I have been on an informal plan of watchful waiting since 2005. I have a number of co-morbidities including, Traumatic Brain Injury (TBI) from car accident in 1997, hereditary iron overload which has damaged my liver and pancreas, NASH, pre-diabetes and the most concerning to me is I have been recently also been diagnosed with early stage dementia.

I have a young wife and a 9 year old daughter. The most important consideration in the decisions I have made and will make is to preserve the quality of life for my family during the time I have at least some mental capacity.

My PSA history 1.9 (1/92), 2.7 (1/05), 6.4 (1/12), 7.6 (1/13), 7.0 (1/14), 8.1 (1/15), 10.0 (4/15) and 9.1 (7/15). They started doing the fPSA in 2012 and it's been between 10 and 14%. I have been getting up to pee 4 or 5 times a night for the past 20 years and have a minor bother with LUTS, although it's getting a little worse each year. The DRE in April shows firmness...whatever that means.

Obviously the Doc's have been pestering me to have a prostate biopsy for a very long time but I have refused. Not because I have any particular fear of the procedure (I had a liver biopsy last summer which is more difficult and required a day of outpatient hospitalization) but because it appears to be a waste of time and exposes me to unnecessary risk of admittedly rare side effects which could severely diminish my QOL.

From the PSA numbers it appears to me that I probably have the indolent form and the odds that PCa will kill me are much much lower than the odds that liver or pancreatic cancer or something else will get me first, or the most likely scenario where I develop full blown dementia in a few years.

I have agreed to see my primary care provider and continue the PSA testing every 3-6 months to mostly satisfy my own curiosity. I am currently having all the brain studies redone in an effort to get a handle on how long I will remain functionally capable.

I know this is somewhat off topic but seems to me there are probably more than few men facing the dilemma of whether they will die of or with PCa and what the journey could be like. In my case I might not remember any of this in a few years so having it written down somewhere might not be a bad idea. :)

The PSA in January 2016 is 10 again has been 9 +/- 1 for the last few years so it's not to concerning.

I also had a brain MRI done in July 2015 and Neuro Phsyc Testing done in October 2015.

The MRI showed microvascular changes involving the "periventricular, deep, and subcortical white matter" with "global cerebral volume loss." When compared with a MRI done in June 2005, a "progressive sequela of brain atrophy and microvascular disease was noted." From what was explained to me a brain MRI cannot really differentiate between the various forms of dementia but they think the findings are consistent with vascular dementia. This is relatively good news but also a bit unsettling, instead of the gradual decline of Alzheimer's I'll likely wake one day and the brain will be gone. I won't know what happened and will spend my remaining days lost in a strange place.

The neuro psych testing shows a progressive decline of my scaled IQ by a point or so a year, it's down to 109 so theoretically at least, I have 10 plus years of average intelligence. The effects of the TBI remain stable when compared to the last testing; "His mental processing speed is deficient. This slowing affects his ability to function across the board causing his thinking to be effortful and inefficient. This slowing means that he may not be able to track the normal pace of conversation or keep up with the events of life as they pass by in real time. The slowing is across all cognitive and mental domains although he has been able to compensate due to his considerable residual abilities."

Clearly my mental capacity is decreasing faster than the PSA is rising but the decrease is not occurring quite as fast as I thought it was. It's possible that instead of full blown Alzheimer's in five to seven years I may have a chance of 10 plus years before the vascular dementia sets in.

I've adjusted my thinking a bit to reflect the latest testing. It continues to make sense not to seek any treatment based on the slowly rising PSA. By waiting until I become symptomatic before I seek treatment I will still have a relatively high chance of 10 year survival. However, if I am mentally incapacitated when symptoms appear, an additional 10 years of survival is the last thing in the world I would want. If I get a condition that will kill me within a few years without treatment but treatment could prolong my life for ten years then I would probably do it if the effect of treatment on my quality of life was minimal.

