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Diagnosed at last!

User
Posted 14 Nov 2017 at 12:16

My PSA was (is?) 8.8 and I have been for the MRI (nothing found!)  and then the biopsy. The biopsy found cancer in 3 needles and I have a score of 6  3+3  Gleason.  My Urologist tells me I have no need for immediate treatment and advises a further PSA test in 4 months, then a decision can be made on further treatment. 

I believe that my Gleason 6 score is the least serious and that the advice to watch and wait is good, what do you think?

I was told that I was suitable for Brachytherapy, radiation, and surgery if it is found necessary, but brachytherapy is not available in my NHS Trust area! Post code lottery again.

I am starting to get my mind around this, and I believe that I am one of the lucky ones with such a low score. 

So waiting and watching commences.

 

John

 

 

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

User
Posted 19 Nov 2017 at 20:15

Having had time to sit and ponder I now have a couple of questions:- Should I be offered a bone scan? Is four months to long without a further PSA test?

John

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

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User
Posted 14 Nov 2017 at 15:43

Hi John,

Most men have some PCa by the time they reach your age, many of them not knowing they have it, yet most of them die of something else. It is known that more men have radical treatment than need it. So with a diagnosis like yours, active surveillance is an option that many would settle for, thereby deferring at least for some time the potential side effects of radical treatment. Very occasionally, it has been found that with a man on AS the aggressiveness or advancement of the disease is greater or more extensive than diagnosed and earlier radical treatment would have been advised with the benefit of hindsight. So this small risk has to be weighed against experiencing the potential procedure downside and after effects of radical treatment that might never be needed.

It has to be your call.

Barry
User
Posted 14 Nov 2017 at 17:08

Hello Sparrow.
My husband was on surveillance for a year aged 73/4 at the time of diagnosis then went for permanent seed brachytherapy when his PSA started rising.

He's been one of the lucky ones so far in that he has no real side effects and things like ED would probably have happened at his current age of 76 anyway.

Good luck. If you are one of those who are happy to monitor the progress (or lack of) your cancer the AS would be for you. Just don't get blase about the check ups.

Good luck with your choice

We can't control the winds - but we can adjust our sails
User
Posted 14 Nov 2017 at 17:24

Thanks both, I will wait until my PSA starts to rise ( unless it has already done so, no test until the effect of the biopsy has subsided ) then I will consider my options. I had considered brachytherapy as a suitable option for me during my wait for the results, my urologist has told me that it is not an option in my area, no one is doing it!

So my choices are AS, surgery and RT. If I have to I will go for surgery, my urologist tells me he now has a robot, prior to this it was not available.

I have researched the possibility of under diagnosis and I am aware that it sometimes happens, and that could be a reason to opt for surgery.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

User
Posted 14 Nov 2017 at 17:43

Or, if you decide that brachy is something you are interested in at some future date, you can ask for a referral out of area to a specialist that does offer it.

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

User
Posted 14 Nov 2017 at 18:23

Hi John,

I was DX in 2011 with 3+3 6

went for a second opinion with a very Famous Hospital 

Now 4 +5 cancer back and it is now incurable

Good Luck

 

Barry

User
Posted 14 Nov 2017 at 20:15

Thanks Barry, your input has given me food for thought, maybe I should opt for surgery earlier rather than later. It's going to be a tough choice but I have time to mull things over. Good luck.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

User
Posted 19 Nov 2017 at 20:15

Having had time to sit and ponder I now have a couple of questions:- Should I be offered a bone scan? Is four months to long without a further PSA test?

John

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

User
Posted 20 Nov 2017 at 17:27

John, you have been given sound advice by your doctor. If everyone with a Gleason 6 score had a bone scan, the NHS would be overwhelmed and those who really need one would face unreasonable delays.

In six years time without active surveillance, your PCa might indeed progress, but with careful attention to PSA at sensible intervals (four months seems fine) and DREs along the way, and yes perhaps a bone scan in a few years if the signs don't look good, you should be spared Barry's fate.

I would relax if I were you. You are fortunate that your PCa has been caught very early. Like so many with your score, for you too, it may never become serious.

AC

User
Posted 20 Nov 2017 at 17:50

Thanks AC, I do try not to worry and I know I am fortunate with a low score. There is a part of my brain that is a bit irrational and worries a lot :-) Your comments are sound advice, I will try and relax and not think about things to much.

So no more "pondering", I just have to tell my brain!

John

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

User
Posted 30 Nov 2017 at 12:59

Well, I am back with questions again, sorry!

I have lower back pain, I have had it for about 3 months and it isn't getting any better. Now I know that with a Gleason 6 3+3 the chances of it being PCa related are very small, however I can't help but wonder if it IS related.

I should say that I do not normally suffer with back pain and I am a well able to lift heavy things, but this back pain is getting me down a bit.

I have booked a phone call with my GP, a visit takes about two weeks!

Does the MRI I had prior to the biopsy specifically look for any spread to the bones?

John

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

User
Posted 30 Nov 2017 at 14:46

I would be more concerned to check whether you have a bit of infection, maybe kidney / urinary tract? Or, if the pain has only occurred since biopsy, infection from that.

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

User
Posted 30 Nov 2017 at 17:08

Thank you Lyn, I hadn't considered an infection, although I don't FEEL infected, no temperature or general malaise.

I will mention that possibility to my GP, I have made an appointment for Monday AM, probably something else like a pulled muscle but I will have to get something for the pain at least. 

 

John

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

User
Posted 30 Nov 2017 at 19:35

Some UTIs are notoriously difficult to diagnose, and although the GP's dip test may come back clear it would still be worth asking for a sample to be sent to the hospital lab for checking.

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

User
Posted 12 Dec 2017 at 21:15

Well, the doc had a look at my back and diagnosed "mechanical" problem. Ibruprofen and rest.

Had another PSA and it is DOWN to 7.5. I know it can be up and down but down has to be better than up :-)

John

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

User
Posted 12 Dec 2017 at 23:25
The Macmillan nurse told me I'd blame every ache on my diagnosis and so it was.

I've asked 4 doctors if my hip pain and sore back could be related to PCa and they've all related to my low psa. <0.05. I realise you haven't got that measure.

The first consultant said the MRI covers the body and I'd had a bone scan.

My GP gave me another PSA test a few months after my op and then said unlikely. Arthritis was his diagnosis although the back is a recurring problem.

The GP gave me Ibuprofen for the hip with the offer of a cortisone injection.

The back got anti-inflamataries and a stomach lining protecting tablet. I could give a longer story for both but that's the gist. I'm not 100% certain its not related though. Since October last year nothing has been as certain.

Rest isn't usually a treatment for a bad back, keep moving without exerting it is the usual.

Regards

User
Posted 20 Mar 2018 at 15:32

Update, I am just back from a urologist appointment. PSA has risen to 9.8. He will do another in 3 months and if it's up again or the same it's treatment time.  I had hoped for years of A.S. but it might not be.  

The Robot he was promised has failed to materialize, it was a "done deal" but it is not there and he is still waiting.

I have to go for an hours drive to get to a hospital with one. 

Only 45 mins for Brachytherapy! I am leaning towards Brachy, we will see.

 

John

 

 

Gleason 6 = 3+3 PSA 8.8 P. volume 41.1 cc

Left Cores 3/3, Volume = 20%

 
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