Told operation too risky :(

User

Posted 24 Jun 2018 at 07:28

Do you not have specialist prostate nurses at your hospital. We have 2 and they will phone , stop , talk and listen. And they can relay info to the Onco if you don’t have time at the appt. Or the nurses on here mate. They not consultants but they know all the ins and outs of treatments. I get the 51 thing as I was 51 lost month also and have asked for my specialist nurse to be at my OOnco appt next Friday with an incurable psa expected to be around 50. I’ve asked him to come along as I’m at the point where I may seriously reject further treatment at all. I’m 3 yrs on from surgery but am bipolar and despite many good times , my life is overall bad and surrounded with guilt over my ability as a father husband lover , and I’m basically just pretty damaged all round with a strong liking for booze and escape.
BUT your path at the mo is still different. I’m sure RT side effects pass by and lots of men now ok. ED can follow later but as we all know this cancer causes life changing issues however you tackle it. Don’t give up ok brother.

Edited by member 24 Jun 2018 at 07:47 | Reason: Not specified

User

Posted 28 Jun 2018 at 03:06

Hi Richard and Lyn plus others !!! wow I recently joined the club 52 years old, Gleeson 7 PSa5.97 anyway I have taken the last hour plus catching up n your story Richard life is so fu...ing cruel sometimes. I am not a Religious man but I am throwing all my positive energy at you Richard. Lyn you are so inspiring as well I feel privileged to have access to you dialog. I am at the stage as well where I really want some guidance I live in Australia where the oncologists all they want to do is remove the prostrate entirely as you all well know that is a sexual no no as well as a incontinence no no !! so I have looked into other options I am to far for watch and wait.. RT or IMRT I think is the same in Australia is one choice but I think I am leaning towards Proton Beam therapy and Prague seems to be the clinic to go to can anyone help me with direction on this is anyone else doing this treatment or about to ? I have been accepted yesterday in having said that I just want to make sure this is the right choice for me. Thank you everyone

User

Posted 02 Jul 2018 at 16:18

Originally Posted by: Online Community Member

hi thread I am 56 I had my prostate removed just before my 54th birthday, I am not sorry to inform you that having your prostate removed is not a end to sexual activity, and as for incontinence I ran 200km in May during radiotherapy without the need for wet look shorts :) . I am not saying you will have the same experience as me, but please do not post "as we all know" because we are all different. Mel

User

Posted 06 Jul 2018 at 21:19

I agree with Mel - John was 50 at diagnosis and 9 years later has no continence problems and no problem getting an erection (okay it was tough for a while but we got there in the end).

Proton beam therapy has had some really good results as a salvage treatment but not as a primary treatment so I would caution you not to spend a lot of money without researching very very carefully.

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

User

Posted 14 Jul 2018 at 20:48

Hi everyone,

I clearly don't fit in here and it is causing me more bad effects than good by a long way. I'm sorry my posts seem to offend people and maybe there were too many but I didn't mean any harm. It was, however, blatantly obvious that I wasn't "fitting in".

I have tried to delete all my posts but it is not quite as easy at it seems. Good luck to all pc sufferers and OH's who represent them!

Richard

User

Posted 14 Jul 2018 at 22:23

What has happened to bring this on Rich? If you read some of the responses on this thread you can see that a lot of people have been following your progress and are genuinely interested in trying to help with whatever problems you are facing.

I appreciate that we can't always help but your contributions have also helped others.

You have to do what makes you comfortable but it will be a shame to lose you from the site.

Hopefully tomorrow will be a better day.

All the best

Kevan

User

Posted 14 Jul 2018 at 23:27

Hello Kevan,

I just got a genuine feeling (for 3 months?) that the big hitters on this site just did not give me any credibility. They literally ignored me or patronised me. I was/am genuinely scared. I am 51 and diagnosed T3b Gleason 9 and told 50% chance of reaching 60. and these people upset me a lot as they said outcomes are much better.........

So from now on I am doing this with my famlly and not PCUK

Thanks Kev!!

User

Posted 15 Jul 2018 at 08:23

Good morning Rich

Thanks for replying.

Sometimes the problem with written responses is that they can be difficult to interpret as you can't hear the tone of voice or see the visual cues that we normally use. This can lead to misunderstandings which may have happened here.

Like you I am a Gleason 9 T3b but I am possibly more fortunate in that I am 69 and so the future is not quite such a worrying place to contemplate. I have no children and so I do not have that extra burden of responsibility all of which makes it harder for me to help you as I am not walking this path in your shoes.