I have been having a lot of pain and numbness in my arms, legs and and lower back for the past couple of months. Wasn't supposed to see my PCP at the VA until January but I needed to refill a couple of prescriptions that had expired and happened to mention the problems in my email requesting the refills. She said it would be a good idea to set me up for an appointment to get X-ray's of the areas given my PSA history.

The x-rays were negative for metastasis but they did reveal extensive bone spurs through out the spinal canal and in most of my joints. A particular concern is my neck showing severe degeneration at "C6/7, associated with 75% right-sided C6/7 neuroforaminal osteophytic encroachment." There were similar finding though less severe throughout my spine. I have also been having a feeling when I pee that I need to go again right after but nothing comes out. They measured my bladder and its retaining about 200cc. They think this could be caused the effects of the dementia, or from the spinal cord being squeezed, or from the enlarged prostate pushing on the urethra. They also did an EKG which when compared to one done a few years ago showed some changes possibly related to the brain or nerves.

I did not have any real concern for mets so I just went in to humor them. I was expecting them to just tell me I was getting old, take Tylenol for the pain, give me the lecture about having a prostate biopsy and send me on my way. Instead they scheduled me for a neurosurgery consult, a cardiology echo and stress test, slapped a 1 month heart monitor on my chest, taught me how to self catheterize, and gave me a prescription for Finasteride. They did not bug me about the biopsy... although the PSA was 11.18 up from 8.68 three months ago. I think the increase was due to banging up the prostate while learning how to self catheterize, the blood for the PSA was drawn a hour later.

For those who might need to self catheterize as part of their treatment, its not to bad after the first couple of days, if anyone has any questions about it I'd be glad answer them

I must say in my case I'm glad that I have put quality of life over quantity of life in dealing with the prospect of PC. I think the neurodegenerative changes to my brain and spine are likely to get me before any PC that I may have. I don't presume to ever tell anyone what their treatment choices should be, that is everyone own very personal decision. But for those who may have other health issues I would advise against making a quick decision regarding treatment/non-treatment. You never know what is going to be around the corner..

I'm planning to continue to watch and wait on the PSA while I get a better idea of the ramifications of the other problems...my provider thinks I need to have the neurosurgery by December but I'm not ready to decide on that yet.

In the meantime I make the most of every day and prioritize my little family.

Not much to report since last October continue to watch and wait.

I really don't pay much attention to the ailments, the urologists and neurosurgeons have written me off as a "difficult" patient refusing treatment.

Last April I had a 3T MRI that found a single 6mm PI-RADS 4 lesion, plan to use it as a base line for comparison in the distant future. Still taking the Finesteride, it has dropped the PSA over the course of a year from 11.18 to 4.00 (8 when doubled).

The neurological decline continues, need to self catheterize 4 to 6 times a day. Had urodynamic testing in September which showed no obstruction but a total failure of the bladder to work...they called it a neurogenic bladder.

Making the most of every day, happy with the path I have chosen and living my life in a way that is best for me and my little family...

Still watching and waiting on the prostate issues PSA went up a bit (8.1 to 9.6 March to October 2018) but then it could go down next test. Neurological decline steady, testing showed a few points off the IQ this year, but been able to find manual labor work so not really an issue. Still self catheterizing due to neurogenic bladder, they put me on a CPAP which was a bit of a surprise, but brain is starting to forget to breath when I'm sleeping I guess.

Family is doing great, they don't know anything about possible prostate issues, the mental decline is something I can't hide anymore but just tell them I'm getting old :) Living every day to fullest and treasuring every day I have with them while I'm still cognizant.

Scheduled for prostate biopsy at VA in January 2019 but I'll cancel like I do every year.

Nothing to report really, PSA continues to slowly creep up mental capacity continues to slowly decline. I'll be turning 69 this week and very glad I chose the course I have. It has definately worked for me but certainly would not advise anyone to do the same.

Have become more introspective as the three guys consider my best friends and have known for 50 or 60 years all have late stage cancer..prostate, kidney, luekemia and are undergoing various forms of treatment.

