Does this happen to 45 year olds...?

User

Posted 16 Apr 2021 at 15:37

I am 45 years old, run regularly, not had a massively exuberant lifestyle and would consider myself relatively fit!

Yesterday (15/04/2021), I was told I had Stage 3 Prostate Cancer. Not the best Thursday that I have ever had! However, wanted to share my experience and with that this is my back story to this recent journey....

I have always been a 'shy pee'er' and it was always a standing joke when at the urinals with my mates as not to speak to me or I couldn't start the flow, I thought nothing of it...it was what it was. In February time this year I started to notice that I needed to go pee as a matter of urgency, I would open a video conference thinking 'it is a 2 out of 10, I can hold for 30 minutes' and then within 5 minutes my bladder was telling me something different, I had to go and I had to go NOW. Camera got turned off and I legged it to the loo (missing half of the conversation from the call, hey ho). This continued for a couple of weeks and it started to play on my mind. An associate (now considered a life friend as I owe him so much) of mine had been diagnosed and successfully treated last year and he had told me that it was the peeing in the night that made him get checked...and with that a call to the Doc's.

Nurse took my bloods on the Wednesday, call from GP on the following Tuesday (PSA results higher than expected - 18.1), Consultant appointment on the Friday. The speed was amazing, this dedicated team of people knew what they were seeing and they were investigating as quickly as they could.

In my first exam the Consultant checked around my groin, penis and belly and then did a quick rectal exam (no dinner, flowers or even an offer of a drink). In fairness really easy and quick with little discomfort. After getting sorted from off the bed, I sat down and he informed me that he could feel a hard 'knuckle like' on my Prostate and it is a 50/50 of it being Cancer. So....the investigative journey continued. Within 2 weeks I had an MRI scan, results followed a week and a bit later (PiRad score of a 5...I had to Google it) and a Biopsy was booked in. Again near 2 weeks later, Biopsy was completed (happy to share my experience of this if you want to contact me directly) with the Friday being the bone scan. Then I waited for the call to get me back into see the Consultant.

2 and half weeks later and it is 12:00 on Thursday 15th April 2021 with me sitting in the Urology Dept Doctors room....whats it going to be?

Positive news....not in the bones (I well up even now writing this) or surrounding organs as far as they can see. A Gresham score of 7 (3+4), Stage 3 and basically there was a little bit on the left hand side of the Prostate that did not have any cancerous cells in it.

Radiotherapy is not really an option for me I was being told, removal of the complete Prostate and surrounding fat (rude!) needs to be done. What does this mean to me for the future....an amazing result in regards to getting rid of the cancer and having minimal further issues, down side being some short term incontinence (that I can live with...Tena Man was created just for that reason) and erectile challenges (once again, there is always Viagra or some other wonder drug/injection/pump etc).

Both Consultant and Urology nurse were amazing...truly amazing!

However....I walked out of there feeling mentally exhausted, deflated, frustrated, confused and generally beaten up. If you are or have been through this or a similar experience you will understand that rollercoaster of emotions, they are all unique to us...but those were mine.

24 hours later and I am feeling much more positive, the NHS team found it relatively early, the NHS team have me booked in for the 14th May 2021 for the op, the NHS team are ready to answer any questions that I have and my family and friend team are ready to help me through this.

So I go back to my 'Conversation Title'...Does this happen to 45 year olds? Yes it does and younger, after reading some posts on here, and it is all about spreading the news. I am happy to share my journey of why I thought something was not quite right with my waterworks (last I understood we all have to pee) and by asking my Doc to get me checked out (the thought of rectal is far worse than the actual btw) in the hope that at least one other man captures things early or even better gets confirmation that there is nothing there.

I am massively fortunate in that I have someone that has been through a similar journey very recently and we talk regularly (we share our experiences around rectal exams, scans and results all very openly) and it helps so much.

