example, in the section of this video from 16.27 Dr Scholz claims that more than half of Gleason 8 cancers will NOT metastasize over a 10 year period and that the percentage only goes above half for Gleason 9+.

https://www.youtube.com/watch?v=GhQCredt9mM

Also, I was interested to explore the life expectancy nomogram on the Kattan website. When I was diagnosed with Gleason 8 at 66, I thought my life expectancy had just been drastically shortened. However, when I looked much later at this nomogram, the implication of it was that I would have had a sporting chance of making it to 80 even without any radical treatment and, who knows, I might even have joined the ranks of men who die without knowing they had prostate cancer.

User
Posted 24 Dec 2024 at 12:36

Mack,

I was a similar Gleason Score of 7 (3+4) — with positive samples in the biopsy being mostly 3+3, with one focal area showing 3+4. The issue for me during about 9 months of AS was precisely the concerns raised by others above - it needs to be *active* and yet PSA is not necessarily a direct measure of disease progression. My PSA went up and then down again over 12 months - causing me to conclude that opting for surgery was better than the ongoing anxiety (around doing all the right things in terms of lifestyle, diet and exercise) and uncertainty of regular monitoring. I am 49 years old and relatively fit, so to elect for surgery early meant better predicted outcomes.

6 weeks later and I’m pretty much back to normal, except for ED - which I understand will be a process. All signs are positive for a “good enough” erectile function though. I think the ED aspect is the most sensitive and very much something that will vary personally. It has brought a different level of expectation into my sex life. One that brings vulnerabilities and one that is resulting in a more intimate and emotional connection with my wife as we work through it together. Like I say - this is six weeks in but it is worth saying it how it is. The decision is yours and yours alone. Whatever you do - life is different now. But that doesn’t have to mean it is worse. In fact, for me at least, this is all part of life’s many enriching experiences.

In your case, the argument for AS is strong - as it was for me. Although that pattern 4 will have the consultants paying closer attention (and something that can’t be measured without another biopsy). I can really empathise with where you are at. I will never know if opting for surgery was the better choice but I can say categorically that I am in a better mental state now, without the uncertainty weighing on me.

User
Posted 02 Jan 2025 at 18:31

Hey Mack-Mack,

HIFU looks an interesting option. It was one I explored as well but was told there was not enough of a focal area detectable in the MRI for it to be effective. This was after having undergone a further higher contrast MRI too.  And yet it turns out there was indeed a focal area (of max 20mm diameter) that they only found in the post-operative histology. Anyway - HIFU does sound worth considering as an option if they deem it suitable for you. I’m sure others on this forum can offer their advice and experiences with that.

The singje port procedure does give comparatively quicker recovery times from what I understand - in terms of being active post surgery, as there are fewer surface wound to heal. But the underlying operation is the same. And the underlying wounds will still take as long to heal. The direction at which the surgeon approaches the prostate appears to have a bearing on continence - in that the retzius sparing method leaves the ligaments involved in continence control there more intact I believe. But it’s not all or nothing. A lot more will be dependent on the nature of your surgery in the first place (which is determined by how much the disease has progressed), as well as your own anatomy and the skill of your surgical team.

It’s a lot to think about. The posts on this forum are full of people going through the same questions. And questions to which there’s no simple answers.

Good luck in your research and speaking with consultants. And do post your thoughts and discoveries here too. 

 

Edited by member 02 Jan 2025 at 19:19  | Reason: Corrected a mistake

User
Posted 03 Jan 2025 at 08:52

Hi Mack

There are a lot of very useful replies on this thread, so I wont repeat lots of stuff that has already been said. I am in a similar situation to Adrian, in that I tried AS and it didn't work for me. I was originally diagnosed as T2, nicely contained within the gland, G3+4=7. 10 months later I was T3a as it had broken out of the capsule, and they found tertiary pattern 5 as well.

The main thing I would advise, is don't be so scared of the side effects if you elect to have radical treatment. I had surgery last July. Ok, I now suffer with ED and incontinence, but you know what?, you get used to it, and the stress it causes is far less than the stress of living with that ticking time bomb down there.

I am not saying don't stay on AS, as that may be a perfectly sound option for you if monitored closely. Just don't write off radical treatment for fear of the side effects. As I keep telling myself, you have to be alive to pee yourself! The ED is frustrating, but I have a meeting with my consultant this afternoon, and he is confident he can help with this by referring me to discuss "some form of mechanical intervention". A spontaneous leg over may be a thing of the past, but hey ho, I'm not 18 any more.

Good luck with whatever you decide mate.

Ian.

User
Posted 03 Jan 2025 at 19:28

Hi Mack,

I’ve been on AS for six years and have been really happy with it. I was diagnosed at 56 and, like you, wasn’t keen on the potential side effects of treatment. For context, I was 4+3=7 in one core only on my first biopsy, then 3+3=6 in one core on my second a year later. I’ve had a PSA test every three months since December 2018 and an MRI every two years. My PSA is currently 2.4. My latest scan has shown a new lesion which has worried the radiologist, so I’ve had a biopsy today. Depending on the results, I’ll either carry on with AS or opt for treatment. My position is while I’m comfortable with risk, there may come a stage when I’m not if and when the cancer develops and the balance starts to tip. But I’ve had a great six years; basically the same as it ever was, to the point where I’d almost forgotten I had cancer and was a little shocked when I got a call about the scan. If you can handle the mental side, I’d say it’s well worth doing. It’s given me time to assess my situation and get used to the idea that I may need treatment at a future date. Best of luck. 

User
Posted 03 Jan 2025 at 23:20

Hi Mack

It can be initially overwhelming and sometimes you just wish the doctors would tell you what you should do rather then leave it up to you decide which treatment to go for.  I think by going on Active Surveillance (AS) it gives you some time to process all the information that you're initially bombarded with and to investigate which options are right for you. I was fortunate enough to be on AS for 6 years before my cancer progressed to stage 2.  I then chose to have a surgery rather than radiotherapy 6 months ago.  For me, surgery felt like the right option and even during my first few months of recovery when I was incontinent and quite down about it all  I never felt that I had made the wrong decision. The side effects can initially be daunting  but they can be managed and there are several treatments out there that can help with them.  I'm still suffering from ED but I know it is still early days for this side effect to improve significantly.

I wish you all the best.

Paul

User
Posted 05 Jan 2025 at 19:54

Mack,

That letter from your Oncologist is a very compelling letter for doing AS. It is really encouraging to see him put that down. You must remember he is obliged to share with you the other options including the prostatectomy especially with a Gleason 7, but that is because AS mentally for some people have a hard time wrapping around leaving “cancer” inside and want and demand the surgery and AS for a Gleason 7 (3+4) favorable is really going to depend on the totality of the results of everything. I did AS or called watchful waiting with another cancer 20 years ago while being monitored and after two years I had to pull the trigger and have chemotherapy. I very much enjoyed my additional two years of non side effects but at times it was difficult knowing my cancer was inside. Again it must be emphasized to follow AS protocol with PSA’s, MRI’s and biopsies as required.

User
Posted 05 Jan 2025 at 20:38

I think part of Mack’s dilemma is one of the oncologist met said if you were my son, father partner I would recommend surgery. This was followed by AS and radiotherapy. I think this conflicting info/ advice would lead to many people feeling very conflicted when trying to reach an informed decision.