What I would ask is that you make the most of each day as regardless of PCa none of us knows how long we have so wasting today worrying about tomorrow robs you of precious time.

Today I shall be driving from Swindon to Dartmoor to drop off students at the start of their Duke of Edinburgh Gold expedition and then I shall drive back. I am looking forward to it. I can't do the pick up on Thursday as I shall be on my way to Canada to visit friends.

I am just trying to say that we share the same diagnosis and with support from family and friends we can simply carry on carrying on until that ceases to be an option.

In the meantime you are still Rich I'm still Kev the difference is that we know we have PCa.

I sincerely hope this isn't the last I hear from you but I respect your decision about that.

My very best wishes to you and your family.

Kevan

Edited by member 15 Jul 2018 at 08:24 | Reason: Spelling error

User

Posted 15 Jul 2018 at 10:36

I don’t think people are ignoring you Rich. The site has changed quite a lot and is transitional as new people join all the time. I suppose I was a big hitter when I joined three years ago. Just as panicked as you I was. I’m 51 and G9T4N1MxR1.

I too have been told I won’t reach 60. Maybe only 56. I’ve actually accepted all this and have still refused RT for a fourth time. Maybe I’m stupid but I’m just living and enjoying QOL whilst I can. My own choice. I don’t post as much as quite frankly coming on the forum can be very depressing and lower my mood. Do you want to speak to someone ? ( me ? ). I’ll help if I can

User

Posted 15 Jul 2018 at 11:05

Thanks Kev, thanks Chris. I genuinely felt guilty as I was on the most popular post top 5 list but only as I was a neurotic posting 4 times to others one. I must have come across as being very needy. I also felt guilty Chris as I wasn't as bad as you (officially) but may go in any direction. The site was such a help at the start but then began to be like a drug in that I could not get enough. I don't know how this will turn out but I don't mind admitting I am scared and I unfortunately have a grim outlook.

I have unloaded on you lot but if you asked the lad who sits next to me at work he wouldn't have a clue (maybe he would say "he kept disappearing every day at 2:30pm "- for RT). I raised £1450 for PCUK just by changing my Facebook birthday request to ask for donations instead of presents (????). There are people who donated £50 and won't speak to me yet clearly know I have pca? I am however great at work as it is such a good distraction.

Anyway - I have "reset" and want to try again.

Richard

User

Posted 15 Jul 2018 at 11:23

Well done. When I first joined the site I had a different post. It was something like Help , any advice welcome. I was ranting and panicking and denying and threatening suicide , rejecting surgery etc etc etc. Sounds a bit glib but acceptance will come in time. It doesn’t make everything right but it makes things easier. My best suggestion to you is to find a good councillor and see them weekly. Ok it costs me £40 a pop but worth its weight in gold. Don’t give up mate please don’t. You have to try and make the most of every day. Concentrate on Now and not the Future. It really helps.

User

Posted 15 Jul 2018 at 13:59

Hi Rich, I have always rend your posts with interest and tried to answer when I was able.

I also have a very uncertain future due to the pathology of my disease and how quick it returned after prostatectomy.

It is very difficult dealing with the uncertainty.

I would particularly endorse what Kevin has saying about the written responses. You have no visual cues etc.

This makes misinterpretation very easy.

We used to have issues at work with people falling out over misinterpreted emails.

I for one decided to discuss things face to face which was much better.

I realise this isn’t possible here.

I would also endorse what Chris and Kevin have said about livng each day to the best.

It would be a real shame to lose you from the site, I see you and the others here like family as we all are travelling the PC road. There is an understanding here that you won’t get elsewhere.

Take care, Ian.

Ido4

User

Posted 15 Jul 2018 at 15:18

I’m genuinely overwhelmed - menopausal or not you have humbled me gentlemen. Thanks so much, I would be a fool to go as you have reminded me how powerful this community is. I am in your debt again.

Richard

User

Posted 15 Jul 2018 at 18:21

Just glad your not going Rich. All the best Geoff.

User

Posted 15 Jul 2018 at 18:50

HI Rich

Just got back from Dartmoor and so pleased to see the responses you have had and great news that you will stick with this strange and varied community.

Made my day - so keep talking to us.

