What I've been waiting for. Estimation of life expectancy newly diagnosed men with PC.
Posted , 7 users are following.
I was diagnosed 4 years ago at the age of 49 with PC 3+3 and have been on active surveillance since then with my PSA going up and down at regular intervals.
The doctor, even when newly diagnosed, seemed very keen for me to be treated but when looking at the evidence online, the research appeared to suggest many people get treated either too early or when they should simply remain on Active Surveillance.
Making that decision is so difficult and everyone agrees it's a personal choice but this tool I've come across, I personally find very helpful. When I put my own health stats into it - the figures say 0 people out of 100 would have died of PC in 10 years and in 15 years just 3 out 100 would have died of untreated prostate cancer.
Although all tools may not be 100% accurate it is evidence based and does for me at least, provide some reassurance - I hope it may do for you too.
https://webcore.mskcc.org/survey/surveyform.aspx?&preview=true&excelsurveylistid=4
0 likes, 22 replies
Pepasan Sailor_Sam
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Sailor_Sam Pepasan
Posted
In my case this means not having any radical treatment until the evidence is overwhelming.(but not too late to do something about it)
Best Wishes
Roger2Dodger Sailor_Sam
Posted
As I indicated in another discussion. Today, March 31 is the day of my biopsy. After all results come in, I will come back to this thread and do some serious reading. Thank You for all the info that you provided. I shall keep in touch!
Roger
Sailor_Sam Roger2Dodger
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alfred5 Sailor_Sam
Posted
Having read a lot of stories on the other uk prostate cancer site I can see there would be no way to predict a life expectancy. Some men on there have been diagnosed with psa very high and Gleason 9 or 10. Some even in bones and some of them are still alive 10 years on. Others have not responded to treatment and lost their lives.
It seems this disease effects people in different ways. The majority of men with the lower grades will die of it rather than with it as I'm sure you know.
But I am sure you couldn't find a life expectancy.
Pepasan alfred5
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alfred5 Pepasan
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But I can see what you mean now. Though our consultant said my other half would need treatment at some point if he left it completely. Plus a bit biopsy yearly. So he decided to take treatment.
Sailor_Sam alfred5
Posted
I suspect there are many men out there who may have rushed into seeking and having treatment (Based on mis-information) which has impacted very negatively on their quality of life - who, if they had been more informed, would not have made that choice as readily as they perhaps did.
Pepasan alfred5
Posted
Sailor_Sam alfred5
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It's a personal choice of course as some people don't deal very well cognitively with having to live with Cancer and knowing it is there, and if that's the case good luck to them.
best wishes and hope he is doing well.
Pepasan Sailor_Sam
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Sailor_Sam Pepasan
Posted
For example, people with a similar diagnosis to myself and are on Active Surveillance may say to themselves - "I have Cancer but it's also Prostate Cancer which has a much better outcome in terms of treatment and life-expectency than other Cancers".
However, you can only utilise these techniques if you have the knowledge about the "Enemy" in the first place. I think that's perhaps one of the most important things - making sure you know what you're dealing with.
When I was first told I had PC 4 years ago I knew nothing - I thought I was going to drop dead the next day and never see my kids grow up. Then you do the research and things may not be quite as bad as they first seemed.
Pepasan Sailor_Sam
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alfred5 Sailor_Sam
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As we have 3 young children (I am 15 years younger) my other half decided to have treatment.
I looked on the other prostate cancer site and so many men with similar readings have had their prostate removed. Leaving big side effects. I also read of men that had their prostate removed and found the cancer in the removed prostrate a higher grade than on biopsy, also some have had spread that did not show on biopsy. Meaning after having the prostate removed they needed radiotherapy too.
Reading all this made us opt for treatment. Other half would need a big biopsy every few years if untreated, something else he didn't want. He has had an infection on and off for 18 months since the 12 needle one. Though the bigger one is less likely to cause a problem as they go in through the skin rather than inside the rectum (usually cause by ecoli entering the prostate from the bowels)
Anyhow everything added up. My other half did suffer unusually bad side effects after brachy. But over a year down the line he is mostly back to normal, he keeps getting an infection in his prostate which was from biopsy, it keeps coming back. Other than that the psa is 0.6 it won't go to zero as the prostate is still there. After prostate removal it will be on zero. The consultant said it will be another 18 months till we find out if treatment was completely successful. If psa is still as low in 18 months he said only 10% chance of it recurring.
Sailor_Sam Pepasan
Posted
Although it was obviously a stressful and frightening experience, it could have been so much better than it was.
Sailor_Sam alfred5
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Whilst I'm happy on Active Surveillance now, I was just like your husband and was at various times going to have Brachytherapy or have it removed - changing my mind on a weekly basis - it's such a difficult decision. I will probably have to get treatment at some point but for now I'll carry on rolling the dice.
Anyway, best of luck to you and your family. Hope you have a very long and happy future together.
alfred5 Sailor_Sam
Posted
I'm sure prostate removal would have been much worse. We were not really spoken to about this option. Not a bad thing. I read so many men on the prostate cancer uk site forum asking which treatment to go for. Nearly all chose prostate removal. I can't understand why really.
Best wishes to you. Hope you have many years on surveillance.
Sailor_Sam alfred5
Posted
Good luck