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Erfahrungsberichte

       
09.09.2015 9.10 06.07.15
I have been on an informal plan of watchful waiting since 2005. I have a number of co-morbidities including, Traumatic Brain Injury from car accident, hereditary Hemochromatosis which has damaged my liver and pancreas, and the most concerning to me is I have been recently also been diagnosed with early stage dementia.

My Doc's have been urging me to get a biopsy for years to positively confirm the diagnosis but I have refused. I know the risks of serious side effects are small but they are still significant and I choose not to take that risk as quality of life is more important to me than quantity. Giving myself a few extra years to live out my existence with the inevitable advanced dementia does not seem to me to be a good end game option. I can live with the fact that I appear to have a slow growing cancer that will never do me any harm while I know what is going on around me. I know some folks are unable to cope with any cancer being in their body and they want it out but for me not sweating it is the best option. Interestingly as the years have gone by the Docs have grudgingly come around to my reasoning, At my last check up in July 2015 my primary care provider made the comment that if I was a new patient presenting with my medical history they would not even bother to do a PSA given my medical history unless I specifically requested it.

I have a young wife and 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 and to do my best to prepare for their future. The best estimates at this time are 4 to 8 years before I will be unable to function mentally, I am undergoing imaging and neurological evaluations now and should have a clearer idea of what to expect in a month or two.

I will add more details as I have time. I suspect there may be others out there whose treatment choices may be influenced by the other health problems they may have and might find this of interest. If not then at least I'll have this stuff written down somewhere where I can refresh my memory...
       
21.01.2016 10.00 21.01.16
The PSA in January 2016 is 10 again it 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 Nuero 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 differiante 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 nuero 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.
       
24.10.2016 11.18 20.10.16
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 Veterans hospital until January but I needed to refill a couple of prescription 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 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, to take Tynenol for the pain, give me the lecture about having a prostrate 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 lecture 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 which I had done a hour earlier.

For those who might need to self catheterize as part of their treatment, its not to bad after the first couple of days and for me its probably good to learn and to have a supply of catheters so I would not need to go to an ER if I ever actually could not pee...

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 nuerodegenerative 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 check out all your options. You never know what is going to be coming at you around around the next 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 may need to have the neurosurgery by December but I'm not ready to decide on that yet. My attitude is that if a treatment can make a positive difference in my quality of life now I will consider it, but it treatment is worse than the disease I'll pass.

I continue to live every day like it is the last I will remember and spend as much time with my little family as possible.
       
10.02.2017 10.00 10.02.17
Just a quick update. Been taking 5mg Finesteride since last October. Met with Uro last week he said the prostate was smaller than expected and the PSA had dropped to 5. (Doubling it makes it 10). Still have chronic urinary retention and self catheterizing 3-4x a day. They are going to do a 3T prostate MRI and cytscopy of the bladder in the next few months.
Cervical MRI's can't pin point anything that would cause the retention and be surgically correctable they will do MRI of the rest of the spine soon but I doubt they will find anything they can fix.

The retention seems to be caused by the continued decline in brain function. As I noted earlier self catherization really isn't to bad once you get used to it.

I'm doing well enjoying life and the family and not worried about the prospect of PCa. Thankfully if its there, it seems to be very slow growing. However, the mental and physical effects of the dementia seem to be speeding up..
       
15.09.2017 9.58 15.09.17
Had a 3T MRI done in June it came back with one small lesion in left apex and a PI-RADS score of 4....significant cancer is probable. Still refusing to have biopsy. Still on Finasteride the PSA dropped to 4.79 from 5.0 in February (need to double the values due to the drug). So it remains pretty stable.
Had urodynamic testing done last week. It came back showing no obstruction but the bladder is totally non functional and I will have to continue to self catherize for the rest of my life. Just more evidence of the continuing generalized nuero decline and reinforces my decision to watch and wait.

Continue to live every day to the fullest, to be there everyday for my wife and kids and I hardly ever think of my medical problems...