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Glad I made the right choice

User
Posted 24 Apr 2019 at 14:49

I had good news today, I saw my Consultant for the first time since my robotic prostatectomy in February, at the Royal Hallamshire Hospital in Sheffield, I was a day case which surprised me, but this did me the world of good.

I had been diagnosed in December 2018 as T2 Gleason score 7 (3+4), PSA of 5.2, I am 56 yrs old.

I have had annual PSA tests since 2011 when I discovered, through my sister, that I had the BRACA 1 gene, therefore I had a greater chance of having prostate cancer, hence the annual tests.

So today I was informed that my PSA was 0.004, the staging and Gleason score were as the initial scans and biopsy, and the margins were negative.

I'm also on top of my continence issues, after 6 weeks post op I wear only a thin pad, as a comfort blanket more than anything. I put this down to the quality of the surgery and pelvic floor muscle exercises. My advice to anyone is to start these as soon as you are diagnosed. I know they don't work for everyone but don't give up on them.

As far as ED is concerned, nothing stirs, but I await an appointment to the ED clinic, so lets see what happens.

I'm glad I made the choice in having robotic surgery, it has worked out well for me so far.

Whilst I will never be complacent, this is a disease that must be respected, and there is along way to go, who knows what the future may bring, I hope that this outcome will let you know that there can be good news following treatment and I wish everyone who has been diagnosed and their loved ones, without who getting through this would be all the more difficult, all the very best.

 

User
Posted 24 Apr 2019 at 17:25
Hi Peelie,

Looks like you have got a result. The billion-pound super-hospital where my PSA samples go only test to 0.1, and anything less than that is classed as undetectable.

Even the premier cancer hospital in Britain, The Royal Marsden, only tests to 0.04, so don’t get fixated on multiple decimal points.

Look up super-sensitive assay for PSA for more information and opinions. The consultants I have seen (3) concur that 0.1 is OK, 0.04 is better, but anything with more noughts than that is pointless and more worrisome than what it’s worth.

Hope you are sorted now, and ask for Cialis / Tadalafil 5mg daily to see if that can put some lead back into your pencil.

Best of luck!

Cheers, John.

User
Posted 24 Apr 2019 at 17:42

Whilst you are waiting for the ED appointment, look up penile rehabilitation. You are at the stage where it's really important, and you don't want to wait before getting that going. Ask your consultant or GP for Cialis / Tadalafil 5mg daily while nothing stirs naturally. (They might not supply it - it's expensive, but nothing to lose by asking.)

User
Posted 24 Apr 2019 at 18:16
That is great news and I hope you got all the cancer. Not so great in my case at all at 51 , but I want to reassure you that life can get completely back to normal ok. It may take 2 to 3 yrs but if you’re lucky you will be fully recovered and time will pass sooner than you think. Get a pump and use it every single day if only for 15 minutes. Blend it in to your daily routine. Fight for daily Cialis if you had nerve sparing surgery. Don’t give in as if you keep him healthy artificially you will reap the benefits when he’s ready. Good luck

If life gives you lemons , then make lemonade

User
Posted 24 Apr 2019 at 18:40

hi

see my profile. still improving after 4 years and I had non nerve saving.

pelvic exercises must have made a huge difference. 

totally agree with Chris .  keep exercising  ........

may I ask 3 questions 

1. No overnight stay at all .  blimey.  when did you get told that. 

2 . did you pay for a braca gene test ?

3. what precipated decision for biopsy?  I'm assuming you had only the 1.

.  was that decision very easy ?

all the very best

 

 

 

 

User
Posted 25 Apr 2019 at 07:32

Thanks for your replies, getting the results was such a relief.

in reply to your questions robgsr

The day case was down to the surgeon, it’s not everyday he does this, it’s down to the age and general well-being/fitness of the patient and ultimately down to the anesthetist on the day of the op. I’m so glad I got to go home on the same day, I makes a huge difference. Having said that we’re all individuals, what works for one may not for the other 

I didn’t pay for the gene test, my sister discovered she had the gene after she was diagnosed with ovarian cancer. This led me to being referred by my GP to the genetic research facility in Sheffield. 

