PSA 4.9 - GLEASON 6.

Hi Tina,

welcome to the site that no one wants to join, but here you will get help and support that is the best on the net.

Firstly, if you haven't already done so, send for the "Toolkit" supplied by the prostate cancer charity which explains all about the disease and the various treatments available. Their number is 0800 074 8383 ; This service is free.

Looking at the figures you have listed, these seem quite low; Geason 6 is the lowest rating given and the PSA figures are certainly lower than mine was at 19.1 . PSA is a very rough guide since it can be affected by other things than cancer.

Watch and wait is quite normal for prostate cancer; it is a very slow growing cancer and treatment when caught eaarly is very successful. The figures you quote are rising slowly and will be monitored by Hubby's MDT who will start treatment at the appropriate moment. Only they can advise you about this since they know all the facts relating to your hubby. There are experienced nurses who can advise you available through the Macmillan helpline : 0808 808 0000 and many people have said how good they are.

I have been promised a cure!?! following treatment with Hormone therapy and radio therapy. The treatment is not without its side effects, but I'd rather have them than the cancer!

Good luck on your journey and let us know hwo you are getting on,

Colin xxx

Hi Tina,

I had my first PSA test in March 2011 and the results were 5.5. My GP sent me to hospital for further tests and they were done over the next several months. It went up to 6.92 then down to 5.2 and finally it was 6.2 just before my biopsy. Before the biopsy 2 consultants said that it would be 20 years before I needed an op?!? After the biopsy I was told that it was G 7 and fast growing so I needed an op immediately. After the op they told me that this would have killed me within a year!!!

It would 'appear' that your hubby's is not as severe but I can remember what the surgeon said after my RP op, 'we were surprised to find that it was almost ready to break free of the prostate and was a lot larger than the biopsy results had signified'.

The good news was that they had got it out 'contained and with good boundaries'.

I don't want to cause worry, just state the facts and they are that the PSA can go up as well as down after they biopsy the removed gland. I was lucky and mine was still G 7. At G 8 it has already started to spread and is too late to operate on.

In my opinion, and that of 2 very good friends (1 is a surgeon and 1 is a GP), if you have done wanting more kids, get it out before it spreads.

Your Hubby's PC appears to be not as bad or fast growing and I would never say to doubt the experts but there are a lot of people on here that would have rather have had it out while they had the chance.

I wish you both all the best.

Tina

My heart goes out to you and your husband at this time.  Overall the advice I would give is listen to the professionals and support teams, but also do a little reading and research. I am probably very similar to your husband, am 52 years old, gleeson 6 ( 3+3), PSA now 5.3 ( PSA in May was 4.25) and only 1 out of 12 cores positive at 5%. I have a family history - my father had PC. I am healthly, no symptons, no urine problems, no health problems - I climb mountains as a hobby.

I have read numerous books on the subject and many white papers. But ultimetly , its your husbands decison with you that counts. Thats the tricky thing with PC, they say its slow growing and they are right - but there is always that nagging doubt. In our cases of early localised with Gleeson 6's they talk about a "window" for a cure. There can never be any guarrentee, but when this window is open there is a chance. What we are doing by taking advantage of this "window" is minimising the long term impact and giving oursevles a better chance of living a longer life. A chap called Dr Patrick Walsh ( who defined life saving procedures that are today used by surgeons in treating PC ), wrote in his book about this "Window" and being able to determine when it was going to close, that is when PC breaks out of the capsule. The method used as he says is the PSA test, but the point he makes, is that though PSA is an indicator, prostate cancer can spread and break out of the capsule - without a change in PSA. Also, what happens in between those PSA tests - it could be on the margins and break out. What he rightly points out is that its a gamble that you take.

I was put on Active Surveillance by my NHS surgeon because I wanted extra time to think through my teatment. Its interesting - I thought that in my circumstance AS was the recommended way forward. I thought that the UK NICE guidelines favoured this for me. They do for older men, but not younger healthier men. The MDT team at my local hospital, and my NHS urologist pointed this out to me.

The point they made was that I had a family history ( father ), I am young at 52 ( I love this ), I am healthy with no problems. The recommendations therefore are to go for the 'cure' and they favoured surgery.

I thought about staying on AS and spoke with my wife - all she could say to me was "she couldnt live knowing that a cancer was growing inside her and there was a chance to cure it - could I ?". She had a real point here. Its bad enough having the anxiety for months of tests and not knowing, never mind every three months going for more tests.

The crux for me came this week with a second opinion I had with my wife from another consultant urologist.

He asked whether we were going to have anymore children - we both said no - out kids are 23 and 25. As he pointed out, the only real purpose of the prostate is to produce the fluids for fertisation. If you dont want any more kids then there is no real purpose for the gland. So if you can get rid of it and get rid of the cancer with it, then why keep it and maintain a risk that at some point the cancer could break out and then you can only treat and contain the cancer.

All this made my mind up.

My surgeon is going  to operate and do an Open RP with bilateral nerve sparing. This gives me the best chance at 1. a cure, 2 minimal incontinence 3. saving the nerves means erectile dysfunction will not be as bad. I had thought about keyhole surgery and robotics, my surgeon could do both of these - he is one of the UK's leading surgeons. However, he has recommended to me to have the Open surgery as it gives the best chance to save the nerves in a procedure he does. There is not much published data on this point but what I have seen seems to agree with what he says.