User
Posted 05 Jan 2025 at 22:42

IDK2

That would be confusing, but the oncologist sure seems to want to minimize the cancer in the letter. I am actually surprised that he used the words “this truly is a little amount of cancer” in a follow up sentence trying to reinforce his first statement regarding the finding of tiny specs of low grade cancer, although I often think low grade is just Gleason 6. I wonder if there is the availability for Mack of genomic testing such as Decipher or the urine test ExoDx to see how aggressive the cancer is. Maybe the Oncologist is limited by the bureaucracy to recommend AS to divert and delay patients for treatment for as long as possible whether it truly is in their best interest and by his statement that if it was his family he would seek treatment he is expressing his actual view as opposed to what he was supposed to say in that highly directed letter which would point to AS. Maybe it’s time for a second opinion.

User
Posted 06 Jan 2025 at 06:48

Hi Ned

I am not sure the tests you suggest are routinely available on the NHS. Yes I agree the Oncologist written report is unusually written and I do not know if the two oncologist Mack refers to are the same person. 
The real bummer is that the only way to know the true extent or otherwise of the disease is to have a pathologist examine the prostate after removal, the very thing trying to be avoided. 

User
Posted 12 Jan 2025 at 00:24

Now then mate.

I might be wrong, but I think immunotherapy is only used on those with incurable prostate cancer.

I'm sad to see that the thought of radical treatments and their possible side effects are impacting you so badly, Mack. Honestly they are not that bad, mate.

You also can't really compare a type of cancer to a different type of cancer. 

If I had to have a cancer, prostate cancer would be near the top of my list.

 

Edited by member 12 Jan 2025 at 00:26  | Reason: Typo

User
Posted 12 Jan 2025 at 08:22

Dear Mack

 

i am sorry you are finding this so difficult but it is not surprising as there is so much to get your head around. Many men on this forum have found counselling very helpful and this may be something you would benefit from too. I know that many of these same men thought counselling was not for them but having given it a go found it enormously beneficial.Sometimes when our anxiety is very heightened it does not matter what further info we obtain about the cause of our  concern the anxiety does not go away because we still focus on the uncertainties  as rarely can we provided with absolutes. Hopefully some counselling will allow your mind to stand still long enough for you to make more sense of things.

Edited by member 12 Jan 2025 at 08:25  | Reason: Not specified

User
Posted 12 Jan 2025 at 08:44

Mate, not everyone gets side effects. This forum is used mainly by people who've had problems with the disease, treatments and side effects. They'll be thousands of men, who'll we'll  never hear from, that get through treatment relatively unscathed.

Of course there may be difficulties, but if there are, you gradually adapt to them. You could look at it another way, and ask yourself, if they deem treatment is necessary. What are the alternatives. To me, the risks and side effects of doing nothing are far worse.

I'm sure that in the past you'll have successfully dealt with adversity, this is just another challenge, mate. 

Remember, worrying about about things that may never happen only spoils today and will not affect what happens tomorrow.

I wish I could have a pint and a natter with you, perhaps I'd be able to reassure you better. Actually it's one of the reasons I started the thread A place for a chat. It's an area, like a virtual pub, where blokes just have a general chat. It's less formal than communicating on specific cancer related conversations. There's a great bunch of lads who regularly pop in, all with different degrees of the disease, and discuss life after treatment. The banter is fab and we often laugh in the face of adversity. You'd be made very welcome.

https://community.prostatecanceruk.org/posts/t30284-A-place-to-have-a-chat

 

Of course you could also go for counselling or go to face to face support groups. That sort of help has never been my cup of tea but it suits many.

 

Edited by member 12 Jan 2025 at 10:58  | Reason: Additional text

User
Posted 12 Jan 2025 at 10:53

Mack - sorry this doing your head in so much. The advice of counselling sounds good advice - although it’s not something I’ve personally explored, it sure does help to talk about this stuff. Since my first raised PSA, I’ve been quick to mention to people what I’m going through and, in doing so, have discovered several others in my locality going through similar and who I have gone for a coffee with. Nobody has exactly the same diagnosis and personal situation but I have found it incredibly useful to understand and share experiences. 

I think I might represent a more silent majority who emerge relatively unscathed from early radical treatment - and you don’t always hear that. It’s worth voicing that here because this forum (as Adrian points out) may lean towards those experiencing issues.

 

 

User
Posted 12 Jan 2025 at 14:58

Mack , I recently had some radiotherapy at one of the Genesis care centres and they offered 5 free sessions. I don't recall the sessions focusing on the cancer it was more about attitudes to situations.

As already said, forums like this do have more people on it with problems ,than people without problems.

Again as said, side effects are not guaranteed to happen to everyone. I was initially 99 percent dry a couple of weeks after surgery. As regards intercourse with a flaccid penis, I describe my orgasms as out of this world, and the wife has no complaints. 

I am fortunate to have a pro active approach to life's situations , I don't worry about things I can't change, I look for solutions.

Best wishes for the future with whatever route you take.

Thanks Chris 

User
Posted 12 Jan 2025 at 18:30

Hi Mack,

Only just joined this thread as I’ve been away for a while. I was one of the unlucky ones and suffered quite debilitating side effects in HT, At one point I struggled to get out of a chair. I had no real issues with RT…some short term effects with urgency but that soon passed. I’ve always been of the opinion that if you can have RT without HT then it is a much more difficult decision to make between that and surgery. your are quite young so that come into play with your decision. i would have chosen surgery but it was off the table because I was T3B.

Yes, there are side effects from whatever treatment you have, some get off lightly but others have their QOL affected to various degrees. Despite these side effects, life goes on and you learn to adapt…and I think. Most men do. For example I have zero libido(although signs it is just starting to come back) but I can still have sex even though I developed Peyronie’s disease. Zero libido didn’t really bother me…I’d rather just have had a nice cup of coffee🤣🤣🤣, but once I got going I could still have strong orgasms. I can’t imagine what it’s like to have libido but not be able to get an erection and have sex, but the guys I know from Maggies who are in this position, just deal with it and there are things available to help. I think the fact that we are our treatments have hopefully saved our lives helps you come to terms with any side effects, and if you have the support behind you, it makes a huge difference.

I wish you luck whatever you decide to do.

Derek

User
Posted 15 Jan 2025 at 16:44

Mack

Was a bit like you and went on AS for quite a while. Bit the bullet in the end and to be honest after a bit of recovery time I was fine. Have a click on my profile if you are interested in what happened. All the best

User
Posted 21 Jan 2025 at 19:19

The trouble is if the cancer grows significantly for many men the decision  becomes easier because options are ruled out. That is the reality for some. Yes it is very difficult but at least you have all options open to you at this time. There are no guarantees. You could have surgery and experience no incontinence or erectile dysfunction and some fortunate men find themselves in that position but others sadly experience far more serious side effects of surgery. No one can say definitively what your outcome will be in terms of the side effects of surgery or radiotherapy. Your surgeon or oncologist may be able to make a more informed guess but could not talk to you in terms of certainties. That is what makes dealing with this disease so difficult. 

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User
Posted 16 Dec 2024 at 23:06

Originally Posted by: Online Community Member
Everyone seems so ''calm'' on this and similar sites, about the side effects.

Hello mate.

I'm sorry that you've had to join us but welcome to the forum.

Most of us have felt the same as you're feeling now. 

Most of us appear so 'calm' because we realise the side effects of doing nothing are likely to be much worse than the side effects of treatment. It's really as simple as that.

You can be sure thar nothing is glossed over on here. We tell it as it is. You'll find honest answers to all the question you've raised. This place is packed full of nitty gritty. 🙂

Here's a link to how surgery affected me but everyone's different.

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP

PS: It would be helpful if you could give a few details on your profile, like PSA level, cancer staging and Gleason score.