All the best,

Kevan

User

Posted 15 Jul 2018 at 19:00

Hi Rich, don’t take the number of responses you get as some kind of measure of how much people care; it just doesn’t work that way. Yorkhull is one of the kindest cleverest people I have ever known and some of us care deeply about his progress but you will see that few comment on his posts. Likewise, my updates on J and dad produce very little response - it isn’t a popularity vote, simply that sometimes there isn’t much left to say :-/

Edited by member 15 Jul 2018 at 21:40 | Reason: Not specified

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

User

Posted 15 Jul 2018 at 19:06

God Lyn you Rock!! Well mostly anyway. All too true words. The forum moves ever forward and sometimes we are all just too tired. And the weekend is never good. Your contribution to the forum is phenomenal xxx

User

Posted 15 Jul 2018 at 19:34

What do you mean, mostly????

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

User

Posted 15 Jul 2018 at 19:35

Lol , you know well ,-)) x

User

Posted 15 Jul 2018 at 19:59

"Lovey" ?????? I refer to big hitters and that most certainly includes Chris, Lyn, Kev and Ian. You lot make me cry all the time but its not my fault it's the hormones.

User

Posted 15 Jul 2018 at 21:06

If Lyn didn’t like you then you’d know by now. She has replied to many of your posts which is a good thing I promise you.

User

Posted 15 Jul 2018 at 21:40

I type the way I talk - sorry. Amended :-/

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

User

Posted 15 Jul 2018 at 21:49

I know Chris

I use you and Lyn as my benchmark. Simple as........

I am so very tired but thank you all

Night night,............

User

Posted 15 Jul 2018 at 23:12

Night night

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

User

Posted 15 Jul 2018 at 23:18

Don't let the bed bugs bite!

User

Posted 19 Jul 2018 at 23:22

Which bits hadn’t been explained to you?

Definitely affected your treatment options. PNI identified at biopsy is associated with poor outcomes from surgery. 70% in cores is rather high and often that is associated with positive margins. PIN is cancer waiting to happen.

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

User

Posted 20 Jul 2018 at 10:39

Thanks Lyn,

All the bumph I have read indicate that positive margins are a reference to surgically removed tissue and the fact there is a higher likelihood of spread outside this tissue? I suppose for me it is a reference to the higher likelihood of spread outside of the prostate as there is evidence of deformed cells on prostate edge?

User

Posted 20 Jul 2018 at 23:11

Comment only: I don't think deformed is the correct terminology - is it "poorly defined"? My original urologist never gave me histopatholagy report and I got it weeks later after specifically requesting it from oncologist.

User

Posted 21 Jul 2018 at 00:48

When they remove the prostate, they encase it in wax and then slice it finely. A positive margin is where where the cancerous cells are touching the wax. So yes, the concern is that in a proportion of those cases, there are also cancer cells outside the wax, which means they are still somewhere inside the patient. But not in all cases.

Poorly defined or irregular are probably better terms from a medical point of view but deformed sums it up.

But you haven’t had surgery so positive margins doesn’t apply to you.

Edited by member 21 Jul 2018 at 00:50 | Reason: Not specified

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

User

Posted 05 Aug 2018 at 21:07

I am much more chilled than I have been so I can easily deal with the short life expectancy quotes I've had so far. G9 T3b determines this so hey ho! I've had a great weekend and my famlly are great too!! I am happy.

Richard xxx

User

Posted 05 Aug 2018 at 22:32

Rich

For high risk prostate cancer like yours hormones and radiation is standard care. In some circumstances surgery on top may also help. Usually best to go and see more than one surgeon so you get a second opinion tailored to your individual case.

Good luck.

User

Posted 05 Aug 2018 at 22:37

Originally Posted by: Online Community Member

OK folks, consultation On Wednesday so presumably PSA and testosterone checks plus I will be asked how I'm doing. Any advice on what I should ask? Loads of stuff on here recently about the resolution of the PSA check so what is the correct measure?

I am much more chilled than I have been so I can easily deal with the short life expectancy quotes I've had so far. G9 T3b determines this so hey ho! I've had a great weekend and my famlly are great too!! I am happy.
Richard xxx

You still have a prostate (I think?) So the normal PSA mesure is the one you want. The supersensitive is only valuable for guys with no prostate.

User

Posted 05 Aug 2018 at 23:06

Thanks gents - yes I still have a prostate - so should I be looking for a PSA vaue of under 1? (i have no idea what that means)???

Edited by member 05 Aug 2018 at 23:07 | Reason: Not specified

User

Posted 05 Aug 2018 at 23:13

Radiotherapy takes a while to lower PSA fully as do the hormones. I have no personal experience of exactly how long but I am sure someone will say - I believe it is up to 6 months? But could be even longer for RT.

