I know this is probably the most asked question, but it is so difficult, probably the biggest decision you need to make. I was diagnosed with prostate cancer (Gleason 3+4, grade group 2) T2c/NO (localised) CPG2 (PSA 8.8), a few weeks ago and I am in turmoil trying to decide on the best treatment. I know it’s an individual’s choice, but it’s all that has been on my mind over Christmas and new year and the more I read the more confused I feel. I would be appreciative if you do have any experience or guidance apart from internet links, I think I’ve been to most?
I have had frequency/urgency to pee and up to 5/6 times/night most of my life (20’s), and had numerous investigations over the years, second biopsy in 3 years and first cancer diagnosis. I have also been on tamsulosin for quite a while, although not prescribed for my prostate, but to help me pee more, and lesser at night. I am 65 years old, thought I was healthy and hoped to get into my 80’s, also a sex life is still important to us, but you read so many stories, where that just ends following treatment?
Another thing I would like some advice on, is the meeting with the urologist, following diagnosis, is this pressured into making a decision there and then on the day, it probably isn’t but I feel under pressure not to waste anybody’s precious time or fall out of the system.
During the meeting to be told I have cancer, I was informed that an active treatment, should be my only route, not monitoring, and seemed like surgery was the most recommended route. I asked if there were any other routes (HIFU/cryotherapy/NanoKnife/proton (unaffordable)), but was told they are ineffective, only surgery would totally clear the cancer, no disrespect to the devoted professionals, but that’s how I interpreted it anyway.
It is so overwhelming, if anybody has the time, any guidance would be appreciated.
Hi Edz
I was NHS and received excellent treatment. UCLH is the major centre for prostate cancer surgery in London, I was referred there from my local hospital. My surgeon, Mr Lamb, is an expert in the Retzius sparing technique but I understand many of the surgeons at UCLH now use this technique. My recovery has been surprisingly good, 3 weeks post surgery and I am pretty much back to normal apart from ED (which itself is showing some hopeful signs of recovery).
Hope all goes as well for you.
Cheers
Dave
Hi Tezza317
I haven't seen an oncologist yet (radiation pathways) only seen a urologist (surgeon) I think?
I have delayed active treatment at the moment (hopefully not to my regret), but I think I am leaning more toward surgery, although I am unsure why the majority of people seem to choose radiation treatments, unless to do with age or other nedical conditions. I think he said if i go down the radiation pathway, I would need hormone therapy, TURP and radiation, although surgery is a major op. They all have their own possible outcomes/problems. I know i need to do something, only been on AS two weeks and stressing!
Edz
HI Dave, thanks for getting back to me, and glad to hear you are doing well.
My local hospital isn't within the London area (I take it you are?) I don't think I can just ask to be treated at any hospital and the request the treatment I want on the NHS?
I did ask the urologist if Retzius was done on the NHS, he said yes, I didn't specifically ask if I could get it, as I didn't know my way ahead. I did google if you could be treated in a different area, but the computer said NO, unless anybody knows different?
Cheers Edz
Hi, I have decided on LDR brachytherapy, My Gleason score is 3+4 and at present I am advised I don’t need anything else, ie just that.. All the other options seemed to me to have more risk of side effects and this has a proven track record of over 20 years, so lots and lots of data. I was also offered SABR as this is now becoming the standard in my area. Have any of these been offered to you as my understanding is the cancer is still in your prostate, is that correct.. ?
HI Bluecloud1
When I went to my meeting, he said all treatments were available to me, but when I was told it was cancer (4 weeks before that) he said if I were to have radiotherapy, he said he would start me on hormone treatment staraight away, book me in for a TURP and radiotherapy 3 months later. I think that is due to my prostate size and my problems passing urine (I am diagnosed 3+4, localised and my prostate is 53cc with organ confined lesions and evidence of BOO (bladder outlet obstruction)?
I know I need to speak to somebody who deals with radiography though, before making a final decision
Cheers Eddie
Hi Edz
I am in the London area but I have read of a number of people who have had Retzius sparing surgery in other parts of the country (Liverpool/ Surrey/ Portsmouth/ Yorkshire) recently so I think it is becoming more widely available. In the first instance I would contact your urologist and ask to be referred to a centre/surgeon that offers Rs-RALP if that is a possibility.
Good luck
Dave
Hi Eddie, maybe that’s the reason, but I think you would gain knowledge by asking the question, if not brachytherapy then what about SABR, which would have been my 2nd choice, however, what influenced me is not having to go through HRT… only time will tell…. My treatment is soon..
Hi
One thing I have learnt on this site, is that everybody is unique in their symptoms and reasons for choosing a treatment pathway. I was hoping someone would say, you obviously need to choose this (whatever this is), it is the most complicated decision I have ever had to make (when I say I, I mean we).
Good luck with your treatment
Yes, absolutely,that was exactly what I hoped for, but it’s not so clear cut and I was going round and round in circles, however after discussing this with separate specialists in different hospitals I am now putting all my trust into my brachytherapy surgeon and to be fair the others did support my decision because I had options, and I had to make the decision as I would not be good on active surveillance.
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