Good luck mate.👍

Edited by member 16 Dec 2024 at 23:40  | Reason: Additional text

User
Posted 17 Dec 2024 at 01:01

You need to be considering radiotherapy as well as surgery. I'm not saying it is without side effects indeed some people have surgery with almost no side effects, and some have radiotherapy with lots of side effects. 

A problem that you have is that stage 1 cancer is very curable, that means whoever treats you is going to have a good outcome and that is good for their league tables. You need the best treatment for you, not for your surgeon or radiotherapists score.

The latest treatments using radiotherapy require just five doses. Now if you are clinically suitable for that, it is worth considering. You may need referral to another trust to get that treatment.

Dave

User
Posted 17 Dec 2024 at 06:54

Originally Posted by: Online Community Member
The latest treatments using radiotherapy require just five doses. Now if you are clinically suitable for that, it is worth considering. You may need referral to another trust to get that treatment.

As Dave says, this relatively new treatment, reducing radiotherapy from 20 or 35 sessions to just 5,  is well worth considering. It wasn't available when I decided on a treatment path, otherwise I may have chosen it. 

User
Posted 17 Dec 2024 at 08:15
Normally low risk, Gleason score 6,Active Surveillance is the preferred “treatment” option. Indeed the medical professionals are wanting to evidence this as the preferred option for low risk disease as they want to counter the argument of over treatment of prostate cancer. I would imagine if you are being recommended radical options it is because in your personal circumstances that is the best option for you.

If you however are Gleason score 6, low volume and you are reluctant to have radical treatment you should explore again why Active Surveillance is not being offered to you as the preferred option.

User
Posted 17 Dec 2024 at 09:28

Hello Mack,

This how I felt after reading peoples experiences of side effects, and this is just after finding out you have prostate cancer. I was thinking I don't want any of this. However like Adrian says the alternative of doing nothing is much worse. 

After a while I realised this site is a god send, you can get so much more information and real life stories and make a much more informed choice in the direction you want to go treatment wise. 

I've chosen Hormone Therapy and Radiotherapy and I'm happy with my choice. I've been relatively lucky side effects wise so far and they've been quite mild. ED not too bad with the help of tadalafil, mild hot flushes, achy elbows, a bit of weight gain and some loss of strength, I'm hoping to reverse these once off the HT in 18 months time

ED can get you further down the line (years) with the RT, where as with surgery you hit by ED straight away but then things can improve over time, especially with nerve sparing surgery which it sounds like you'd be suitable for.

You don't need to rush into a decision

All the best

John

 

Edited by member 17 Dec 2024 at 09:54  | Reason: Not specified

User
Posted 18 Dec 2024 at 14:15

Hi Adrian,

IT still a mind f@$£% - sorry - I just cant get my head around how you are coping with the side effects.

How do you make that decision?

I take my hat off to you guys.

I am 57 years old.

Always under the impression that I was physically relatively healthy. I was overweight for the best part of the last 10 years  - but have been back at a normal weight for just over a year. do lots of walking and a few gym sessions a week.

I have an amazing and very supportive wife - whatever decision I make .

Well nearly- I had made a decision that if it was life threatening - that I would live with it, refusing the treatment options - rather living a shorter ''quality'' life, then going through with the treatments and side affects. 

Needless to say this had caused much consternation in the household with my wife and daughters.

Been accused of been egotistical, not thinking or loving my family etc.

Needless to say we have had our fair share of arguments over this decision. 

I have a ''back ground'' of poor mental health, poor body self image,. I just could not see myself going through this - I don't want to go down that rabbit hole of depression again. I have bought the T-shirt - more then once! seen therapists, Psychologists etc - most of my life, been on anti depressants (More than once) - just ''existing'' in that zombie state- not really living. 

The meeting with the Urologist - messed with my mind - his options were basically do nothing or have the prostate removed . I was like - OMG - this is two very complete extremes!!

The Oncologist meeting yesterday - was much more informative.

she explained in a much clearer away (Although to be fair - the Urologist may have as well - i cant honestly remember)

Her options were in order of her preference.i.e  if I was her partner/ son, father etc

Removal of Prostate

Active Monitoring

Radio therapy.

The disciplinary group - suggested - open to all treatments 

After much discussion we have settled on Active Monitoring

The reasons been: (And I may need to be corrected on this)

PSA Blood test - A score of 6.49

MRI Scan showed a possible ''legion'' on the right side

After Biopsy, right side was said to be benign.

However their was some abnormalities on the left side of the prostate.

 My understanding is 12 samples were taken during the biopsy of 12mm per sample - does this sound right?

Only two samples showed abnormal cells, and apparently only 1 mm in each sample?

The one sample was a 3+3

The other sample was a 3+4

Because my PSA level is relatively low - I am in between a Level 1 and Level 2 - not sure if this is right?

I asked about focal therapy as a option and was told that their was nothing ''to see'' so the focal therapy people would not know where to target the sound waves to. 

Would that be correct?

Oncologist - said her first choice would be surgery - because i was young and relatively fit/ heathy - not sure if thats Doctor speak for not been over weight?

This was so as not to worry that I had cancer in my body.

I boldly declared that Im not afraid of the cancer - I was just petrified of the side effects of the various treatments that were being offered.

She agreed that at this stage that Active monitoring is as good as the other two treatments - for at least the next 10 years if the PSA levels remained low/ constant and did not go over 10, or double over the next 2 or 3 years. A bit confused as this then will mean my PSA will be over 10. She also mentioned that she had patients who were on active monitoring for 25 years.

Needless to say I have chosen this path - and hopefully I can keep my PSA under 10.

I also asked her how do I keep the PSA level low. exercise is apparently one of the best ways. do some research on line - it is fascinating. Good diet and and supplementing - again not sure if I can give that advise on line. But it an active ingredient in tomatoes.

Just so that you all know - i have been seeing a mental health professional through out this period. Probably the reason I can actually communicate this with you. I would definitely recommend - this is no time to be a man - you will need every tool available to get through this.

I have cried, I have despaired, I have contemplated the unthinkable.

I am here - anyone who needs a shoulder to cry on, needs an ear to listen, wants to talk about there fears - I am here.

I cant tell you what to do, I am not trained in any way to deal with this - and we might just both cry!!

But if it comforts you even the slightest - then we have accomplished something.

Not sure how we go about getting my phone number out their - one of the techies - please advise.

Im a bit of a technical dinosaur.

Thank you to everyone sharing their journey.

It is appreciated,

Take care and look after yourselves

mack

 

 

 

 

 

User
Posted 18 Dec 2024 at 14:23

I was told about this option - but it was said to have harsher side effects then the 4 week 20 sessions.

would that be right. At the moment i have an overload of Information.

I worry that some men just make a decision , for the sake of making a decision - 

I was starting to feel ''pressurised'' - not by anyone but by myself - to make some sort of decision - 

Although their was definitely a strong push for removal of prostate - I get a feeling some men might just agree because of this. 

User
Posted 18 Dec 2024 at 14:28

Hi again Mack.

After reading your latest information, I would also opt for active surveillance. The only advice I'd give you, mate, is make sure that your monitoring is ACTIVE. Ensure that you have your regular PSA checks and periodic follow up MRIs and if necessary biopsies.

I hope, like about 70%, of blokes on AS, that you never need to have any radical treatment. 

Best of luck pal and I hope you have a great relaxed Xmas. 👍

 

User
Posted 18 Dec 2024 at 14:42

Hi Adrian

Thank you, for your prompt reply.

I have already booked the next PSA test, and a follow up with the Oncologist.

Sent dates to the Nurse for the next 3 blood test and MRI Scan.

They have been much more pro-active then the Urologist.

Wishing you a happy Xmas and New Year.

Thanks for making the difference.

