Just Diagnosed and confused!

User

Posted 07 May 2018 at 20:33

Which is an understatement, to say the least, random PSA test a couple of months ago showed 8 and another showed 10 and then when down again to I think 6.

(Can someone please clarify the readings, because I keep seeing readings of 3.9 or 5.2 for example and cant relate them to the readings in larger figures?)

Anyway i was referred to a specialist and an MRI was arranged which showed a lesion of 12mm (later changed to 14mm) so a biopsy was arranged which I had four weeks ago, and last Wednesday I was given the news that I have a Gleason score of 3-4 =7 and was not really told that much else other than my treatment options which where quite frankly very scary.

I have now done a bit more research but still pretty confused, however at the time I said that I would probably lean toward Brachytherapy, but it seems the side effects from most treatment are a lottery and probably worse than the disease!

I guess until I have all the details I can't really make a decision, so I will be asking for a full copy of the biopsy report so I can see whats what and try and make a decision based on what best for me, I am 65 years old and fairly fit an healthy, no previous symptoms and a small prostate, the biopsy caused me very little problems apart from the blood in ejaculations (how long does this last?)

I am also fairly young in my attitude and outlook, this why the whole thing panics me as it seems no matter what treatment you choose you can end up with potentially life-changing side effects, which quite frankly I am not prepared for or want, I still enjoy sex, and I would hate to have any form of incontinence...the thought horrifies me!

Although I don't yet have all the facts I am starting to think that maybe active surveillance may be an option and see how things develop, although the specialist seemed to want to dissuade me from that way of thinking and did not inspire confidence in his outlook,

so what are peoples opinions and experiences regarding this, the thought of having cancer scars me, but so does the thought of having my current life ruined and feel like an old man before my time?

Thanks for listening, as I am sure a lot of people here are far worse off than me.

User

Posted 07 May 2018 at 21:39

If you haven't done so already, download the toolkit from this website or phone the number at the top of the page and order a copy. Straightforward honest explanations of the different treatments and probably an explanation of why AS may not be a sensible choice for you. It isn't just your Gleason score - the biopsy will also have shown how many of the cores were positive, what % of the affected cores were actually cancerous and how close to the edge the cancerous cells were in each core. In most hospitals, all these results are put to a multi-disciplinary team who then decide which treatments you can be offered. If their view was that surgery, external RT and brachy were all suitable and with equal chances of success then it really comes down to which side effects you are prepared to risk (keeping in mind that some side effects are guaranteed while others are pot luck). For example, dry orgasm and being sterile will be guaranteed but other side effects are only possibilities.

Your question about PSA scores - anything over 3.1 is high for a 50 year old, but high simply means it needs further investigation. Once diagnosed, the pSA is rather irrelevant to determining how serious your situation is unless you have a PSA of 1,000 or similar. The highest we have had on here was 13,000 but our urologist once had a patient with a pSA of 160,000. Conversely, my husband had a PSA of 3.1 with spread to his bladder and Si_ness had a PSA of about 3.5 with extensive bone mets. We have had men with PSA in the region of 70 with no apparent cancer. You simply can't tell from the numbers.

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

User

Posted 07 May 2018 at 22:28

Hi Ricky13, I was about to suggest downloading the toolkit as Lyn has suggested.

Lyn has provided you with a comprehensive reply, the only things I would add are

1. With a Gleason score of 3+4 I would probably take your specialist’s advice and research which treatment of those offered is least unacceptable to you or provides best chance of cure.

2. There aren’t any easy choices, all treatments have side effects which can be life changing. My wife and I spoke of this and decided it wasn’t possible to treat the cancer without it affecting me/us.

Best wishes, Ian

Ido4

User

Posted 07 May 2018 at 23:38

Hi, Yes it is confusing and you could go through a form of bereavement process. Treatment in most cases isn't worse than the disease. It's just a set back and actually no-one need know. Although your normal sex life is likely to stop for at least a while.

Your diagnosis sounds a bit similar to mine. I was offered Active Surveillance as long as I had a template biopsy. It was said they were offering that to avoid being accused of overtreatment, the consultant said I'd made the best choice by insisting on the prostatectomy and it enabled them to learn it was actually 4+4 and negative margin, a mix of bad and good news. Something I wouldn't have known with other treatments. That's not to say my choice is right for you.

Good luck.

User

Posted 08 May 2018 at 00:29

Unfortunately, in some men the Gleason score is increased as evidenced by what some removed Prostates show when sliced in the lab. I would want in particular to know how close the cancer is to breaking out of the capsule. If it is well contained AS could be an option for a time but if it breaks through treatment has a much more difficult job to eradicate it and it could become beyond the scope of surgery and with further progression potentially beyond radiotherapy to be completely effective. So very careful consideration should be given to what a urologist and oncologist has to say in particular as well as what you glean generally from research from reliable sources.

Barry

User

Posted 13 May 2018 at 20:37

Hi Ricky,

Everybody has different feelings and circumstances, but I can only let you see mine to see if it helps!

I’m 60, also fit and healthy other than given relatively low 4.8 PSA, then Gleason 3 + 7. I saw no option other than taking the gland out as cancer was contained - T2 I believe they call it. If this proves to have taken it all away, I shall be forever grateful. Depending very much on how sexual performance was before and what nerves etc are taken out, will of course determine what activity will return later. There are seemingly many ways to help, so don’t despair. From my experience, of a professional operation, brilliant NHS service, excellent recovery so far with little problem from the catheter and no continence problems at all I know I made the right choice. Op was on 10th April, follow up due 23rd May.

Happy to discuss further.

Good luck

Jes

User

Posted 22 May 2018 at 19:31

Hi Ricky13,

I read your post and felt that I should add my experience. I was diagnosed last October, and the results showed that I did indeed have cancer my urologist then said that due to the type of cancer I would be put on active watch. However after the oncologist looked at the results she said that I required treatment because I had two tumors one a 3+3 the other a 4+3 the 4+3 was the one which concerned her the most as it was very close to the wall of the prostate, her worry was that it could break out from the prostate and become much worse. She then proceeded to advise me on treatment options. I went to see various specialists for each of the treatment types and after a month or so of appointments and discussions with my wife and family decided on surgery. Now I am not advocating surgery for you as what works for one will not necessarily work for someone else, however my experience with side effects has been on the whole positive. I was dry within 6 weeks post op, no incontinence, this was due to the fact that I started doing my pelvic floor exercises about a month before my op and, once the catheter was removed, I continued with the pelvic floor exercises hence why I am now dry and no longer wearing pads. Sex on the other hand is a more difficult one to overcome the ED side of things will only get better with time and patience but there is no guarantee it will get better. Despite that sex can become part of your life again and with a little patience and a little practice can become just as pleasurable as before. My wife and I are enjoying each other again as we have changed the way we make love with less emphasis on penetration and more on foreplay and tenderness, what surprised me more than anything was achieving orgasm without an erection. So please don't think that it is the end and please don't put off treatment because of a fear of side effects. The cancer left untreated could end up becoming a lot worse, study the toolkit as LynErye said and make a conscious decision that you feel will benefit you the most and like OldBarry said be guided by your oncologist and urologist.

Wishing you all the best

Ants

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