Treatment Vs No Treatment

Hi All,

I'm new here but have been reading so much on this network and other similar and am wondering why not much is said about not having any treatment at all when diagnosed with PC.

Please don't call me irresponsible because I am not and in fact, I am weighing up what treatment I am going to do. I'll put up another post about that later. However, I came across another website tool that supposedly gives you a life expectancy if you do nothing after you have been diagnosed with PC.

this is the website

webcore.mskcc.org/survey/su...

I thought that I'd just try this out and see where I fit in. I don't have any health issues at all, so ticked all the right boxes. I included my 4+4 (GS=8) and all still localized.

Here are my results:

I have a 59% chance of surviving 10 years, 23% chance of PC taking me out and 18% chance of being taken out by something else. (I assume that could be a heart attack, car accident etc)

For surviving 15 years, I have a 39% chance of surviving, 33% chance of PC taking me out and 37% chance of being taken out by something else.

Now if you have a GS of 7, those survival chances are incrementally far better.

So then, has anyone decided to forego treatment in favor of a better quality of life and are still with us after say 10 or 15 years and are here on this forum to talk about it? As I said, I'm not going to throw caution to the wind but I must say that these results astounded me as I was always under the impression that intermediat & high-risk PC if left untreated will take you pretty quickly. That does not seem to be the case if this website is accurate.

Would love to hear some thoughts about this.

[Tall_Allen]

Because quality of life is perhaps more important than length of life to many of us. It is not a quick death, and that is the problem.

For a high-risk man like yourself, if you get definitive treatment, say HDR brachy boost therapy with 1 year of adjuvant ADT, you will probably experience some irritative urinary side effects that may last for 1-2 months, loss of libido and hot flashes for a year. After that, there will probably be no side effects attributable to prostate cancer or treatment. Something else may kill you.

If you forgo treatment now, you will become metastatic within 5 years. Usually metastases settle in bones which become painful and fracture easily. Fractures may occur in the spine or pelvis and may cripple you. To prevent that and relieve the pain, you will permanently have to have hormone therapy. Organs (e.g., kidneys and liver) will be compromised eventually as will your immune system, and all of your blood. This can take 8 years. Your life becomes about your disease. You may live the same amount of time, but you probably will not want to.

[Hidden in reply to Tall_Allen]

Thanks Tall_Allen, that is a very good answer and something that everyone should read if they are thinking of doing nothing, but still have a good 20 years ahead of them.

I have posted another query about trying to hold off from HT till after my retirement, hopefully you might see that as well and give me your assessment.

Thanks again.

[Tall_Allen in reply to Hidden]

I replied that your worries are misguided.

[MackworthGuy in reply to Tall_Allen]

I agree with TA. My father had PCa at a time when we didn’t have all the treatments that I hope will work for me/us. While ADT and radiation did wonders to prolong his time, the last year was nothing I’d wish on anyone. Between pain from metastases, draining fluid filled lungs and losing 110lbs he really didn’t have in excess, it was an ordeal for him and for us who cared for him. The emotional strain on my Mom was incredible. It’s one thing to say my odds are even for dying of something, and a whole other to think about what way we wish to go. I wouldn’t judge anyone who foregoes treatment for whatever reason they discern, but would hope they made that decision fully informed because you can’t change your mind halfway through and it impacts everyone around you too. It was one of the hardest, but also most meaningful times of my life.

[Hidden in reply to Tall_Allen]

Hi TA, I am really looking closely at your suggestion of HDR Brachy Boost with RT but I note you also state to use HT as well. This website seems to suggest that HT may assist with the above treatment but isnt conclusive that it should be done. Do you have any info on whether the HT really does add benefit to this type of treatment? As you can see I'm trying to somehow see if HT can be avoided. Also if anyone else is reading this, have they done this form of treatment and if so, what was the outcome and how did you go with the side effects?ncbi.nlm.nih.gov/pmc/articl...

[Tall_Allen in reply to Hidden]

There's been improved data since 2014.

It now is proved that at least a year of ADT markedly improves results. I know several guys who have done it, and they all had good results. One guy had urinary issues that he fixed with hyperbaric oxygen.

prostatecancer.news/2022/01...

I don't understand your unwarranted fear of a year of ADT.