 

Mack

User
Posted 18 Dec 2024 at 20:22
Mack, there are a couple of things you need to bear in mind.

First, that while the two main interventions are said to have similar outcomes, by definition if someone is looking at 10 year results they are assessing the technologies as they were over 10 years ago. There have been advances in both surgery and radiotherapy, though I get the impression they are most dramatic in radiotherapy. And in either case, it depends on whether your local hospital has the latest equipment and skills.

Second, while this forum is an amazing source of information and support, you have to recognise that we are a self-selecting crowd and those who didn't get side effects will simply have got on with their lives and stopped checking in here. It might not give a representative impression.

Those analyses of outcomes usually report that active surveillance has similar outcomes to intervention. That is a little bit of a cheat, it only works for those where AS is a recommended approach (so filters out those with worse diagnoses) and doesn't track how long before those particular patients will need an intervention anyway. But of course a delay of even just a couple of years means you won't get side effects during that time, which sounds to me a big win.

User
Posted 19 Dec 2024 at 07:41

Hi Mack

My understanding is if you have a lesion Gleason score 3:4 you are grade 2.  Grade 1 is normally Gleason score 3:3 . However you may be stage 1 if your disease was not detectable on an MPMRI. Smaller lesions are often not. My husband following surgery was found to have three small lesions not picked up on the MPMRI or by biopsy.

In respect of keeping PSA low I am not entirely convinced there is anything that can be done to achieve this. Prostate cancer is not strongly linked to weight, level of exercise, diet etc. indeed it seems to strike very fit people. There has however been clinical trials into the benefits of Phyto Plus and Yourgut plus which you can read about on this forum. The findings I think will be reported early next year and these products are readily available. 

I am pleased that you have reached a decision about your treatment moving forward and I hope this gives you some peace. I am also pleased you have dates booked to monitor your situation moving forward. You will need to exercise caution as much of the data available about the success or otherwise of Active Surveillance is based on very low risk prostate cancer ie Gleason 3:3 and you have some albeit I suspect very small amount of the much more aggressive pattern 4. Certainly more people with Gleason 3:4 are initially pursuing Active Surveillance from what I have read. I wish you good luck for the future but do monitor closely any progression in your disease so should you choose you can take a radical option whilst the outcomes are likely to remain very positive.

Edited by member 19 Dec 2024 at 08:02  | Reason: Not specified

User
Posted 21 Dec 2024 at 04:18

Mack,

I know it’s easy to say try and stay calm, but remember members on this forum that are offering their stories and guidance are because they have experienced what you are going through. These are not just your friends, loved ones, or others that certainly have good intentions but they have not been necessarily where you are today. Unfortunately members of any support group might skew in a certain direction as J-B indicated. He is right. You can tell by this forum which is typical that there are 25 views for each comment. Many more are coming here out of concern for their situation seeking guidance then have remained within this forum posting. Again likely many more have experienced minimal side effects of the surgery but don’t spend the time on the board. Many who do are absolutely honest in their evaluation of their current status regarding their side effects and they are seeking out others that might have similar circumstances for support or to share with others to help them. Others not as many because many without side effects have moved on will share that they have had minimal side effects and likely have remained on the site to share this information with the new recently diagnosed concerned members to give a positive outlook. I have had minimal  side effects but going into this I was 100% Absolutely scared that I was going to be incontinent and have ED and sex with my wife was over. Once I learned that was not necessarily what was going to happen from being on sites like this it helped. Urologists and anyone would be remiss if they did not share possible side effects. But as it says possible side effects. You can’t pick  up your prescription for medication without being scared to death after reading the possible side effects, but taking the medication is necessary. It’s where you want to be in five, ten, or fifteen years. I imagine around your loved ones and family. None of the possible side effects are trade offs for that. If I had been told guaranteed side effects not possible I would still go with the side effects to be with my loved ones.

User
Posted 21 Dec 2024 at 05:16

Dear Ned@1,

 

Thank you for sharing.

I have decided to go for active surveillance.-'' kicking the can down the road''

I just cannot figure out - how to make a decision , how do you make that decision.

I am just beside myself, on all the possible side effects - I cant get my head around it.

It feels like we are in the dark ages of medicine.

I dont know how, or what to do

Mack

 

 

User
Posted 21 Dec 2024 at 05:38

Hi again Mack.

There have been many on here who feel the same as you. A lot of us feel mystified, that in this day and age, the radical treatment path is often not decided by clinicians, but left to the patient. At times, to me, it felt like noone was prepared to take control of the situation, as they were fearful of repercussions.

I suspect that one day, artifical intelligence will take over. It will number crunch all your diagnostic factors and pick a treatment path which is most likely to give you the best outcome. 

As it stands today, there are no guarantees to any treatments.

I've been down two paths. I started on active surveillance but unfortunately my disease progressed and I ended up having surgery.

Although my AS failed, it's still the route I would have taken. The beauty of it is if you're not happy with it or your condition worsens you can opt for more radical treatment.

I'm a great believer if something isn't broken don't try and fix it. If doctors are telling you active surveillance is a suitable treatment plan for you, it's the one I'd take. If for no other reason, than it eliminating side effects.

There are folk on here who'll disagree with me. They'll say it's too risky, and occasionally things do go awry and sometimes they might. However, I decided the risk was worth taking. It didn't work out for me, but statistically it does for the vast majority.

Even though my AS ultimately failed, it gave me almost two years of side effect free living.

As I've often said before, you need to have the right mindset for AS, and you need to ensure that you are thoroughly monitored.

You comparing AS to 'kicking the can down the road' is quite apt. It is possible that you may end up, unhindered, kicking that can for the rest of your natural life or you might die of something else of get runover by a bus. 🙂

Try and keep your chin up mate. Make a decision, stick to it and try not to ever question the decision you've made. Good luck pal.

 

Edited by member 21 Dec 2024 at 06:16  | Reason: Typo

User
Posted 21 Dec 2024 at 06:09

Hi Adrian,

Thank you for sharing - I appreciate your comments.

My mindset about actually having cancer is pretty good. Fortunately I do not have any symptoms and and am in pretty good shape with my physical health. Recently had a full medical, no specific reason apart from the fact that my wife's medical aid provides this on a annual basis. The Mrs has nagged me for years to do the medical and i relented in October this year.

Apart from a raised PSA, all other tests were within the expected range.

I suppose this is part of the mind f@%@£ - I feel healthy, I live an active life, don't smoke, only drink alcohol on special occasions have a relatively good diet.

and then - you are told you have cancer - so now you are supposed to be ''sick''

I don't feel sick and have similar thoughts, as to not to do something until you need to.

But when that day comes that you need to make that decision - 

What then ?

Apart from the Active surveillance

The Radical Prostectomy was and is still been offered as an alternative.(I think the Urologist is disappointed in me not taking this option- well their goes the Xmas bonus)

The Oncologist suggested that this would be her preferred option  - for me and would not recommend the Radio therapy, but it is an option.

I am all over the place it is suggested that some men have hardly any side effects and others are badly effected with side effects.

What is considered a good outcome?

Their just seems to be too many variables.

In the meantime I am driving myself insane - looking at alternative therapies, food to eat, food to exclude, their is a whole jungle of hocus pocus out their on the net.

I just want to give in/ give up and let someone else take control.

Is this how a decision is finally made?

Do you just give up?

 

 

 

 

User
Posted 21 Dec 2024 at 06:36

It looks like it just me and you on the night shift mate.🙂

You don't give up. You make an informed decision on what you think is best for you.

It's not all doom and gloom. Unfortunately this forum tends to focus on poor outcomes. I guess the vast majority of blokes sail through their treatment and are happily getting on with their lives, never needing to post on here.

