booked in to have my prostate removed

User

Posted 30 May 2014 at 16:46

Good afternoon all

I was diagnosed with cancer after my biopsy in April. They said my prostate was very large and had found cancer in 1 of the 12 plugs they took. I then had an MRI scan and bone scan 2 weeks ago. I was called back in today and told the cancer was aggressive and the 2 opinions received said it was breaking through the gland but the second said it was contained. We discussed the options - TURP plus 35 radiation sessions or to take it out. I'm probably booked in for July 15 but waiting to hear to have it removed. In a weird way, I'm quite relaxed about it. Possible complications were explained and I was pretty impressed with the consultant. I look forward to discussions on here!

Best regards

Guy

User

Posted 30 May 2014 at 17:16

Guy

Good luck with the op. Let,s hope it's contained. Remember, it's a major op - even after 1 day I felt really good, and was able to turn in bed effortlessly after a few days. However, give yourself plenty of rest, and if you have a partner, don't feel guilty about resting and having them run around after you.

I felt quite relaxed too. Worry won't do you any good. Stay positive, and make sure you do the things between now and July you enjoy, particularly the kind of things adults like to do together!!!!

Stay Calm And Carry On.

User

Posted 30 May 2014 at 20:32

Can't help with surgery as my husband has opted for Brachytherapy but just wanted to say Welcome to the forum Guy.

They are a very helpful and knowledgeable lot on here!

We can't control the winds - but we can adjust our sails

User

Posted 30 May 2014 at 21:43

Good luck with the op if thats the way you are going,I had mine 12 months ago this July,where the time goes who know's.Hopefully you will look back and think the same.

User

Posted 30 May 2014 at 22:52

Hi Gregory

I had my op 4 weeks ago and after a few minor complications I'm on the mend and getting better day by day. I still feel a bit tired in the evening but my incontinence is becoming more understandable so I now cope better. I'm hoping for improvement in the next couple of weeks. ED shows no sign of improvement yet but I have my fingers crossed.

Like yours my cancer was aggressive and I opted to have it removed. I'm so glad I did and that I'm now on the mend. I have no idea what the future holds but currently I'm in the best possible position I can be in. I hope it is as good for you my friend. Stay positive.

If I had any advice for you right now it would be to get as fit as you can in the time remaining before the operation. In particular start pelvic floor exercises right away. These things will stand you in good stead believe me,

Good luck and kind regards,

Steve

User

Posted 30 May 2014 at 22:57

Hi Guy I had a Robotic Prostatectomy last Sept so far PSA undetectable,only one night in hospitai, no pads 2weeks after catheter removed, some are not so lucky and it can take a few months before they're dry,still got a bit of E/D but things are improving, Glad I went for the op it was the right choice for me,whatever you decide be positive. Best wishes Diesel

User

Posted 09 Jun 2014 at 14:03

next step is physio for incontinence on June 24. My PSA was over 15 so I'm a bit concerned having read somewhere that if it's over 10, you're more than likely to have it elsewhere (even though my MRI and bone scans showed clear) Gleason score was 3+4

User

Posted 27 Jul 2014 at 19:46

Had the open RP on July 11 at Cheltenham. It went well but I had loads of problems afterwards. They sorted me out though and I left hospital the following Wednesday. Had the clips removed last Monday and the catheter on Thursday I'm very nearly dry which is fantastic. - must be the pelvic floor exercises and I was quite fit pre op. I have ED but am seeing the GP on Friday. Will be seeing the surgeon mid august. So far so good. I was very impressed with the care at Cheltenham

User

Posted 27 Jul 2014 at 21:28

Greg

Good news on being dry so soon , it has got to be the worst worry of the journey, I did lots of pelvic floor exercises pre op and post op but I would not describe myself as fit . You do not say if you had nerve sparring but either way the ED may be a longer process, but it can be fun solving it. Hope all goes well in the next few weeks.

Chris

User

Posted 28 Jul 2014 at 00:05

Great news re being dry. I have improved significantly 15 weeks post op, but still some way to go. I'm on Cialis to help nerve repair, but still need to see the GP re a pump following correspondence with Christie's. Absolutely no sign of any movement northwards!

Stay Calm And Carry On.

User

Posted 28 Jul 2014 at 10:39

hi gregorg just wondering where you are from as paul had his op at cheltenham on 9th may

open rp same as you

he also had problems after op and left hospital on the wednesday

11 weeks on is dry

he has his 1st post op psa test tomorrow then sees consultant next tuesday

User

Posted 20 Aug 2014 at 16:36

I'm near Ross-on- Wye Paul

Went to see the consultant yesterday who had the histology report. Good and bad - Gleason was the same 3+4, the cancer was said to be contained but it was very close to the surface with a possible slight breach near the nerves on the right hand side. I'm booked in for a PSA test in 6 weeks and if it's above 0.03, then it looks like radiotherapy. I was a bit shell-shocked when I heard this, so didn't really query why I had to wait 6 weeks. Anyway I rang up the GP after pressure from nearest and dearests and am having a PSA test this Friday. If it's less than 0.03 good, nothing lost, if not I shall go back to the consultant and get things moving asap

User

Posted 20 Aug 2014 at 18:21

He probably wanted you to wait 6 weeks to give your body time to reach its natural nadir. Your test on Friday may be just a little too soon for the specialist to be confident that the result provides a true picture. John's was 0.049 at 7 weeks, 0.045 at 3 months and then fell again to 0.033.

