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Hello. Please forgive the whinge.

User
Posted 24 May 2018 at 22:11

Hi all. This may be my only post and sorry it's a long one but need to get it off my chest as no one else to unload on.

My name is Stephen, I'm 62 years old. I first reported to my GP one year ago with what turned out to be a urinary tract infection. She asked my family history. Told her my dad died of PCA at 68. She did a DRE and referred me for bloods and an ultrasound, plus a referral to urology at a different Trust as my own doesn't provide the service. PSA was normal, ultrasound identified a micro cyst on a kidney, and "heterogeneous enlargement of the prostate".

GP noted on scan result "micro cyst on kidney, nothing else of note. Patient to take copy of scan result to urology appointment". No mention of the enlargement.

Had to wait another three months for the urology appt at King's College Hosp. Was seen, they did a urine flow test followed by an ultrasound of my bladder. Was then ushered into consultant who told me all ok. Showed him my ultrasound report from three months previous, he said "ah, heterogeneous is not a word you want to see". Did DRE then referred me for urgent MRI.

Had MRI done two weeks later, followed by five weeks of silence with me constantly chasing. Finally got called in to see head honcho who told me MRI had identified large lesion on my prostate and the chance was 65% it was cancerous.  Went in for trans perineal biopsy in January then was called back for two weeks later to be told of the 32 samples they'd taken 31 were clear, one was cancer. Told it was confined to my prostate. Consultant said although only one sample was cancer that wasn't to say there wasn't more cancer in areas they didn't sample. Said it was unlikely to cause me problems in the next 10 years. Put on the Active Surveillance programme.

I know that relative to the overwhelming majority of the people here my case is mild. However, being human after all, once you hear the C word it has a big impact mentally. I don't believe there's any comfort to be drawn from only having a little bit of cancer! Especially when my dad died of it at 68 and no action is proposed to treat it. Kind of leaves you in limbo.  Problem compounded by the fact I've been under psychiatric care for severe treatment resistant depression for years now. My marriage ended seven years ago, and I had to take early retirement. I now live a very solitary life and struggle with alcohol addiction which has only got worse over the last six months as I come to terms with thoughts of my own mortality. I know I'm shortening my life with the booze but think, what does it matter anyway.

Sorry for rambling on and whining so much. I hate self pity and I know full well how fortunate I am compared to you guys. As I said this may be my only post. Just needed to unburden. All the best all

User
Posted 25 May 2018 at 00:25
I am sorry that you have had so many challenges to deal with but you shouldn't feel alone with this. If you phone the number at the top of the website, you can talk to the charity's specialist nurses and they may be able to put you in touch with a volunteer mentor that has been in your situation. When my husband was first diagnosed, PCUK put him in telephone contact with a man who had had treatment, and he found it very reassuring to speak to someone who understood but that he didn't have to actually meet face to face.

Active surveillance is a very good option for many men - research in 2017 showed that for men with very small volume, low grade prostate cancer the outcome was exactly the same over 10 years whether they had treatment or not. And to be honest, if you have an alcohol dependency issue, you might find the possible treatments unmanageable - for radiotherapy you would have to not drink for 7 - 9 weeks and if you had surgery, the physical impact of major abdominal surgery could be very tough on your own and long term side effects like incontinence might be hard to cope with if you went on a binge.

The important thing to remember about active surveillance is that it is a valid option, that the key word is 'active' (its not like they just leave you to die) and that it is not a permanent choice ... if your PSA rose or an MRI or biopsy suggested that the cancer was becoming bigger you would be able to change your mind and have treatment at that point.

Others that have actually chosen AS will hopefully post tomorrow and tell you about why they chose it and how it has gone for them.

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

User
Posted 26 May 2018 at 13:20

I think I understand your concerns about active surveillance. It must be difficult to get your head round but I am pretty sure that if this was recommended it was done for the right reasons. They don't do this as an economy measure as it were. The key word is "active" - in short they will be monitoring your PSA levels closely and will move towards treatment if it becomes necessary. When I was doing my "google fest" prior to diagnosis I came across the figures mentioned by Lyn above. It's a viable option for many men and, of course, doesn't involve side effects.

Good info on this site about each treatment option. Well worth reading and, of course, discussing with one of the nurses.

 

User
Posted 28 May 2018 at 06:47
https://prostatecancerinfolink.net/2018/04/20/long-term-data-on-active-surveillance-from-mpskcc/

A study that should provide reassurance about the AS path..