Advances in both radical treatments are being made all the time and it seems that improved treatments are reducing the likelihood of side effects. There have been a couple of blokes on here who've recently had special single port robotic surgery and say they have no side effects. Likewise there are a couple of blokes who've had the newish 5 session only radiotherapy and who have had the same recovery. Another bloke commented that he'd been on AS for 8 years and never needed any further treatment and knew of several others who were doing as well.

 A lot of these good news stories are swamped by less successful outcomes, so you don't really get a balanced picture. 

You ask what a good outcome is. I suppose that depends on how ill you are. Basically, to me, the best outcome is the one that leaves you to get on with life as close to how you were, before cancer entered it.

Edited by member 21 Dec 2024 at 06:48  | Reason: Spelling

User
Posted 21 Dec 2024 at 09:29
Mack maybe you need to listen to the professionals on this, if the urologist and oncologist are recommending RP "life" maybe trying to tell you something!

Yes RP can have devastating side effects but it's a opportunity to rid yourself of a disease that will not give you any side effects until it's too late!

User
Posted 21 Dec 2024 at 10:03

I hear what you're saying Francji, but the advice Mack's been given isn't as conclusive as you suggest. His oncologist at first recommended surgery but when Mack told her that he could deal with having cancer and being monitored she said that it was as good an option for him as surgery or radiotherapy. This was echoed by the MDT who said all 3 treatments were suitable. The poor bloke seems to be in the same position as most of us have been in, eg "We'll leave it up to you to decide"

I remember when they were dithering about as to what treatment would be best for me. It went from AS, then to surgery, then to radiotherapy. I can remember being told "If you were my dad I'd be advising you to have radiotherapy" I can remember replying, " If you were my son, you'd know how stubborn I am. I was offered surgery and surgery's what I want."

To date, I think I made the right decision, but I'll never be sure.

Edited by member 21 Dec 2024 at 10:24  | Reason: Typo

User
Posted 21 Dec 2024 at 15:31

Thank God I never got to the point of having to make such a decision, I can begin to imagine how hard it must be.

We take it for granted that our doctors will know what to do and advise us accordingly,  then they up and leave you to make a monumental call on your own. 

I had to have varicose veins treated in my thirties, thing was these were in my scrotum sack. The surgeon said he would do them keyhole wise.

When I woke up I had a six inch long scar on my belly, christ they've done the wrong job I thought. Turns out the surgeon decided to do a different procedure because he hadn't done one for a while and needed to keep his registration current.! 

So doctors lie like cheap watches when they need to. You do have to keep an eye on them. 

User
Posted 21 Dec 2024 at 15:35

Mack,

You ask how I make decision. It was absolutely difficult. I so much wanted to do AS, having done that with Non-Hodgkins lymphoma 20 years ago. I was scared to death of chemotherapy at the time and a myriad of clinical trials I also needed to wade through to come to my decision. Ultimately I had to pull the trigger on treatment. Here I am 20 years later, I managed the side effects of chemotherapy and still have immune system issues from the chemo being immunocompromised , then this one hit. Prior to both my prostate biopsy and prostate surgery to reduce infection risk, I had to get an IVIG infusuion. Except these infusions were not putting killing drugs in my veins, but immunoglobulins to boost my blood system.

      AS certainly is extremely valuable for quality of life issues such as incontinence,  ED and rectal issues that someone may experience with surgery or radiation. I know you mention about feeling that medicine is in the dark ages.  It has taken great strides with prostate cancer. It was overwhelmingly shown prostate cancer patients were over-treated in the past with surgery and radiation, and incurred these side effects when they might have never needed treatment and never incurred side effects that affected quality of life and hence AS. In the old days they just ripped out the prostate with no thought to the side effects or radiated the hell out of the area again not concerned with the side effects. 

 

 It seems with your recommendation and being comfortable with AS at your age why not kick the can down the road. Unfortunately not everyone can remain on AS and as Adrian emphasizes that is the need for continued regular surveillance through PSA checks, MRI’s and additional biopsies. Also unfortunately no one knows exactly when that tipping point at what month or year the cancer needs treating. Many on AS are devastated to hear they now need treatment either as worsening PSA, biopsy or scans appearing to show the cancer has left the capsule. That is the point, it is really difficult to know when that point is going to occur, but if caught early through active surveillance most treatment options including surgery are still available, even if it has just breeched the capsule. I think many people on AS believe it will always be caught just before breaking out and is,  but sometimes it is caught after that, because the cancer for the patients who ultimately will have to leave AS, that cancer is growing. The belief in AS is that this gives patients possibly many years of quality of life with no incontinence and ED and also many times in those patients on AS that AS did not work maybe they have received an additional year or two of no side effects and enjoyed a higher quality of life as Adrian again points out personally. That becomes the trade off if you are able to accept, that if you are on AS and it fails and although the cancer might have left the capsule you will get successfully treated as if you immediately were treated in the first place. The difference is for maybe two additional years you enjoyed the highest quality of life but with the trade off knowing that you have cancer inside of you that could be growing. Understandably that is difficult for some to accept. Also new treatments and techniques are always in the pipeline that if you are able to hold off on treatment it might be something that becomes available to you. AS is a difficult decision but its a trade off.

 

My decision was surgery but I was very scared of surgery and side effects  including just the thought of a catheter for 10 days. Both surgery and radiation have potential side effects, some overlap such as incontinence and ED and others like rectal are tied to radiation. ED after surgery is right away, while it will come later during Radiation treatment or after treatment.  Today versus years ago, leaps in technology have come to minimize these side effects in both procedures. Surgery with Puboprostatic ligament sparing, and Retzius sparing along with procedure technique to reduce or eliminate incontinence. Nerve sparing for ED issues and Robotic Single port entry for overall quicker surgery recovery. Now with Radiation, the development of Space Oar Hydrogel is used to minimize rectal side effects and focal Radiation procedures can also.

For me choosing Surgery it also had to do knowing that I would still have Radiation as a backup and I was approaching 71 and the window to receiving surgery was getting closer to close around 75 but sooner if my health were to deteriorate for any other reasons and preclude surgery. Salvage Radiation is much easier than a Salvage surgery as the surgery is considered much more difficult and done only by certain surgeons very experienced in that salvage surgery.

Another reason I chose surgery was that while I was in surgery after the prostate was removed and the tissue was removed to check on margins, the tissue was sent immediately to the hospital pathology for staining to see whether I had clear margins. This clearly delays the closing of the surgery and in my case my margins did come back positive which surprised the surgeon because based on the hundreds of tissue he visually has seen in surgery which he did not see anything unusual and the PET scan saying it was contained within the prostate really was a surprise. Many Surgeons do not bother with this and at your post surgery appointment they give you the disappointing news that you have positive margin. Well my Surgeon was then able to go back in for 2 more hours delicately continuing nerve sparing and cut for more margin and at my post surgery appointment I was told the final margin was then negative. Without that additional step of my tissue going to pathology I would have been told at my post surgery appointment that unfortunately you have positive margin as many are. His afternoon surgery appointment got delayed by two hours by the surprised breeching of the capsule by the cancer. Immediately upon my catheter coming out I was continent and have minimal ED side effects 90 days out with more improvement expected. I was up walking immediately after surgery and did not even spend that night after surgery in the hospital. Within two weeks I was back to normal activities like driving and getting out and around and traveling. Although my catheter was in for 10 days that was due to a 3 day holiday period but that allowed my surgery to continue to heal. Now on a downside I did get a blood clot in my leg from the surgery likely due to my surgery taking much longer than expected but blood clots are a side effect of any surgery not tied to prostate surgery. Anyways my thoughts on my direction I chose. As also often emphasized on this site it is important to find the right surgeon if that route is taken. I know all the surgical techniques are not available everywhere but they are becoming more available and is also a benefit the longer you may be able to wait the more widespread use of the latest technology further reducing side effects.