But for PSA and prostate cancer lower is invariably better!!

Something to quiz your doc about as to what success will measure in your case.

User

Posted 05 Aug 2018 at 23:13

The surgeons don't want to touch me with a barge pole!! I've had the radiation treatment so Wednesday will be blood test? (why would you not get the blood test first????????) . I mean the consultation is pointless......

Edited by member 05 Aug 2018 at 23:34 | Reason: Not specified

User

Posted 05 Aug 2018 at 23:51

This may just be a 'so how are you feeling' chat Rich - a lot of oncos wouldn't be interested in a PSA test this soon after the RT as it is too early to really tell them anything. And unfortunately, there isn't a definite PSA level that you should or should not have fallen to. They say that you should hit your PSA nadir about 18 months after RT finished - the radiation continues to kill the cancer for a very long time after the zapping has ended.

Even if I am right, it isn't pointless though - it is an important opportunity for the onco to check how you are and for you to ask questions like 'so next time I have my PSA test, what will you be looking for?' 'how will we know this is working?' and to discuss any side effects you are concerned about.

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

User

Posted 06 Aug 2018 at 00:13

Thanks Lyn - thats what I was thinking so if I'm of a similar frame of mind to you I'm happy. Imagine how much you could earn helping old fart PC sufferers?? I have a list of questions to go through. More importantly I have a meeting with the Prostate Survivorship Nurse Specialist on Thursday then with the Maggie's clinical psychologist. This is a result of 3 attendances to support group activities which were simply not appropriate to me. I am hoping to feel very good later this week.

User

Posted 13 Aug 2018 at 14:33

I've just had my first post treatment PSA result over the phone from my Oncologist.

0.505

Yippeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!! (I think!) :)

User

Posted 13 Aug 2018 at 18:02

Brilliant news :-)

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

User

Posted 13 Aug 2018 at 22:30

Great stuff Rich!

User

Posted 14 Aug 2018 at 16:48

Great news Rich.

Ian

Ido4

User

Posted 14 Aug 2018 at 17:02

Chuffed for you Rich !

User

Posted 20 Aug 2018 at 19:57

Great news Rich.

I have just completed my 37 fractions on Friday 17th August not due for my review until October

User

Posted 20 Aug 2018 at 20:15

That's great news Rich. Well done.

Kind regards

Kevan

User

Posted 07 Sep 2018 at 22:03

I've had something of an epiphany this week (again?). I've been feeling good but not in a manic way like I was earlier in the year. I had the second meeting with clinical psychologist at Maggie's today. I just said that I feel that, despite being diagnosed "High grade", "High risk" and having "very aggressive PCa" that I'm ok. I'm sure that I will be fine for at least the next 3 years. I mean no change to condition.

I said today that I felt that I had re-categorised the "Big C" into into the "Little c" and effectively parked it up for the moment. It has been quite empowering for me!. My counsellor was gobsmacked at that and asked if she could quote me on it to other people! I said yes.

When I said to my oncologist after first post treatment consultation that I wasn't happy with men's support group outcome he told me to stop going and get on with life! So I think I will have a break from all this madness and laugh and enjoy life. I;m off to Japan next Friday with work and I may try to dip in and out of this site (but I may not!).

I know I will have the odd bad day but that is life - "Into each life some rain must fall, some days must be dark and dreary" (HWL).

Thanks to you people who do such a fantastic job to help men and their partners come to terms with this.

Good-bye for now!

Richard :)

Edited by member 07 Sep 2018 at 22:50 | Reason: Not specified

User

Posted 08 Sep 2018 at 09:37

Well done!

The proportion of the battle that must be fought in the mind should never be underestimated and it seems you have won an important victory in yours.

Nick

User

Posted 08 Sep 2018 at 10:32

Fab post.. very positive and great to read.

Enjoy Japan and life!

Regards

Clare

User

Posted 08 Sep 2018 at 17:11

Good for you Rich. Enjoy your adventures.

Ian

Ido4

User

Posted 08 Sep 2018 at 17:42

Hi Rich

This is great news and I am so pleased for you.

Enjoy Japan.

Kind regards

Kevan

User

Posted 09 Sep 2018 at 07:05

Hi Rich good news,

it is now 13 years since Tony first went to the drs about his problem with his wee spraying and being slow, Gleason 9 T3B spread to seminals very aggressive he was 60 at the time, roll forward 13 years he is still here and still fighting it, no pain no anything really he gets tired more but he is now 73. good luck with your journey.

regards barbara

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