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Told operation too risky :(

User
Posted 13 January 2018 11:04:27(UTC)

After being diagnosed on Tuesday T3b possibly N1 5/4  Gleason 9 after PSA 18 & 23 I have just been advised by the surgeon to go for RT/HT instead of robot assisted prostatectomy. I'm disappointed as I had hoped to have the op & be rid completely if possible. He also quoted a 50% chance of a ten year survival which was a bit of a shock. He said if the chance of success was more than 50% he would advice to have it but my chance was less than 50%. I'm back to being worried again!

User
Posted 13 January 2018 14:43:26(UTC)

The other way of looking at it is that you could have had the op, suffered all the side effects and then discovered it hadn’t worked and you need salvage RT/HT anyway. That happened to my husband (he had a 55% chance of recurrence but didn’t really understand at the time what that meant) and he has very much regretted rushing into the surgery as it is so hard to live with the long term effects.

The other thing to consider is that with the RT/HT you have a better than 50% chance of getting to full remission :-)

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


User
Posted 13 January 2018 18:10:19(UTC)

Hi Rich
Check my profile. I was similar to you in all stats. They gave me the op and then found I was G9 T4 N1 with 5 lymph’s cancerous out of 18. The post op results were tragic psa wise and I detested the 2 yrs of ED. I was only 48. I think Lyn is right ( she usually is ) and the best course is a damn good bout of RT to knock it back. Best of luck




If life gives you lemons , then make lemonade
User
Posted 13 January 2018 18:57:31(UTC)
Hi Rich,
My husband was G9 T3B N0 M0 he has HDBrachytherapy then 5 weeks of RT, he will be on Prostrap until June 2018 his PSA has been undetectable for the last year <0.1
He is happy with his decision, regaining his strength and managing the side effects of the HT reasonably well. He has no libido, gets the occasional hot flush, and the odd day of tiredness.
Our lives have changed, physically emotionally and socially. We are the same people readjusting our lives to make the best of something we did not want, this bl##dy disease is something none of us want.
What we do want is quality of life, enjoyment, health and happiness, we will not let this disease get the better of us. We hope he does not have to have further treatments, and he’s been given the old stats of a 50/50 chance of remission. I’m no medic or mathematician but even I can work that one out. A medical friend has told us that usually oncologists are a conservative bunch, so I’m hoping she is right.
He is older than you at 67, fairly fit, still running a small holding and playing as a muzo every day ( at home) so it’s not all doom and gloom, though we both fall into the emotional black hole sometimes, but make sure we drag ourselves out, cos it’s not a good place to be.

Research ask questions and use this site, it has been a place of great support for me.

Leila







User
Posted 14 January 2018 12:25:43(UTC)

You lot are are great especially the ubiquitous "LynEyre"!!!!

User
Posted 17 January 2018 09:47:54(UTC)

Hi Rich
I had a similar diagnosis to you. T3b N1 M0 Gleason 9 (5/4) two years ago. I was devastated.
I was immediately put on hormone therapy tablets. (This shrinks the tumour)
The oncologist offered HD Brachytherapy and 3 week external beam radio therapy to occur at least 3 months after the start of hormone therapy. I was not given another option.

The oncologist told me 1 in 3 cure with 2 in 3 survival in 10 years. My view was that theses statistics are for the whole age range, I was relatively young (56) and fit, which I am guessing you are, and so I my outcome is likely to be better. I think the same applied to you In addition I agree the oncologist with Leila's friend oncologists will tend to be conservative

Good luck

Bill

User
Posted 17 January 2018 18:41:52(UTC)

Hi Rich, sorry you couldn't have op. My husband had the robotic surgery last Friday and got out Sunday. He is doing remarkably well in the recovering at home but finding the catheter difficult to have. He also has to wear the stockings for 6 weeks and inject himself for a month.

He will get over the surgery but there are no guarantees that he will not also need radiotherapy, he is also still on the hormone tablets.

It was his decision to go for this simply because he felt it was being taken away and he had that option. The incontinence once the catheter is taken away is unknown as yet and he knows it could be long term.

I think you just have to go with the options offered to you and trust the doctors.

Think he still has a lot to cope with but we just live day to day and hope for a brighter future.

User
Posted 17 January 2018 21:36:33(UTC)

Just had consultation at Nuffield Newcastle with radiologist. I went mob handed with my 3 brothers. The man I saw is so knowledgable that we could not but agree with his suggestion of hormone therapy and radiotherapy. I'm starting hormones tomorrow for 3 months then starting 77 (?) sessions of radiotherapy. He said as I am 50 I have a good chance of 10 years plus...... My standards/expectations are dropping as I feel quite good!!!!

User
Posted 17 January 2018 21:45:12(UTC)

Good luck for tomorrow Rich.

Hope it goes well for you

We can't control the winds - but we can adjust our sails
User
Posted 17 January 2018 22:11:34(UTC)

Probably 37 sessions (called fractions) 7 weeks & 2 days. Normal RT process is 37 fractions at 2Gy each - a total of 74Gy although some oncologists now do 20 fractions at 3Gy or 3.2Gy which has the same cumulative effect. So I am thinking that 37 and 74 got combined in your head as 77????

You and 3 brothers - I feel almost sorry for the oncologist. Did he tell your brothers that they all need to get their PSA measured?

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


User
Posted 17 January 2018 22:18:50(UTC)

We asked if it was OK and he did not mind at all. He was extremely professional and explained each step to us all but also managed to come across as warm, caring and dedicated to helping (I do believe he is a very senior person here so I am happy I am getting the very best advice), 

User
Posted 17 January 2018 22:38:49(UTC)

And yes Lyn, I believe you are correct above the number of RT sessions thank you........

User
Posted 17 January 2018 22:49:24(UTC)

sorry, yes twin brother had PSA & DRE last week and is OK. The other 2 have had DRE but are going to get yearly PSA.

User
Posted 18 January 2018 00:24:17(UTC)

Originally Posted by: Online Community Member

We asked if it was OK and he did not mind at all. 

 

I was joking :-/ 

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


User
Posted 18 January 2018 22:18:38(UTC)

No problem Lyn! The oncologist said that because of my age they would do everything they could to give 10 years plus life expectancy. That only takes me to 60+ (better than a lot of people, I know!) but I then asked if there was any chance of cure and he said yes. Is this a realistic outcome for me to consider?

User
Posted 19 January 2018 00:13:37(UTC)

NHS resources are stretched and they would not be offering you a curative treatment if they didn't believe it had a reasonable chance of working. If they thought your cancer was incurable, they would have been offering you long term HT possibly with early chemo and / or with one of the new generation hormones.

Believe :-)

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


User
Posted 19 January 2018 00:21:51(UTC)

Just as a point of note, oncologists rarely talk about being 'cured' of cancer - the correct terminology is 'remission'. So while you asked about being cured and he said it was possible (and you are now questioning the reliability of that reply in your mind) he had already told you that he believed RT would give you more than a 50% chance of success .... which is the same as saying 50% chance of remission. Despite your worst fears, that starts to make RT look like pretty good odds.

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


 
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