As I have said - each person is unique and you guys must make up your own minds. Its hard. But speak to as many professionals as you can.  Dont forget to get second opinions - the NHS can arrange these.

Lastly - when you make the decison you must be happy with the surgeon\team you have. You only have one crack at this. I was not happy with my original Urologist, so I got a second opinion and my new one is brilliant . Your husband must have faith in who is looking after him. If there is any doubt then change.

I hope I havent confused you in any of the above - these are just some of the small insights into what I have been thinking through and what decided for me the journey I am taking. Yours might be different.

I hope everything goes well for your husband.

Eddie

( I highly recommend a small book - The Decision: Your prostate biopsy shows cancer Now What? by Dr John C McHugh - i got it on Amazon, took me two nights to read, was brilliant - written by a urologist who got PC himself and was faced with the same decisons we have to make. He goes through all the thought processes for all the treatments and writes it in easy to understand english with all the options clearly laid out )

Thanks Eddie for replying to my post & thank you for all your valuable information.

I have just read your profile & I firstly want to wish you all the very best for your forthcoming operation & thank you for taking the time to help us.

I am going to go on Amazon & order the book that you have recommended.

We also have two grown up children aged 21 & 22 years & my husband, although he's not quite as fit as he used to be, likes walking too, in fact, he last year completed the 'coast to coast' walk & enjoys out door activities, so you do seem very similar.

Hope to keep in touch, Take care. Tina.

Thanks Colin, for your reassuring & helpful reply, I will certainly send for the 'Toolkit', hadn't heard of it before, but I'll do that straight away. I'll keep in touch. Thank you, take care. Tina.

Thanks Dave for replying to my post & for your help.

I read your thread & you have certainly been through the mill, but I'm glad to see that you are now recovering well, it is good to see that you can recover & get to the other side.

I too, wish you all the very best.

Keep in touch,

Take care, Tina.

Dear Tina, Welcome to the group, but sorry you are here.

The psa is only an indication of something might be wrong. Mine was in fact going down, but the problem was I was Gleason 8 downgraded to 7 but agressive. You have already had some good advice here. Talk to your consultant about any concerns you have, and keep talking to them or their team if your worried at any time

.Good Luck!

Gjay

Hi Tina,

Sorry you find yourself here.

I would say that with the PSA and gleason you describe - most men would go for watchful waiting - don't be persuded to rush into any drastic treatment - especially surgery - as recent research has shown that contrary to popular opinion - major surgery to remove the galnd will not give any long term advantage - even though the thought of cutting the cancer out may seem what you want.

Look at the thread

http://community.macmillan.org.uk/cancer_types/prostate-cancer/f/142/t/49957.aspx

Radical prostectomy success rates?

Mal

Thanks Mal for replying, I have been on the thread that you have suggested & I've already printed off some information for my husband to look at, which will be very useful, certainly food for thought, so many options & decisions to make, just hope we make the right ones. Thanks again,keep in touch. Tina.

Tina \ Mal

As I said in my note, listen to your consultants, medical teams and use the knowledge you gain. Everyone is unique and the treatment for one person is not the same for others. Thats why the decisons on prostrate cancer cure\treatment are different to other forms of cancer. Talk to the clinical nurses appointed and the oncology support team at prostatecanceruk - they are brilliant.

Mal - read the debate on the link posted several times - can discuss privately if you wish. I read the studies as well before I made my decison.  We all need to be careful what we say - Active Surveillance is not the same as Watchful Waiting. I thought I would be in your camp of most men - but after doign my own research I changed my mind. Maybe if I was in my 60's I wouldnt have changed and would have been in that Watchful Waiting group. 

Totally agree with you about RP success rates - a reason why I ididnt want my original urologist anywhere near me with a knife. Its important that any surgeon has published outcomes that they can provide to you.

 Recommendations , Procedures and standards in the US are not the same as the UK.

We do need to be concious that NICE Guidelines for RP take into account , not just the PSA , Histopathy , Scans but also Family History, Age and general health. My MDT team took all this into account and my age of 52 and health were major factors in recommending surgery.

My Second Opinion also independantly looked at the same factors and came to the same conclusions.  By the way, my urologist is a fan of LRP and Robotics but its about what is surgically good the the indvidual - I was suprised when he opted for Open RP but the reasoning was right.

A factor I looked at was my fathers history of PC. Personally, having seen him go through chemo its not something I would want when I am in my 60's or 70's. So for me, in my 50's,  having a window now to be able to hopefully remove it when it was organ contained, and with good recovery stats for inconinence and erectile dysfunction,  played a major factor into my decison.

Hopefully, Tina, her husband and his MDT team will come to the right decison on a way forward for him. Whatever he chooses I hope its right for him. By the way, all this talk of surgery - lots of people choose radiation treatments - a friend of mine in his 50's - has chosen that. As I think I said, each treatment is unique for the individual.  Hopefully when the Toolkit arrives, then Tina and her husband can read through all the potentials and use these to help guide him on the journey we are on. The toolkit certainly helped me.

best regards to all

Eddie