Active surveillance - what to do next

Hi, I was 57 last year when I was diagnosed with T2 Gleason 3+5(7) Intermediate Risk.

I was unable to have the surgery so I opted for Hormones and Radiotherapy.

I had been on Active Surveillance for 4 years, then my PSA levels rose to 12.9

Fast forward 18 months, I am now in Remission and don't regret anything.  Counselling really helped me get my mind around everything.  Never being one for talking about my problems before (now I can't stop talking about them).

A monthly Prostate Cancer Support Group at my local Maggie's in Newcastle is very good, with us all having the same thing in common.

There's a great bunch of people here in this forum.

Side effects weren't as bad as some.  But at the time I thought they were bad.  Hot Flushes from the Hormones are still going on.  Getting Acupuncture now and I downgraded them to Warm Flushes.  Fatigue from the Radiation treatment still affects me.

In a way I feel like I am a better person because of the Cancer.

One massive side effect is I can waffle on and on and on...

Thanks Steve for the reply, and glad to hear everything is going in the right direction.  And yes, totally agree it's good to talk!  

Hi

I'm with Steve. I had no choice - it was HT/RT for me too. By far the worst is the HT which, in my case, 12 months after finishing I am still tired, have no strength or stamina and also no libido. That said incontinence has never been an issue and I don't it generally is ( happy to be corrected).

I can't comment on any other of your 'least invasive ' methods other than to say if my understanding of DaVinci is correct I personally would not include it is such a list.

Good luck with your decision.

Stuart

My profile has more detail. My NHS choice was prostatectomy (DaVinci) or low dose rate (ldr) brachytherapy.  I researched less invasive treatment and had some Hifu treatment for two lesions at end of October,  recovery was very quick not to different (except catheter for 5 days) to a biopsy.

Then today I read in a prostate cancer research newsletter of research that found 'it maybe better to treat whole prostate' rather than areas that have cancer.  Oops, maybe next time I'll just have it out.

Research what is best for you, check what treatments are available on your NHS, listen to the professionals and stay positive.

Hello , my lovely 57 year old husband had radical prostatectomy da Vinci in July , was worried about the side effects … the incontinance is almost zero now but the erectile dis function ….he is so depressed , we don’t have a Maggies centre nearby . He was given a pump and some rings but has no help - our gp won’t give him a prescription for rings. His last PSA was 2.0 which he worries about , he can’t have radiotherapy because of PSC and U colitis so been told to wait until it’s 5.0 then he can have hormone treatment which sounds awful for a man not yet 60. His hospital appointment was cancelled for today for more PSA results . Sorry to be doom and gloom . He said he’s alive but if he’d have known before the op that he still had cancer and symptoms he didn’t have before is it worth it ?

very hard to cheer him up at the moment 

wishing you all , all the best . 

Hello Aluna

Can I suggest that you look at the following link to the NICE guidelines for the management and treatment of prostate cancer. Pages 28 and 29 detail what treatment should be offered to men after radical treatment for prostate cancer who are suffering with erectile dysfunction.  elsewhere in the document it tells you about the incidence of erectile dysfunction at different timespans from the surgery.

https://www.nice.org.uk/guidance/ng131/resources/prostate-cancer-diagnosis-and-management-pdf-66141714312133

I hope things improve for your husband!

Thank you so much for your reply.

Sorry to hear what your husband is going through, but i'm sure there's light at the end of the tunnel and help he can get.  Plus the fact you are on here and giving him the support he needs is amazing, just don't give up.

The more I hear about DaVinci the less inclined I am to go for it, but i'll just have to take it one step at a time and see what options are available.