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User
Posted 25 May 2018 at 00:25
I am sorry that you have had so many challenges to deal with but you shouldn't feel alone with this. If you phone the number at the top of the website, you can talk to the charity's specialist nurses and they may be able to put you in touch with a volunteer mentor that has been in your situation. When my husband was first diagnosed, PCUK put him in telephone contact with a man who had had treatment, and he found it very reassuring to speak to someone who understood but that he didn't have to actually meet face to face.

Active surveillance is a very good option for many men - research in 2017 showed that for men with very small volume, low grade prostate cancer the outcome was exactly the same over 10 years whether they had treatment or not. And to be honest, if you have an alcohol dependency issue, you might find the possible treatments unmanageable - for radiotherapy you would have to not drink for 7 - 9 weeks and if you had surgery, the physical impact of major abdominal surgery could be very tough on your own and long term side effects like incontinence might be hard to cope with if you went on a binge.

The important thing to remember about active surveillance is that it is a valid option, that the key word is 'active' (its not like they just leave you to die) and that it is not a permanent choice ... if your PSA rose or an MRI or biopsy suggested that the cancer was becoming bigger you would be able to change your mind and have treatment at that point.

Others that have actually chosen AS will hopefully post tomorrow and tell you about why they chose it and how it has gone for them.

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

User
Posted 25 May 2018 at 07:18
Hello and thanks for opening up to the forum. Great advice above. I’ve had mental health issues and was diagnosed after many years as bipolar 2. I lost my job and was medically retired at 46 yes old. Shortly after I found I had prostate cancer but it was a nasty aggressive one. I fought surgery and treatment of any kind. In some ways I wish I’d stuck to my guns as I’m 4 years down the line and three years after surgery yet still incurable. It has been both a physical and psychiatric nightmare. My life has always included alcohol and like yourself this seems to be worsening with each test , result , scan , procedure etc. I firmly believe I may have a heart attack or liver problems before the cancer gets me.

But as LYN said your position at present is favorable, and far preferable to someone with depression issues , than being poked , prodded , opened up and made incontinent and impotent. Do phone the nurses for a chat

If life gives you lemons , then make lemonade

User
Posted 26 May 2018 at 13:20

I think I understand your concerns about active surveillance. It must be difficult to get your head round but I am pretty sure that if this was recommended it was done for the right reasons. They don't do this as an economy measure as it were. The key word is "active" - in short they will be monitoring your PSA levels closely and will move towards treatment if it becomes necessary. When I was doing my "google fest" prior to diagnosis I came across the figures mentioned by Lyn above. It's a viable option for many men and, of course, doesn't involve side effects.

Good info on this site about each treatment option. Well worth reading and, of course, discussing with one of the nurses.

 

User
Posted 26 May 2018 at 15:33
Hello Bean121 and welcome to the club I guess none of us would have chosen to join. Nevertheless, from my very limited experience, the PCUK site and indeed this forum has been simply incredibly supportive. It’s a wonderful source of information and at least our walk in what was probably the dark now has a well-illuminated path. Lot’s of question can be asked, none are too daft and the great people here and the specialist nurses readily oblige with replies.

I was diagnosed in March this year and felt well armed to take on the unwelcome news as I had researched a lot on the net but mainly on PCUK. I was told that I had a Gleason 3+3 and only one core of the biopsy showing cancer cells. The specialist nurse at the hospital immediately suggested active surveillance but did at the same time say that some guys cant settle with the thought of a cancer in their body and really push for treatment.

For my point of view, AS seemed an ideal way forward as I take the approach that is it is a sleeping pussy (so to speak) and does not wake up to bother me, then that’s fine so let’s see how things go. I should say that I also sought some reassurance from a PCUK specialist nurse and believe me, these guys and girls are superb!

So, I will trundle along every 3 months to hospital/PCA review and see where we go from here.

The do understand alcohol; sadly an initial crutch of support that in excess turns a dark cloud into a thunderstorm; I, unfortunately, lost my wife to alcoholism.

Do use this place; as I say, the folk are great and if you let them, are tremendously supportive.

User
Posted 28 May 2018 at 06:47
https://prostatecancerinfolink.net/2018/04/20/long-term-data-on-active-surveillance-from-mpskcc/

A study that should provide reassurance about the AS path..

 
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