 

Sent from my iPhone

 

 

 

Sent from my iPhone

User
Posted 22 Dec 2024 at 00:35

Hi Mack,

I totally get where you are coming from. I'm in sort of the same situation.

After initial diagnosis, I decided on AS, and 18 months on still keen to continue this (if they allow it). At my recent clinic visit to discuss the latest biopsy results, the nurse mentioned the consultant has been very keen for me to come off AS and take radical treatment. 

The 1st biopsy 18 months ago identified as Grade 2 T2 N0 M0. The recent biopsy was a template, but not exactly. My prostate at 26cc was too small for the template so it was done manually to replicate the template.

Cutting to the chase, at the clinic the nurse stated its very unusual in her experience, but I am now showing as Grade 1 with less than 5% of the sample tissue showing adenocarcinoma. They are not dismissing the earlier Grade 2, but latest samples are different. However they do keep reminding me, these are only samples and its very easy to miss the PC. 

For me the AS has not really messed with my mind too much. I'm very much in favour of quality of life. But should I find myself having to make a treatment decision, I'm currently leaning towards 5 session SABR with no HT, that is if I can get the necessary referral to a hospital that will do this, and if they find me a suitable candidate. If I have to pay privately for a SpaceOAR thats fine, its a no-brainer I wouldn't even consider it without that. 

The whole situation may well change and options or decisions might not play out this way.

This forum is amazing and very informative, but I do also know personally people who have had RP and some who have had RT. I've heard good and bad from both options, so its very difficult to apply this to your own situation as clearly every outcome is only every going to be unique to that person. 

User
Posted 22 Dec 2024 at 13:24

Hi Mack-Mack

You have had some very useful replies here.

Briefly my experience and thoughts: What you are going through is what all men experience when diagnosed with prostate cancer. I had surgery over 13 years ago and I am still here enjoying my life, in all its aspects, with my wife of over 60 years, children and grandchildren. My decision to have surgery was entirely based on the MRI images showing that the cancer was well contained with clear margins and I had complete confidence in the consultant; he told me that the robot-assisted-surgery would be nerve-sparing but could not promise the final outcome. The surgery was very long and complicated. Recovery was difficulty - the catheter was in place for five weeks - and initially I suffered from complete incontinence. I am now 99.9% continent, leak when sexually excited and at orgasm; I use a very light pad for confidence. My experience is good-news-bad-news variety! To help other men and their wives/partners I have a long thread on this site which you may find useful:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

I cannot emphasis enough that prostate cancer, its diagnosis, treatment and recovery patterns are so varied that whilst it is useful, informative and encouraging (or not at times!) to read other men's experiences, ultimately you are going to have to make a choice in conjunction with various consultants; once you do that be confident and live your life 'forward'. Finally, do we regret our choice of treatment? No we don't, but then hindsight is a wonderful skill! 

You mentioned the possibility of face to face meeting with others - this is an excellent idea because this disease is a lonely business. I would be more than happy to chat if you private message me. 

I wish you good luck because that is what we all need.

 

Edited by member 22 Dec 2024 at 13:27  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 22 Dec 2024 at 20:33

Originally Posted by: Online Community Member
.. I do also know personally people who have had RP and some who have had RT. I've heard good and bad from both options ...

I think that is the challenge. One of the main things I have learned from this forum is that although we have the same cancer, actually we are all different in how it affects us and how we respond to treatment.

So you have to decide knowing that there might be adverse side effects from RP (and you know there will be for the first few weeks) but it might all turn out OK, just as there might be adverse side effects from RT (but less acute and possibly different ones long term) and others from the HT that may well be needed alongside RT. The only side effect of AS is anxiety and only you will know if you can cope with that - and you will have to accept that you probably will need one of the other treatments eventually.

My view is that current RT is less likely to have problematic side effects than RP, but RP has the advantage that PSA should drop down to essentially zero (below the measurement limit) so that any recurrence will be picked up very sensitively and quickly. And RT is suitable for salvage treatment in that case, while the opposite is most likely not feasible.

User
Posted 23 Dec 2024 at 00:04

Originally Posted by: Online Community Member

I hear what you're saying Francji, but the advice Mack's been given isn't as conclusive as you suggest. His oncologist at first recommended surgery but when Mack told her that he could deal with having cancer and being monitored she said that it was as good an option for him as surgery or radiotherapy. This was echoed by the MDT who said all 3 treatments were suitable. The poor bloke seems to be in the same position as most of us have been in, eg "We'll leave it up to you to decide"

 

The Oncologist recommendation was pretty clear - surgery.

The fact that any treatment OR do nothing are all equal for 10 to 15 years is also true and demonstrable by the statistics, that is just the nature of prostate cancer caught early.

The catch of do nothing may come at 10 to 15  years!

That is why the final choice is the patients, he is taking the risk and he will have to live with the consequences of his choice.

User
Posted 23 Dec 2024 at 06:19

Hi Adrian,

Thank you for your reply, been open and honest is such a relief for me.

I'm trying to be positive, but maybe I should just take it a day ay a time.

Thanks again

User
Posted 23 Dec 2024 at 06:30

Hi Ned@1

Wow - thank you for your feedback, this sort of information gives me hope.

You and Adrian are giving  life stories - with real meaning.

 I really appreciate the input.

User
Posted 23 Dec 2024 at 15:30

Francij1

I would respectfully disagree that any treatment or doing nothing is equal at 10 to 15 years if caught early is demonstrable by the statistics. Gleason 6 cancers by many Doctors are being considered as no cancer and your statistics for these cancers is that they are demonstrably slow growing, but advanced Gleason 8, and 9 and 10 are demonstrably fast growing through Decipher statistics and other genome testing. Doing nothing with these cancers is not an option regardless even in a science world where someone was diagnosed on day 1 of their cancer inception, its not 10 to 15 years, it will metastasize quickly under 5 years if its an aggressive cancer and nothing to treat it is done.

User
Posted 23 Dec 2024 at 16:06

I agree. I think it is very important people looking towards Active Surveillance are aware of potential risks particularly when their cancer includes pattern 4. That does not mean Active Surveillance is not a suitable option for some with Gleason 3:4 but they need to be aware of the risks and the very strong possibility that in the not too distant future they may require more radical treatment, which again of course will be their individual choice.

Edited by member 23 Dec 2024 at 16:07  | Reason: Not specified

User
Posted 23 Dec 2024 at 16:13

I would certainly agree that for most men doing nothing with a Gleason 8+ prostate cancer is not an option. The exceptions might be men who have a limited life expectancy for some other reason.

But, although statistics are hard to come by, my impression is that the rate of progression without treatment may not be quite as bad as Ned@1 says. For example, in the section of this video from 16.27 Dr Scholz claims that more than half of Gleason 8 cancers will NOT metastasize over a 10 year period and that the percentage only goes above half for Gleason 9+.

https://www.youtube.com/watch?v=GhQCredt9mM

Also, I was interested to explore the life expectancy nomogram on the Kattan website. When I was diagnosed with Gleason 8 at 66, I thought my life expectancy had just been drastically shortened. However, when I looked much later at this nomogram, the implication of it was that I would have had a sporting chance of making it to 80 even without any radical treatment and, who knows, I might even have joined the ranks of men who die without knowing they had prostate cancer.

