What I've been waiting for. Estimation of life expectancy newly diagnosed men with PC.

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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.

http://prostatecancerinfolink.net/2016/02/16/estimation-of-life-expectancy-for-newly-diagnosed-men-with-prostate-cancer/

https://webcore.mskcc.org/survey/surveyform.aspx?&preview=true&excelsurveylistid=4

 

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  • Posted

    Thanks for this, Sailor Sam. I thought from the first link that this was only relevant for the newly diagnosed, but I did the questionnaire on your 2nd link and got a clear, and reassuring result. Brilliant!
    • Posted

      Hi Pepasan, I found it reassuring as well. None of these things are 100% guaranteed but I do think it's a useful adjunct to all the other information that goes towards the decision making process.

      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

  • Posted

    Hi Sailor Sam.

    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

  • Posted

    Hello. My other half was 57 at diagnosis. Gleason 3+3 psa 3.7 he was encouraged to do active surveillance. The consultant said being so young he will need treatment eventually. But after a few months he decided to take treatment. (Brachytherapy)

    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.

    • Posted

      Sailor Sam's link worked for me, and the questionnaire takes account of all the individual variants - I suggest you try it brfore you dismiss it. I would trust it as a good guide for life expectancy!
    • Posted

      Ah yes. I see what you mean. Life expectancy with no treatment at all. I was thinking of prostate cancer in general. As I said I've read of men where all treatment has failed.

      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.

    • Posted

      I agree with you that everyone is different but if you have a look at the article, they are talking about the "validation" of the tool. They only do this if they have explored all the different variables, and looked at all the research and meta-analysis of the diagnosis and treatment of Prostate Cancer. It's not something they can just come up with or is a "hyposthesis" - it's evidence based.

      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.

    • Posted

      I appreciate your ability to revise what you say in the light of more information - not something everyone can do!
    • Posted

      I find it a little puzzling that with a PSA of 3.7 and a Gleason 3 + 3 and aged only 57 that someone would opt for radical treatment and all the associated side-effects. I imagine there must have been other factors that influenced his decision.

      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.

    • Posted

      I'd say it's more about emotion than cognition! - but I agree with the point you make - not everyone is comfortable literally sitting on (the knowledge that they have) cancer !
    • Posted

      Yes you're right - it isn't comfortable knowing you have Cancer and it depends on what stage it's at etc.. but  if people could use some basic CBT techniques (self-talk) it could make them feel more positive about it.

      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.

    • Posted

      That must have been a big shock for you, initially. Because I've worked in Social Work, Health and Psychotherapy (some of it using CBT) I was already aware I need not be alarmed. Otherwise I think we have been in a similar position. Best wishes to you. 
    • Posted

      Hello. Well, psa was 3.7 in July. By Dec (2014) it has risen to 4.9. The consultant suggested waiting still but said he would need a much bigger biopsy as the 12 needle one can miss something.

      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.

    • Posted

      Shock - you're not wrong. I do think the Prostate Cancer Nurse could have been far more positive as well when informing me of the outcome of the biopsy. They just sat there looking concerned and gave no information whatssoever.

      Although it was obviously a stressful and frightening experience, it could have been so much better than it was.

    • Posted

      I can certainly appreciate your hubby not wanting any more biopsies. My God I thought it would never end and I could feel the needle going in each time although I'm sure you're not supposed to!

      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.

    • Posted

      Hello. Yes I think my other half sometimes wishes he'd stayed on surveillance. He's had a tough year. But coming out the other side now.

      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.

    • Posted

      Yes I agree with you. I will go for Brachy when and if the time comes. I think perhaps the reason some people choose surgery is that they have a second chance with radiation treatment if the Cancer returns or they don't get it all. Even so, I would still choose Brachy.

      Good luck

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