Back in July I started to get a bit dizzy while working and mentioned it to my provider at the VA. They scheduled me for some labs and I asked them to throw in a PSA as it had been a couple of years since I'd had one. Well it came back 9.9 and I'm still taking the finasteride so that would make it around a 20.

So they scheduled me for a 3T MRI, which showed the previous Pirads 4 was now a 5 and there was another Pirads 4 on that lobe and there was a new Pirads 5 in the other lobe. Well my curiosity got the best of me after refusing a boipsy for 16 years so the did a 21 core MRI targeted biopsy a couple of weeks ago.

The biopsy results: 3+4=7, GG-2 , 12/21 cores positive (57%). Unfavorable intermediate. Lymph node involvement risk 13% and extracapsular extension risk of 73%.

So they have scheduled me for a bone scan and CT of the liver and lungs next week when I'm down there to meet with the vascular surgeons because apparently the dizziness that started all this is due to 75% blockage of the carotid arteries.

I'll see what the vascular surgery guys say but my present thinking is that I'll consider treatment as the stenosis is far more likely to kill me or stroke me out long before PCa will, plus it cant be good for the dementia.

The VA has set me up with a consult with a bunch of PCa specialists next month so I'll see how it goes.

For me given my situation I've been pretty lucky over the years and continue to be happy and content with my choices and most importantly my litte family.

I have decided it's time to get treatment, I have ruled out surgery.

I met with a local Radiation Onocologist a couple of days ago. Because I'm unfavorable risk intermediate he said it would be wise to get treatment now and said hormone therephy and then radiation is the recomended option. I explained to him that I needed to work for at least 5 or 6 more years for at least 200-250 hours a month plus my family obligations and I needed to be as side effect free as possible. I did not want hormones because, being in my 70's and taking hormones for 4 months to live an average of 8 months longer ten years from now didn't make much sense with my cogmative decline and other medical issues

He agreed and is setting me up for 28 treatments of moderate IMRT hypofractionation. I have to go in two weeks to have three gold seeds shot into the prostate and SpaceOAR injected. Then I do a simulation a couple of weeks later and after that I will go up to the hospital for about 30 minutes Monday through Friday for five and a half weeks.

The VA has been bugging me to do a colonoscopy. I asked the radiation Doc about it and he said as long as its just a screening colonoscopy he'd recommend waiting at least 6 to 9 months after the radiation treatments are complete which makes sense. He also made what I thought was an interesting observation, he said to warn the folks doing the colonoscopy not to sample anything on the wall abutting the prostate unless they are positeve it was cancer. He has seen fistula's and other nasty things from an overeager colonoscopy.

I'll see how thing go, hopefully I'll be done with this for at least 10 years....

Well I finished the 28 IMRT treatments to the prostate and seminicle vesicles on April 7th. I'm out here in the sticks but the hospital did have a Varion VMAT machine so there were only two passes and most days I was done in less than 10 minutes. I'll go back in July to see what the PSA will be and then every 3 months.

I really didn't have any side effects to speak of other than feeling worn out, was still able to work 40 to 50 hours a week with 8 to 10 hours a day on my feet. The ability to work during any treatment was a priority for me and was the main reason I refused the recommended ADT. They did prescribe Flomax due to the nuerogenic bladder and concerns with retention but didn't have any real problems.

Actually, the biggest problem was going in with a full bladder every day, early on I'd be squirning around abit but kinda worked it out with time and practice.

Before I started I was getting a dull ache in the groin and hips that I would notice while at work, after a few weeks it went away. The Doc wasen't sure why thought it might be the prostate shrinking....he also said he could not say I was "cured" but I probably won't have to worry about a reoccurance for 5 or 10 years which works for me.

So I'm pretty happy with the treatment choice I made given my co-morbities and progressive mental decline. Still focused on my little family and prioritizing my present quality of life as the mental decline has slowed but if I live long enough I'll wake up one day lost in the canyons of my mind.

Hopefully, the treatment choice I've made won't come back to bite me in the a** as the last thing I would ever want is to be a burden on my little family.

Jwrhn's e-mail address is: jwrhn1951 AT gmail.com (replace "AT" with "@")