Any forums on "Non Treatment of PCa"

I remember reading the stories of a couple of guys on YANANOW who were not pursuing treatment. I don't remember the specifics of their PCa.

It's called "Watchful Waiting." It means the only interventions will be palliative- for bone pain, preventing fractures, restoring urine flow, etc.

This nomogram gives expected survival if you take no curative measures:


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

A lot of people describe prostate cancer as the most over-treated disease. The idea is that there are a lot of cases of prostate cancer that are diagnosed and unnecessarily treated, with the implication being that many of the guys who are treated for PCa don't need to be. If they were untreated they would live out their lives just fine, without the awful side effects of PCa treatment.
I'm sure there are cases of unnecessarily treated PCa, but there is one statistic that really impresses me -- since the onset of widespread PSA screening, the mortality from PCa has plummeted. In 1993 there were 39.3 deaths due to PCa per 100K population. By 2013 it was down to 19.2. Navigate here for all the data:
https://seer.cancer.gov/statfacts/html/ld/prost.html

It will be even lower now. In other words PCa mortality has dropped by 50% over 20 years. That's pretty amazing, and it says to me that even if some cases of PCa are overtreated, PSA screening has saved a lot of lives, and extended a lot of lives. If you forego treatment there is a significant chance you will be okay, but also a significant chance that the cancer will kill you. It's also possible that the cancer will kill you even if you treat it. It's a matter of unknowable probabilities. My own choice has been to seek treatment to try to cure my cancer, even knowing that it might not be successful, and knowing that the odds of a successful treatment are not great, and that the treatment itself is unpleasant.

Post Edited (fiddlecanoe) : 9/10/2017 7:29:43 PM (GMT-6)

It took me a year. During that year....I cancelled...

1 SBRT date for treatment in NYC
1 Proton date for treatment at Proton Headquarters 3 miles from my house
2 different surgery dates at John's Hopkins
1 Surgery date at Mt. Sinai, NYC (on this one....I actually made it to the operating room...and was laying on the table....and had been given the first drug to put me out.....5 seconds before the second drug was to be administered.... that would have knocked me out....I got groggledly got off of the operating table....and told the guys...."I cannot do this" ..and unsteadily...walked right out of the hospital and onto the streets of NYC....600 miles from my home)

During that year....I bet I had 12 consultations as well....in different treatment modalities


I just could not bring myself to change my body. I just had *REAL* reservations about doing this. During this time....one lurker....who had been following my story....emailed me. He told me he wasn't going to treat his. He was so....at peace. I connected with him more than anyone I had talked to here on the public forum. He was just absolutely .... content and at peace.....with no agendas....completely transparent...and i LOVED that.

I couldn't do it...and I couldn't *not* do it. It felt like i had been cornered.



Finally....after cancelling *another* surgery .... 5 miles from my house....I jumped. I went over there...at 5 AM in the morning....and let them cut the prostate out of my body.

Life hasn't been the same since.

Trouble is...I was 3+3 in 3 cores. They all told me i'd be upgraded to 3/4...and I was. you got 4 cores of grade 4. I don't have to tell you that's not a great clinical path. You could be 4/4....or probably at best....50/50 3's and 4's.

the chances of you needing more treatment are significant. With those 4's.....it's a tough place to be.

I just hope you can find some peace with this. It's like fighting....a 3 handed boxer. It just seems no win.

I had some sort of premonition....this wasn't going to go my way. I was right. I would do it again though. It's tough living with something that's growing inside one's body.....and never knowing when it's going to make it's presence known.

Just a note.....even though i had the surgery....now....my prognosis probably has not changed all that much. They cut through the tumor during surgery. So....what was once prostate contained....the way I see it...all I actually accomplished with treatment was cutting those cancer cells loose in my body. So I got all of the "benefits" of surgery....with none of the good.

I'm 100% continent. 50% ED. Which would probably go up....but what's the use....it's difficult to take LOL drugs to look at girly pictures.

I don't know if this helps or not or if I outta just erase it and not say nothin'. aaaah....I've spent all this time typing'....might as well hit submit.

In the end, we have the power to make a choice that best suits our needs and feelings. Stay true to yourself. I wish you well. Denis

I'm not sure I agree with the first line in this post saying "I am not really referring to AS as that almost always is guys waiting for the time when treatment becomes viable."

Ideally, AS buys an entire lifetime of time. Now if the cancer ends up progressing then they may have to shift to treatment, but I don't think guys go into it thinking it will just be for a few years.

Hey 142 thanks.................That's what I am looking for.

Three and a half years ago I was initially dxed with a PSA of 232.

I just stopped going to the doctors, and treated my self. Initially, i had great success. 4 months after dx, I had the PSA down to 101. I was incredibly naive, and was disappointed it was still so high. Then I made my first mistake. Since I had lost quite a bit of weight, went from tall and lean, muscular build to very thin, and women I barely know were coming up to me and saying "Are you sick? What's wrong with you, you don't look healthy. Alarmed, I changed my protocol completely to put on weight. The PSA shot up, Then, for a long time, over a year, it was back and forth, back and forth, and settled into a range of 150 to 165. I became complacent, but still tinkered with the protocol, until I made another mistake, and in a couple of months it shot up to 254.

At that exact point, my urethra started shutting down. 7 months later, my urethra shut down completely, and I landed in Emergency. PSA was 228, still lower than at dx two and half years before. The urologist was a nightmare, and inflicted great harm on me, from which I never fully recovered. He used an oversized catheter, and refused to to admit his mistake. Felt like a broomstick up my ass. Before long, my body figured out how to eject the catheter. I went through 5 in 4 days, and was in Emergency four consecutive nights. One time I addicentally drove off a road, and was trapped on an embankment in my vehicle. While I was waiting for the tow truck, I felt the catheter, which the uro had put in a few hours before, working its way out. Felt like I was sitting on a sharp edge (where the balloon meets the tube). Also, constant UTIs. By the time I got a new uro, the nerves in there were permanently damaged, and urination has been extremely painful in the nine months since then, as well as a major frequency problem.

My next and worst mistake was taking Casodex. Because of everything I read about Lupron, I would not take it, but casodex seemed harmless, or so I thought. Initial results were good, PSA dropped to 29. But after 7 weeks, it turned around and started going up at a very fast rate (tripling every two months). Then I tried Fosfestrol. Good results for 3 weeks, then it was defeated and the PSA is climbing fast again. I have no doubt my cancer would defeat Lupron in short order, and then I'm a dead man. The ADT drugs are like sending my PCa to grad school for a PHD.

Meanwhile, I had Green Light Laser ablation of the tumor to improve urine flow. Great result at first, but six months later the flow is down to a trickle, and I am having it done again next Monday, when I am also having bladder stones removed.

Except for the Green Laser, every other treatment has been a disaster. But I am still fighting, because I am a born fighter.