I am surprised that they would consider 0.03 to be the benchmark; it is usually 0.2 or three successive rises. However, with the pathology if you are keen to have RT then hopefully the onco will agree.

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

User

Posted 20 Aug 2014 at 20:25

gregoryg

I had my prostate out April 2014, Gleason 4+3 , the histology reported positive margins, when I researched it there were lots of reasons why it can show positive even if it is not. Had two PSA tests post op both undetectable. Be positive until proved otherwise. I now attend quarterly nurse led clinics and would only see the consultant if I "breached the threshold of 0.1"

Thanks Chris

User

Posted 21 Aug 2014 at 09:17

hope that all goes well with your PSA test

we live in Hereford so are not that far from you

It was 3 months after op that Paul had his 1st Psa test done

think that's the way the consultant works

did you have a copy of the report we asked and got one

all the best

User

Posted 22 Aug 2014 at 10:44

Hi Gregoryg

Your diagnosis seems quite similar to mine. Pre-op I was diagnosed with a Gleason of 3+4. The MRI showed a possible breach of the capsule and a enlarged lymph node.

I had my 6 week follow up after the op a couple of weeks ago. The consultant told me that the Gleason of 3+4 was confirmed, margins were clear as was the lymph nodes. The cancer was beginning to breach the capsule. My PSA he reported as 0 but because of the breach he told me there was an increased risk of the cancer still being there somewhere. I was so relieved about the results that I did not ask him to quantify the increased risk but I will at my next appointment, which is now about 4 weeks away, when I get the results of the next PSA test I will have a few days before the appointment.

I think the six week wait after surgery is quite normal, to allow time for everything to settle down.

Edited by member 22 Aug 2014 at 10:46 | Reason: Not specified

User

Posted 12 Sep 2014 at 15:18

I'm in Hereford to wondering where did you have your?

Malc

User

Posted 15 Sep 2014 at 06:43

Sorry for the slow reply - I had mine done in Cheltenham.

User

Posted 30 Sep 2014 at 17:59

I saw the consultant today - nearing 3 months since the op. PSA was 0.083 down from 0.104 6 weeks ago. He said he'd hoped it would be less than 0.03 and to have another PSA test in 6 weeks. If it hasn't gone down enough, it'll be a short sharp dose of radiation. So plans to go and see my son who lives in Thailand will have to wait a little longer!

User

Posted 02 Dec 2014 at 17:01

well it was "D" day today! I saw the consultant following a blood test last week. My PSA was 0.075 down from 0.083 2 months ago which was down from .104 a month before that

He would like the level to be below 0.03 and thinks there's some residual cancer left.

He's offered me the "RADICALS" trial - basically they split candidates at random into 2 groups. All candidates have had a radical prostatectomy- 1 group start radiotherapy straight away and the other get given it if the PSA level rises only a little bit (or more)

He's arranging an appointment for me to meet a "RADICAL" person

Anyone have any experience of this or comment please?

Best regards

Guy

User

Posted 02 Dec 2014 at 23:15

Guy
The positive is that your PSA is dropping. If you didn't have the super sensitive test you'd be on 3 month tests as it would be reading <0.1.

The Radicals trial is trying to determine if follow up radical treatment for high risk men who have had a RP is the best way forward..That could be RT or RT and HT.

Smaller trials have indicated positive results for adjuvant RT ie RT given after a RP before a recurrance and usually within 6 months of the RP. Of course there can be additional side effects. I consider myself fortunate as the adjuvant RT I had didn't cause me any significant problems.

I would see the oncologist who is running the trial and get an opinion from them.

good luck mate

Bri

User

Posted 03 Dec 2014 at 12:21

well, I've decided against the trial having read the literature as I don't want to risk leaving it and have asked the consultant to book me in for radiotherapy

Best regards

Guy

User

Posted 31 Dec 2014 at 17:32

Well, RT here I come!

I saw the oncologist today and talked through the options. In my case with PSA of 0.075 and Gleason score of 7, the remaining cancer cells are very likely to be in the prostate bed. I could leave it and wait until the Psa goes up but by then it may have travelled elsewhere and RT would be no good. It has to be weighed up against the risks of RT. I've decided to go ahead and will have a CT scan in a week or so followed by six and a half weeks of RT - whoopee!! ( he did say one of the side effects is that I'll probably have permanent ED, but that's better than cancer!

User

Posted 31 Dec 2014 at 23:14

Best of luck fella. Don't look back and wonder. Go for it, and thrive.

Dave

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