This has also led to my daughter having the test, she too has the gene, and bless her, after my sister died she took the decision to have a double mastectomy.

The way I see it is my sister gave me a golden ticket, I would never have the regular PSA test if it wasn’t for her.

As for the biopsy, my PSA was elevated to 5.2, the second test reduced to 4.2, the DRE showed no abnormality. I was referred to urology and had a scan, which showed an area of concern which led to the biopsy.

Thanks for your advice on the ED issues I’ll get on it straight away.

 

User
Posted 25 Apr 2019 at 07:35
Hi Peelie

Glad to here all went well.

We are the same age and very similar diagnose and treatment. At six weeks ish my recovery was also the same. I gave the pads up completely at about 7 weeks but continue with the pfe even now.

On the ED front I had nerves spared only on one side and after over two years things are still improving. I must reiterate what has been said above. Work hard on rehabilitation and getting a pump is crucial. If you can't get one through your ED nurse the cheap ones available on line will do the job. I got mine from Amazon originally but now have a somaerect.

Also I started on 100 mg viagra every other day at about six weeks but more recently have 5mg daily cialis but still top up with about 75mg Viagra for a boost when required. I also recently tried MUSE with little to no effect and Caverject which varied between 5mcg giving me a 6.5 hour painful erection to 2.5mcg lasting about 2 hours.

All the best for your ongoing recovery

Cheers

Bill

User
Posted 25 Apr 2019 at 10:29
Thanks, was the viagra and other medication prescribed by your GP or through an ED clinic.

I'm waiting for an ED clinic appointment, should I go straight to the GP?

User
Posted 25 Apr 2019 at 11:23
Ask your GP for daily Cialis. They might say yes or might say no. Viagra made me nauseous.

cheers, John.

User
Posted 25 Apr 2019 at 12:26

Ultimately it's up to your GP, and whether that health area will pay for it or not.

In my case, my GP put me on 5mg daily tadalafil the moment I started HT. (He has some other patients further along the path, and is well aware of some of the implications of HT.) He also offered to refer me to ED clinic, but said as I had nothing wrong at that point, I would get a faster appointment if it was referred through Urology.

It was a few months later when the ED clinic appointment came through (organised by Macmillan nurses, in response to future ED being a high concern on my Holistic Needs Assessment).

The ED nurse saw my GP already put me on tadalafil, and commented on what a good GP I had. She would have asked the GP to prescribe it if he hadn't already done so, but commented that some GP's won't do it, even when asked to by ED consultant.

So I think the normal path is ED clinic asks GP to prescribe it, but your GP might be prepared to jump the gun. So if you can see the GP before the ED clinic, ask the GP to prescribe it. They might say no, or they might say they need the hospital to OK it first, but you have nothing to lose.

User
Posted 25 Apr 2019 at 19:47
And you need to know whether there actually is an ED clinic or andrology service in your area - not all CCGs provide that service.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Apr 2019 at 21:30

Originally Posted by: Online Community Member
Thanks, was the viagra and other medication prescribed by your GP or through an ED clinic.
I'm waiting for an ED clinic appointment, should I go straight to the GP?

Sorry I can't help with that, I'm not in the UK  but  I am in GB. Your system is different. I think the posts above answer your questions

Cheers

Bill

User
Posted 25 Apr 2019 at 21:33

Hi Peelie

if going for tadalafil 5mg daily, please ask for Gastro Resistant capsules called Lansoprazole, they help to combat acid reflux 

cheers Andy63

User
Posted 26 Apr 2019 at 07:27
Thanks for all your help and guidance.

The ED Clinic is organised the consultant and is held at the hospital.

I spoke the Specialist Nurse in Urology yesterday and she advised asking the GP so I’ll try to get an appointment today.

 
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