As I write this, in 28 days I will be on the other side of this (minus a Prostate and a bit of fat) and in recovery mode. Here is looking forward...

Best wishes to all :-)

User

Posted 16 Apr 2021 at 16:30

Sorry to hear about your diagnosis, but at least you're being treated with curative intent, and you've got your dates all sorted. Very best wishes for your surgery!

Chris

User

Posted 17 Apr 2021 at 01:50

I hope you don't need it but you should be aware that quite a number of men either need RT to augment Prostatectomy, if there is some doubt about all the cancer having been removed or there is a recurrence in due course.

Barry

User

Posted 17 Apr 2021 at 15:58

"What does this mean to me for the future....an amazing result in regards to getting rid of the cancer and having minimal further issues, down side being some short term incontinence (that I can live with...Tena Man was created just for that reason) and erectile challenges (once again, there is always Viagra or some other wonder drug/injection/pump etc)."

Positivity is a good thing but needs to be balanced with some reality so do make sure you read up on it properly beforehand. The side effects of RP are not minimal; they can be life changing for a significant proportion if men. 10% are left with permanent incontinence and at least 10% never have an erection again. Around 60% regain natural erections. Being young of age tends not to have any impact on this but with a stage 3 cancer (which is not an early diagnosis) your risk of long term side effects and recurrence are higher. Most men come to a view that the side effects are better than dying of prostate cancer but those who go into treatment understanding the risks tend to do much better emotionally than those who were over-optimistic or whose surgeon glossed over the less palatable bits.

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

User

Posted 18 Apr 2021 at 11:28

Camino, I was 46 and similar to you. PIRAD 5, Gleason 7 and T3a. After surgery, I was upgraded to Gleason 9 and pT3b.

Are they going for nerve sparing surgery? I knew before surgery I was most likely having non nerve sparing so I knew I'd never recover the capacity to have a natural erection.

I needed salvage RT and HT. I'm currently on the waiting list for a penile implant.

4.5 years have passed since my surgery. I've lost length and girth and can only get an erection with an injection. But, my PSA is <0.006 and life is good.

I have no regrets over my treatment decisions and think the NHS has done a great job.

User

Posted 30 Jun 2021 at 09:29

So here I am again nearly 7 weeks after surgery and I feel great! Yes the surgery was a little rough and put me on my back for a few weeks, however, I listened to the medical team around me and did as I was told (pelvic floors, not lifting anything heavier than a kettle, using the pump etc) and things are getting better every day that passes. I am due my results from the biopsy from the surgery and an updated PSA test (here is hoping for a very low PSA result) tomorrow and feel really positive that they have managed to remove all.

There is one thing that I have learnt from this and that this is very unique to the individual. I tried very hard prior to my surgery to get what my outcome would be from others...this is not the case. If I could go back in time, I would definitely tell myself to stay focussed on what is immediately in front of me and get those pelvic floors nailed!

There are a few comments around nerve saving on here as well....even though I had a Radical Protatsectomy the surgeon managed to save my left nerve :-). At least it something to work upon.

Take care all and remain strong.

User

Posted 30 Jun 2021 at 12:39

Originally Posted by: Online Community Member

This is very true and why I have said on a number of occasions that men should not conclude that because one or more patients have reported a similar experience or outcome with their cancer and treatment, it will be the same for another individual. Nevertheless, it is useful to consider the range of experiences individuals have reported.

Barry

User

Posted 05 Apr 2022 at 16:57

Husband, age 46 is currently in an appointment with the consultant/nurse to get the biopsy pirad 4 results PSA 3.6

i am at home with my newborn baby waiting for him to update me. Worried.

User

Posted 06 Apr 2022 at 00:05

Hello ...

I am 47 so just 2 years older. My Prostrate operation done 2nd of March all seems well so far. Op was a success both nerves spared lucky the Cancer was within the prostrate and had not spread beyond. CT, MRI, PET scan etc al so I count myself lucky.