User
Posted 23 Dec 2024 at 16:34

Originally Posted by: Online Community Member

Francij1

I would respectfully disagree that any treatment or doing nothing is equal at 10 to 15 years if caught early is demonstrable by the statistics. Gleason 6 cancers by many Doctors are being considered as no cancer and your statistics for these cancers is that they are demonstrably slow growing, but advanced Gleason 8, and 9 and 10 are demonstrably fast growing through Decipher statistics and other genome testing. Doing nothing with these cancers is not an option regardless even in a science world where someone was diagnosed on day 1 of their cancer inception, its not 10 to 15 years, it will metastasize quickly under 5 years if its an aggressive cancer and nothing to treat it is done.

I was only talking about mack-mack who is 3+7 

I would hope "doing nothing" would never be an option considered by anyone <60 and >G7.

User
Posted 24 Dec 2024 at 12:36

Mack,

I was a similar Gleason Score of 7 (3+4) — with positive samples in the biopsy being mostly 3+3, with one focal area showing 3+4. The issue for me during about 9 months of AS was precisely the concerns raised by others above - it needs to be *active* and yet PSA is not necessarily a direct measure of disease progression. My PSA went up and then down again over 12 months - causing me to conclude that opting for surgery was better than the ongoing anxiety (around doing all the right things in terms of lifestyle, diet and exercise) and uncertainty of regular monitoring. I am 49 years old and relatively fit, so to elect for surgery early meant better predicted outcomes.

6 weeks later and I’m pretty much back to normal, except for ED - which I understand will be a process. All signs are positive for a “good enough” erectile function though. I think the ED aspect is the most sensitive and very much something that will vary personally. It has brought a different level of expectation into my sex life. One that brings vulnerabilities and one that is resulting in a more intimate and emotional connection with my wife as we work through it together. Like I say - this is six weeks in but it is worth saying it how it is. The decision is yours and yours alone. Whatever you do - life is different now. But that doesn’t have to mean it is worse. In fact, for me at least, this is all part of life’s many enriching experiences.

In your case, the argument for AS is strong - as it was for me. Although that pattern 4 will have the consultants paying closer attention (and something that can’t be measured without another biopsy). I can really empathise with where you are at. I will never know if opting for surgery was the better choice but I can say categorically that I am in a better mental state now, without the uncertainty weighing on me.

User
Posted 30 Dec 2024 at 19:12

Dear Mark,

 

Thank you for your honest reply.

I am still all over the place, and will at least for now continue with Active Surveillance.

I am doing research and am in the process of trying to get an appointment with a Focal Therapy specialist.

To see if the Nanno Knife or HIFU treatments are options?

Less invasive and fewer side effects.

I also believe that Single Port Robotic surgery have better odds when it comes to incontinence?

As well as a quicker recovery time.

Time will tell if I have / am making the right decision.

Wishing you all a very Happy Healthy New year

 

 

User
Posted 02 Jan 2025 at 18:31

Hey Mack-Mack,

HIFU looks an interesting option. It was one I explored as well but was told there was not enough of a focal area detectable in the MRI for it to be effective. This was after having undergone a further higher contrast MRI too.  And yet it turns out there was indeed a focal area (of max 20mm diameter) that they only found in the post-operative histology. Anyway - HIFU does sound worth considering as an option if they deem it suitable for you. I’m sure others on this forum can offer their advice and experiences with that.

The singje port procedure does give comparatively quicker recovery times from what I understand - in terms of being active post surgery, as there are fewer surface wound to heal. But the underlying operation is the same. And the underlying wounds will still take as long to heal. The direction at which the surgeon approaches the prostate appears to have a bearing on continence - in that the retzius sparing method leaves the ligaments involved in continence control there more intact I believe. But it’s not all or nothing. A lot more will be dependent on the nature of your surgery in the first place (which is determined by how much the disease has progressed), as well as your own anatomy and the skill of your surgical team.

It’s a lot to think about. The posts on this forum are full of people going through the same questions. And questions to which there’s no simple answers.

Good luck in your research and speaking with consultants. And do post your thoughts and discoveries here too. 

 

Edited by member 02 Jan 2025 at 19:19  | Reason: Corrected a mistake

User
Posted 03 Jan 2025 at 08:52

Hi Mack

There are a lot of very useful replies on this thread, so I wont repeat lots of stuff that has already been said. I am in a similar situation to Adrian, in that I tried AS and it didn't work for me. I was originally diagnosed as T2, nicely contained within the gland, G3+4=7. 10 months later I was T3a as it had broken out of the capsule, and they found tertiary pattern 5 as well.

The main thing I would advise, is don't be so scared of the side effects if you elect to have radical treatment. I had surgery last July. Ok, I now suffer with ED and incontinence, but you know what?, you get used to it, and the stress it causes is far less than the stress of living with that ticking time bomb down there.

I am not saying don't stay on AS, as that may be a perfectly sound option for you if monitored closely. Just don't write off radical treatment for fear of the side effects. As I keep telling myself, you have to be alive to pee yourself! The ED is frustrating, but I have a meeting with my consultant this afternoon, and he is confident he can help with this by referring me to discuss "some form of mechanical intervention". A spontaneous leg over may be a thing of the past, but hey ho, I'm not 18 any more.

Good luck with whatever you decide mate.

Ian.

User
Posted 03 Jan 2025 at 19:28

Hi Mack,

I’ve been on AS for six years and have been really happy with it. I was diagnosed at 56 and, like you, wasn’t keen on the potential side effects of treatment. For context, I was 4+3=7 in one core only on my first biopsy, then 3+3=6 in one core on my second a year later. I’ve had a PSA test every three months since December 2018 and an MRI every two years. My PSA is currently 2.4. My latest scan has shown a new lesion which has worried the radiologist, so I’ve had a biopsy today. Depending on the results, I’ll either carry on with AS or opt for treatment. My position is while I’m comfortable with risk, there may come a stage when I’m not if and when the cancer develops and the balance starts to tip. But I’ve had a great six years; basically the same as it ever was, to the point where I’d almost forgotten I had cancer and was a little shocked when I got a call about the scan. If you can handle the mental side, I’d say it’s well worth doing. It’s given me time to assess my situation and get used to the idea that I may need treatment at a future date. Best of luck. 

User
Posted 03 Jan 2025 at 23:20

Hi Mack

It can be initially overwhelming and sometimes you just wish the doctors would tell you what you should do rather then leave it up to you decide which treatment to go for.  I think by going on Active Surveillance (AS) it gives you some time to process all the information that you're initially bombarded with and to investigate which options are right for you. I was fortunate enough to be on AS for 6 years before my cancer progressed to stage 2.  I then chose to have a surgery rather than radiotherapy 6 months ago.  For me, surgery felt like the right option and even during my first few months of recovery when I was incontinent and quite down about it all  I never felt that I had made the wrong decision. The side effects can initially be daunting  but they can be managed and there are several treatments out there that can help with them.  I'm still suffering from ED but I know it is still early days for this side effect to improve significantly.

I wish you all the best.

Paul

User
Posted 05 Jan 2025 at 18:55

Hi David,

 

Thank you for your input  and sharing - It's now been just a month on from the diagnosis.

I am still in a state of ''shock'' .

In the meantime I have decided to stay with the Active Surveillance - as I just cant get my head around the side effects of the various ''treatments''.

Even though the cancer is small and I quote, from two extracts from the Oncologists letter to me.

" the biopsies showed very tiny specs of low-grade prostate cancer" ... 'This truly is a tiny amount of prostate cancer"

Why would a prostatectomy even be mentioned as a treatment option?

This has really messed with my head .

Some days are better than others as I try to come to terms with the diagnosis - and it all been made ''more difficult'', as I do not have any symptoms and do not feel ill/ sick.

