Help don't know what to do

Hello Dj manic 

Another welcome to our little part of the online Community. As I said in my post in "New to the Community" the same question had been asked the other day and here's a link to that thread.

 Just been diagnosed 

i am sure others will be along with advice and their personal stories. (You can read people's journeys if they have updated their profile by clicking on their name or avatar - mine is available to read).

Feel free to join in any thread and ask any questions, however trivial - you will get answers.

Best wishes - Brian.

Hi Manic 

If you give some stats it can help with advice, IE last few Psa's, Gleeson, staging or what the MRI shows.

Regards 

Steve

Hi Dj manic

Sorry to see that you have joined this community, but a warm welcome on board anyway.  

The choice that you have is very difficult, and ultimately the decision is a personal one.  However, as Grundo mentions, providing more information (the more detailed the better) will help others on this forum to help you. 

Best wishes, Peroni. 

Hey DJ, Never great news but the fact that they re offering surgery suggests they caught it early. I had a robotic prostatectomy just before Christmas and now at the start of March it's had hardly any impact. the first 2 weeks with a catheter were uncomfortable but not unbearable and once removed quickly forgotten about. There was little to no pain from the start although I couldn't sit down hard for a few weeks. I'm now running, cycling and skiing with no change or leakage. This is of course different for everyone but from what I understand a good mindset goes a long way as does going into surgery as fit as possible. There will be an adjustment period but is successful you can live a pretty normal life afterwards. I was told that radiotherapy would impact my sexual life more than prostatectomy and wanted to still be active in that department. I have had to be patient here as I'm probably only 60/70% of where I was (I had nerve sparing) and lost some size although a pump has started to help there as well.

Ultimately you roll the dice a bit but asking people is the best idea and finding a consultant who shows an interest in who you are as a person is key. It's all scary but go into this knowing that you are on a road to long term better heath and celebrate it what you have rather than what you may loose. 

Hi DJ manic

New on the forum but saw your post which made me think of me. So everyone is different in their journey…

I had Gleason 3+4 and was offered similar. With this Gleason score the decision process can be overpowering, so don’t underestimate how much it can consume you. I took 9 months and now regret my choice.

If you select prostatectomy then you would be following my path and that of many others. 7 weeks ago I had my surgery and have been in debilitating excruciating pain ever since, and I’m sick of the lack of support from the medical profession because as far as they’re concerned, they’ve cured the cancer. I’ve had much better advice from Prostatecancer.org nurses pre and post surgery too. Like macmillan they help because at least you can speak to someone who’s had the same conversation before.

Apparently I’m an anomaly, as this isn’t one of your normal side effects so feel free to ignore my experience! Everyone at my local prostate support group has had a much better recovery. I’m still totally urine incontinent and cant do pelvic floor exercises due to the pain. I can’t put a positive spin on this but as stats go, the norm would be either RARP or active surveillance I guess.

Good luck with your choice, if you’re fit and healthy the advice is usually RARP. Like me.

Cheers Gedster

Hi Gedster thank you for your wise words.  I am still thinking on best course I got a bit put off by surgery.  I wish you well in your recovery  

Hello Gedster 

A warm welcome to the Macmillan Online Prostate Community - although I am so sorry to find you here under these circumstances. I am Brian one of the Community Champions here at Macmillan. I am in the 4th year of my Prostate Cancer journey and still own about 95% of my Prostate.

You have had a rough time after surgery  - I take it from your post that you are not receiving the right amount of support - if you don't mind can I suggest the following:

* As the pain and incontinence is the result of the surgery are the team at your hospital not helping with the recovery and pain relief?

* Is your GP taking any involvement in your recovery process?

* Do you have a "Maggie's" near you - this is a cancer support and information charity - they may be able to help and support you, details here  - Maggie's

* Our specialist nurses may be able to help - feel free to ask them anything - again here's a link - Ask a Nurse. 

* Please feel free to call our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week). they have access to resources and information and may be able to help.

I hope this helps, if I can do anything else you you please don't hesitate to contact me.

Best wishes - Brian.

Thank you for  your kind words . It's a difficult  time for all of us. Thank you for help

Thank you for your reply.  I have a3+4=7 gleason  a T3a right posterior  bulging tumour.  Plus scattering  of cancer on left side of prostate. I am still making my mind up what treatment  to take thank you for your help

Hi , I was diagnosed with pc last march also 3+4=7 t3a mo no 5.7psa had hormone treatment and radiotherapy in remission now on remote monitoring with first psa of 0.01 very happy I went down the ht and rt route take catpaul