Bit of a mental wreck!

User

Posted 06 May 2024 at 10:00

Hello Everyone,

I joined the site yesterday so thought I’d give a proper introduction. I’m 55 years old and having never had any sort of prostate check decided last autumn to ask the GP for a PSA test; I didn’t have any symptoms at the time. Long story short, PSA was 6.5, Gleason 4+3 with cribiform(?), T2c and a MDT recommendation on RARP. I had nerve-sparing surgery on 13th April.

Everything seems to be healing fine although I’m still very tired. Incontinence wise, I’m basically dry during the night and whilst sitting down but leaking whilst I’m up and about. I’m using a couple of pads per day. Sexually I don’t have a lot of libido or spontaneous activity (might be my age!) but a couple of days ago did try masturbating and fairly remarkably managed to get a reasonable erection and reach orgasm. I was quite fit when I went into the surgery and this has probably helped such that physically I’m probably doing as well as can be expected for 3 weeks post surgery.

Mentally and emotionally though I am struggling. Bit of backstory, I met my partner 29 years ago, however 13 years ago he had a cardiac arrest and ended up in a nursing home with a hypoxic brain injury. I visited him most days for the last 13 years until he finally passed away at the end of August last year. Add to that, one of our two oldest friends who we’ve known for about 27 years died from lung cancer in a hospice about a month ago and his funeral was Friday just gone. My work are being very supportive and I’m dipping back in mainly to provide some distraction and routine but also because I do like and enjoy the work that I do.

So all in all it’s been a bit of a s**t few months and although I’m trying to remain positive I have just about run out of mental and emotional energy.

Thanks for reading this far. x

User

Posted 08 May 2024 at 01:39

Hello Edward,

There are a couple of LGBTQ+ prostate cancer support groups; one in South London, and the other in Manchester, although they both do meetings on Zoom.
London: Metro Walnut
Manchester: Out with Prostate Cancer

They both meet first Saturday of the month on Zoom, so you can only do one or the other on Zoom! The London one is Zoom only (with an in-person meeting on 3rd Sat of the month) and the Manchester one is hybrid - both Zoom and in-person.

User

Posted 05 Aug 2024 at 18:34

Thanks for the update Edward and pleased things are going well with you. I think you’re making good progress compared to some of the guys I know!😊

I can’t remember what the advice on starting penile rehab after surgery is, but as soon as you’re given the AllClear from the surgeon I would start pumping(using a vacuum pump🤣🤣🤣), especially if you have to wait a while for an appointment at the Ed clinic. You can buy a vacum pump from eBay or somewhere like Lovehoney and some of them are fine for this.

Onwards and Upwards!😉😉

Derek

User

Posted 05 Aug 2024 at 18:49

I will second what Decho said. Don't wait for that appointment buy a decent a pump and if you get the ok make a start. Actually having a 50% errection at this point following RP I would definitely take. It's taken me nearly two years of pumping, tablets and sex to get things back to 90% of where I was. So you are doing good.

User

Posted 05 Aug 2024 at 19:23

Thanks guys. I have actually got a Somatherapy pump which came via prescription a few weeks ago. I think it must have come from the hospital clinic when they got the referral which is excellent. I’ve been using it every few days or so although my libido is still very low and the effect only lasts as long as the vacuum. I know it’s good for maintaining health until the natural processes hopefully return so I’m definitely persevering. I’m also on 5mg daily dose of Tadalafil so there’s probably not much more that can be done at this stage anyway.

User

Posted 05 Aug 2024 at 22:16

You are going to be ok then. Sounds like you have a very proactive support team. I was recommended using the pump every day. Hated it in the end, but necessary.

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User

Posted 06 May 2024 at 13:51

Hello,

You have been through a lot and having to deal with cancer is the icing on the cake as it were.

I was not too far off your position to be honest (similar age, fitness and scores), unexpected deaths of parents and loss of close friends. A wife who needed increasing care. It's all quite a shock to the system. I did find talking to Macmillan nurses to be useful, keeping as busy as possible, setting goals all seemed to help. Does not mean the pangs don't go away but at least it keeps them in background.