Trying to be brave ,

Regards

 

Mack

 

 

 

 

 

 

User
Posted 05 Jan 2025 at 19:54

Mack,

That letter from your Oncologist is a very compelling letter for doing AS. It is really encouraging to see him put that down. You must remember he is obliged to share with you the other options including the prostatectomy especially with a Gleason 7, but that is because AS mentally for some people have a hard time wrapping around leaving “cancer” inside and want and demand the surgery and AS for a Gleason 7 (3+4) favorable is really going to depend on the totality of the results of everything. I did AS or called watchful waiting with another cancer 20 years ago while being monitored and after two years I had to pull the trigger and have chemotherapy. I very much enjoyed my additional two years of non side effects but at times it was difficult knowing my cancer was inside. Again it must be emphasized to follow AS protocol with PSA’s, MRI’s and biopsies as required.

User
Posted 05 Jan 2025 at 20:38

I think part of Mack’s dilemma is one of the oncologist met said if you were my son, father partner I would recommend surgery. This was followed by AS and radiotherapy. I think this conflicting info/ advice would lead to many people feeling very conflicted when trying to reach an informed decision.

User
Posted 05 Jan 2025 at 22:42

IDK2

That would be confusing, but the oncologist sure seems to want to minimize the cancer in the letter. I am actually surprised that he used the words “this truly is a little amount of cancer” in a follow up sentence trying to reinforce his first statement regarding the finding of tiny specs of low grade cancer, although I often think low grade is just Gleason 6. I wonder if there is the availability for Mack of genomic testing such as Decipher or the urine test ExoDx to see how aggressive the cancer is. Maybe the Oncologist is limited by the bureaucracy to recommend AS to divert and delay patients for treatment for as long as possible whether it truly is in their best interest and by his statement that if it was his family he would seek treatment he is expressing his actual view as opposed to what he was supposed to say in that highly directed letter which would point to AS. Maybe it’s time for a second opinion.

User
Posted 06 Jan 2025 at 06:48

Hi Ned

I am not sure the tests you suggest are routinely available on the NHS. Yes I agree the Oncologist written report is unusually written and I do not know if the two oncologist Mack refers to are the same person. 
The real bummer is that the only way to know the true extent or otherwise of the disease is to have a pathologist examine the prostate after removal, the very thing trying to be avoided. 

User
Posted 11 Jan 2025 at 23:48
Hi Ned, IDK2 and others

I see you mentioning the Decipher and Exo Dx tests.

I am looking into this - but to be perfectly honest - I'm not sure if I want to know how aggressive the cancer could be.

Actually - It is one of the few regrets in my life that I had a PSA test -

The last 3 months (From the result of the PSA test - to the diagnosis),have been a mental journey to hell and back a 100 times a day.

Strangely enough its not the cancer as such that Im scared of - its the 'treatment' and side effects - that are terrifying me into a state where I find it difficult to function on a day to day basis.

I was not doing too badly, but a work colleague has been diagnosed with stage 4 colon cancer (Tuesday this past week), and this frightened the hell out of me. I see her ''dying'' in front of. my eyes. My colleague is still coming into work as she is on a waiting list for chemo. However she is in tremendous pain and discomfort - she has become a mere shadow of her former self in a few weeks.

It really does bring home the reality of cancer - 'home'.

Thank you for all the support

Mack Mack

User
Posted 11 Jan 2025 at 23:49
Hi Ned, IDK2 and others

I see you mentioning the Decipher and Exo Dx tests.

I am looking into this - but to be perfectly honest - I'm not sure if I want to know how aggressive the cancer could be.

Actually - It is one of the few regrets in my life that I had a PSA test -

The last 3 months (From the result of the PSA test - to the diagnosis),have been a mental journey to hell and back a 100 times a day.

Strangely enough its not the cancer as such that Im scared of - its the 'treatment' and side effects - that are terrifying me into a state where I find it difficult to function on a day to day basis.

I was not doing too badly, but a work colleague has been diagnosed with stage 4 colon cancer (Tuesday this past week), and this frightened the hell out of me. I see her ''dying'' in front of. my eyes. My colleague is still coming into work as she is on a waiting list for chemo. However she is in tremendous pain and discomfort - she has become a mere shadow of her former self in a few weeks.

It really does bring home the reality of cancer - 'home'.

Thank you for all the support

Mack Mack

User
Posted 11 Jan 2025 at 23:51
Hi

Does anyone know or has first hand experience of Immunotherapy?

Thanks in advance

Mack Mack

User
Posted 12 Jan 2025 at 00:24

Now then mate.

I might be wrong, but I think immunotherapy is only used on those with incurable prostate cancer.

I'm sad to see that the thought of radical treatments and their possible side effects are impacting you so badly, Mack. Honestly they are not that bad, mate.

You also can't really compare a type of cancer to a different type of cancer. 

If I had to have a cancer, prostate cancer would be near the top of my list.

 

Edited by member 12 Jan 2025 at 00:26  | Reason: Typo

User
Posted 12 Jan 2025 at 08:09

Hi Adrian

I just can't get my head around the radical treatments.

What am I missing? 

What am I not seeing?

What specifically is not so bad?

I can't see myself working in my current field - if I am incontinent or have issues with wetting my self.

- I work in the food industry

I can't see how having sex without an erection works - I've tried researching - but get answers like

Climaxing with a flacid penis or vagina stuffing - neither of which appeal to be honest

Cuddling - f*** - does not every man cuddle with his wife as a standard

- Mentally - I know I cant handle the hormone therapies

I just need it all to end

Sorry - 

 

User
Posted 12 Jan 2025 at 08:14
What do I not understand

User
Posted 12 Jan 2025 at 08:22

Dear Mack

 

i am sorry you are finding this so difficult but it is not surprising as there is so much to get your head around. Many men on this forum have found counselling very helpful and this may be something you would benefit from too. I know that many of these same men thought counselling was not for them but having given it a go found it enormously beneficial.Sometimes when our anxiety is very heightened it does not matter what further info we obtain about the cause of our  concern the anxiety does not go away because we still focus on the uncertainties  as rarely can we provided with absolutes. Hopefully some counselling will allow your mind to stand still long enough for you to make more sense of things.

Edited by member 12 Jan 2025 at 08:25  | Reason: Not specified

User
Posted 12 Jan 2025 at 08:44

Mate, not everyone gets side effects. This forum is used mainly by people who've had problems with the disease, treatments and side effects. They'll be thousands of men, who'll we'll  never hear from, that get through treatment relatively unscathed.

Of course there may be difficulties, but if there are, you gradually adapt to them. You could look at it another way, and ask yourself, if they deem treatment is necessary. What are the alternatives. To me, the risks and side effects of doing nothing are far worse.

I'm sure that in the past you'll have successfully dealt with adversity, this is just another challenge, mate. 

Remember, worrying about about things that may never happen only spoils today and will not affect what happens tomorrow.

I wish I could have a pint and a natter with you, perhaps I'd be able to reassure you better. Actually it's one of the reasons I started the thread A place for a chat. It's an area, like a virtual pub, where blokes just have a general chat. It's less formal than communicating on specific cancer related conversations. There's a great bunch of lads who regularly pop in, all with different degrees of the disease, and discuss life after treatment. The banter is fab and we often laugh in the face of adversity. You'd be made very welcome.

https://community.prostatecanceruk.org/posts/t30284-A-place-to-have-a-chat

 

Of course you could also go for counselling or go to face to face support groups. That sort of help has never been my cup of tea but it suits many.

 

Edited by member 12 Jan 2025 at 10:58  | Reason: Additional text

 
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