[Hidden in reply to Tall_Allen]

I know i seem a bit obsessed about HT but there are quite a few on this forum who haven't faired well with this treatment and when you look at the potential life-changing side effects such as heart issues and bone problems, you have to ask if the treatment really is going to make a real difference. Having said that, I also am aware that there are many people like yourself who coped remarkably well with HT and so I guess the more we weigh up all the scenarios the more easier it will be to make a decision. Also TA, how long after a biopsy can you expect to get an accurate PSA reading? I have heard it can be elevated for a couple of months or so. Plus blood in the semen can also be expected for quite some time. Is this correct?

[Tall_Allen in reply to Hidden]

People write on forums when there is a problem, not usually when things are going well.

Why do you want more PSA tests?

Yes, blood in semen can take a month to clear out, and is very yucky.

[Hidden in reply to Tall_Allen]

My Radiologist suggested another PSA test prior to treatment starting (not sure why he asked for that) and yet my urologist said that PSA levels can remain high for a long time after a biopsy. My biopsy was on August 16th.

Also I still have blood in my semen albeit getting less and that is now close to 8 weeks after biopsy.

And thanks for your input. 👍

[Tall_Allen in reply to Hidden]

I'd wait 13 weeks to be sure for a PSA.

It goes from bright red to brown to beige. I masturbated frequently to get rid of the dried blood.

[Hidden in reply to Tall_Allen]

Thanks TA - nothing like a bit of honest feedback. Everyone loves your work by the way! I reckon if you put a Dr in front of your name, many men folk would pay to sit down with you and get some clarity on the direction they need to take. Thanks heaps.

[Tall_Allen in reply to Hidden]

Thanks. I run live support groups once a month for men with prostate cancer in the Los Angeles area.

[Mike58 in reply to Tall_Allen]

👍

[dentaltwin]

A lot of this relates to age and general health. You could be lucky, like my dad, who was diagnosed with advanced PC at about 80. He was relatively healthy, but he was 80. He had had a signal that he MIGHT have PC maybe 10 years before, and he ignored it. He was treated after his diagnosis (ADT), lived another decade and died at 91, NOT of PC. But he was lucky. IDK what percentage of men diagnosed with advanced PC do as well. Seems to me that his decision was easier to make at 80 than it would have been at , say, 50. Prostate cancer ain't generally a good way to go.

[Lizzo30]

there is alot of over treatment Personally I think the best thing to do is have a cancerous prostate removed surgically then go on a Japanese type diet - tofu, non dairy, fish, watermelon turmeric red wine etc to keep it at bay

[maley2711]

I think you raise an important point. There is lots of talk about which treatment would be "better", but why do Docs not 1st have an honest discussion about the watchful waiting option......especially for men maybe age 75+, where life expectancy is somewhere 10-12 years...if you are in good health at 75!! 2years of immediate ADT can seriously impact QOL IMMEDIATELY, whereas the metastatic cancer pain, etc sould be a number of years down the road...especially if you carefully monitor your PSA and have appropriate scans if PSA shows significant movement. And no guarantee at all you won't have serius radiation SEs.

Ah for crystal balls!!

[maley2711]

I see that you are age 65....... so more likely you will have more years of good QOL/survival compared to short-term SEs from treatment. For the 55 yr old man, the balance is even more favortable for treatment, IMHO.

BTW, on his blog, TA posted a review of studies of delaying initial treatment by up to one year...the conclusion was/is that even for a one year treatment delay, results were almost identical to immediate treatment.......and this applied to both high risk and low risk PCA patients!!

[Hidden in reply to maley2711]

This is all so interesting. But the question will always be, - When is waiting to long going to be. In 1 year, 18 months or 1 month? How do you know when this stuff is going to break out? Could be tomorrow, could be in 5 years. If only there was a way of knowing this. But I'm guessing there isnt any way and so you can see why we all go into panic mode and want treatment done "yesterday" !!!

[j-o-h-n]

From Papa Google:

Life expectancy at birth in the United States declined nearly a year from 2020 to 2021, according to new provisional data from the National Center for Health Statistics . That decline – 77.0 to 76.1 years – took U.S. life expectancy at birth to its lowest level since 1996.

youtube.com/watch?v=aKmJxpK...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/09/2023 7:07 PM DST

[maley2711 in reply to j-o-h-n]

Yes, but as you know, when we make it into the 70s, and have normal health for that age, our life expectancy is 10-15 years...and I have learned that life expectancy is that time when 50% of a certain group will have died, and 50% will surpass that life expectancy.

Nice picker upper!!!! Must admit I don't remember it.

[Derf4223]

YMMV