Recovery takes time it's taken me 18 months for me to get more spontaneous erections. I was continent within a month but we are all different. Again might be worth talking to the prostate cancer nurses on here for any advice

User

Posted 06 May 2024 at 14:44

Hi Jim,

Many thanks for the reply and thoughts. I have been having a few online counselling sessions through Macmillan but although they are helpful the number of sessions is understandably very limited. I think your advice is very sound and part of my problem is that I really don’t have any direction, let alone goals at the moment! My life has changed so abruptly that I haven’t had the time or space to think about what’s next.

Thanks

User

Posted 07 May 2024 at 12:24

Hi Edward,

Have you thought about joining a support group such as Maggies? It has made a HUGE difference to the way I’ve coped with this disease. Counselling I’m sure is good but TBH the support and advice from fellow PCa(and other cancers) men invaluable…they just get it!

all the best,

Derek

User

Posted 07 May 2024 at 21:39

Hello Derek,

I have and am going to go to a PCa drop-in session at the Macmillan Centre in Bristol in a couple of weeks time. I must admit that I’m not keen on the idea of group sessions but probably need all the support that I can get, and I think that you’re probably correct that support and advice from other PCa men will probably complement the counselling.

Many thanks

User

Posted 07 May 2024 at 22:08

Edward, if it’s any help I thought the same as you and it took my wife 9 months to persuade me to go with her along to Maggies. We met a lovely counsellor who spent a lot of time with us and suggested I try the men’s Cancer Support Group. I wasn’t keen but decided to give it a go….and have never looked back. I didn’t want to open up and tell others about my cancer and feelings, but even in the first session I found myself telling the group about my cancer and the other issues going on in my family life at the time. The support I got was amazing and I came away from the meeting feeling so much better….and I get that feeling every time I go. I’ve made so many good friends in the group as well and we regularly meet outside of Maggies.

I agree it’s not for everybody but I think it’s well worth giving it a go.

Derek

User

Posted 08 May 2024 at 01:39

Hello Edward,

User

Posted 08 May 2024 at 13:26

@Decho: Thanks Derek. I suspect in common with everyone here, over the last few weeks I become very used to talking about personal subjects that I wouldn’t have dreamed of talking about just a few months ago. I have a couple of friends with whom I can discuss most things but have another safe space with men who in similar circumstances I’m sure will help. Thanks.

@Andy62: Many thanks. I wasn’t aware of these and might try one of them. Thanks again.

This is a great forum x

User

Posted 05 Aug 2024 at 18:20

I haven’t been on site for a while so thought I’d provide an update.

I’m now 14 weeks post-RP; the good news is that the histology has come back with a clear margin and my PSA is undetectable. However my Gleason Score was reassessed upwards from 7 to 9. Thankfully I don’t currently need any further treatment so a going onto active monitoring.

My urinary incontinence is about 95% better with leakage now usually confined to occasional stress leakage. Erectile function is back to about 50%; everything sort of works but certainly not well enough for intercourse at the moment. Orgasms so far are also pretty disappointing. I’ve been referred to andrology but am still on the waiting list until probably Sometime September.

Overall given the starting points of Gleason 9 and stage 2c, I’m probably doing about as well as I can possibly expect. x

Edited by member 05 Aug 2024 at 18:29 | Reason: Not specified

User

Posted 05 Aug 2024 at 18:34

Thanks for the update Edward and pleased things are going well with you. I think you’re making good progress compared to some of the guys I know!😊

Onwards and Upwards!😉😉

Derek

User

Posted 05 Aug 2024 at 18:49

User

Posted 05 Aug 2024 at 19:23

User

Posted 05 Aug 2024 at 22:16

You are going to be ok then. Sounds like you have a very proactive support team. I was recommended using the pump every day. Hated it in the end, but necessary.

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