First 2 weeks catheter got an infection which I am told is very common. I was prescribed antibiotics to clear the UTI after that 3 days the catheter got blocked. At which point I was bypassing simplying meaning I was able to wee on my own whilst catheter was in and blocked. Wee gushing out by the sides rather than the tube due to blockage.

Catheter removed day 13 after surgery. Minor incontinence Tena men thank you! Currently day 34 after surgery now.

ED the big man completely unresponsive but trying to be positive. I feel erection when aroused but nothing going on down there. Stiffens slightly but not sufficient for any action. I have decided to leave things as quite frustrating. Have my first appointment post surgery with consultant in 3 weeks or so.

I will keep you posted and all the best.

So Yes in answer to your question can happen to people in the mid 40s I actually heard of someone who had this early 30s. I have two kids so quite pleased one less thing to worry about.

All the best and question will happily respond to the best of my ability

User

Posted 06 Apr 2022 at 00:11

Casino

Definitely the journeys are never the same. I am 4 weeks after surgery 3 more before report on biopsy , PSA etc so fingers crossed.

Listening to the range of experience give an inclination of what to expect.

I have slight incontinence does this get better by 7 weeks with pelvic PFE and when you say use the PUMP? Confused

All the best with the results.

User

Posted 06 Apr 2022 at 00:36

So please to read this and all the best. How often do you test your PSA levels.

Having my first in 3 weeks and biopsy report in 3 weeks.

User

Posted 13 Jan 2023 at 14:16

Hi All,

I am 46 years old and was very recently diagnosed with prostate cancer. My psa was 4.2 and after an inconclusive mri scan (t2 and Likert score 3) a biopsy revealed that I have a Gleason score of 7 (4 plus 3). I was told that there was no cancer in the lymph nodes or bones from the mri scan. I have been asked to do a PSMA PET scan and have an appointment with a surgeon at the end of this month. I am hoping it hasn’t spread anywhere else. I am worried about the implications of a RP particularly on erectile function and incontinence. I have read that erectile function post op depends on how much of the nerves they can preserve. I usually get good erections and am worried whether I will have complete loss in the future with or without medication. Any advice or support would be greatly appreciated. Thinking of you all and your journeys!

User

Posted 13 Jan 2023 at 20:56

Based on your particular diagnosis your surgeon should have some idea whether he can spare nerves on one side of both sides. However it doesn't always go to plan. My surgeon told me he could only spare the nerves on the left but he managed to spare some of the nerves on the left. A bonus for me but on the downside the prostate histology showed a positive margin. Erections have slowly improved over the months since surgery (with the help of Tadalafil and a vacuum pump). I'm sure there is still room for improvement as time goes on but hormone therapy isn't helping matters at the moment. Continence was slow to return but by about six months post catheter removal I was pretty much dry. I just had to wear a pad if going on long walks. Salvage radiotherapy has messed that up a bit now (hopefully temporarily) but that's another story. You will have probably seen from other posts that the outcomes from a RP are variable and unpredictable but generally speaking they are favourable. You have just got to hope for the best but be prepared for the worst.

User

Posted 14 Jan 2023 at 16:19

Hey All,

Thank you all for your responses which I have found really helpful and supportive. I’m trying to keep positive - it’s a bit of a rollercoaster ride but I have to carry on. Wishing you all the best in your recovery/journey and I’m sure we can all do it and come out on the other side. Take care.

User

Posted 14 Jan 2023 at 20:09

I wish I could give you some guarantees but when it comes to ED having your nerves sparred gives you a better chance of regaining natural erections but not necessarily. I had a RP in September 2022, full nerve sparring but so far no meaningful erections. It's still early days yet so not given up hope.

Yes it's a rollercoaster, but here is the positive based on the information you have given, you are currently on a curative path.

Check my profile if you want to see my journey. You will see that I recovered quickly with few side effects other than ED. But we are all different.

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