re: Metastatic Prostate Cancer spread to bones

Thanks for sharing man. I would love to hear about it. I’m not interested in the medical weed stuff just yet as we aren’t at that point now.

How is your family handling that? The diagnosis has been anywhere from 3 months to 5 years so it is hard to grasp. We are still super early.

It has been hard for me to not break down every couple hours. I’m trying to stay strong for my wife and kids but it is hard to even process or function right now.

Jscrims@gmail.com

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"There are still very limited prostate treatments available should you start having issues." ---- Treatment has come a long way. Many good options if the cancer is confined to the prostate. Once it has gone other places the situation is much more difficult.

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I know this is the medical professionals line but when you actually ask them about those good options all of a sudden they will start talking about the weather. Yes, there are basically the same options which have existed for years and they all come with side effects most men under 65 would find difficult to live with...so for most men the best option is what they call "active surveillance" which means a PSA test every 6 months, maybe a DRE (if you don't know, don't ask) and a biopsy every 12th - 24 months. When the PSA gets above 10 most doctors will suggest its time for treatment and the options are basically what they have been for 60 years. It is possible today to focus radiation more precisely and chemo is less likely to be as rough but the survival rates are about the same...very high....with the same side effects...very hard to live with.

Prayers

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Anybody know anything about this? Someone close to me has been diagnosed with this and I’m wondering what that is going to look like. It is absolutely devastating news but I’m trying to figure out what to expect? The internet has given me some info but I wanted to hear some first or second hand accounts instead of medical jargon. We are still super early in the situation other than the diagnosis. Bone scan is being done and some other tests as well so just trying to put it together and put one foot in front of the other to move forward.

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Probably treat with external beam radiation and will most likely "seed" the suspect area with metal (gold) that allows that radiation to be focused on the tumor and suspect areas with less impact to the surrounding area. With metastatic prostate cancer to surrounding bones they may also use some hormone treatment to relieve pain and slow the spread. Even with metastatic prostate cancer it is not necessarily a death sentence. If a man can live with incontinence and erectile dysfunction, usually temporary (6 months to a couple of years) prostate cancer, even in advanced stages, is about as treatable as cancer gets....but the side effects of all treatments are unpleasant, depending on the individual.

I will probably regret doing this but I think it may help someone.

My father had prostate cancer and was diagnosed in his late 50s. With this in mind I had an DRE and PSA exam done shortly after my 42 birthday at a Army Clinic in Germany. No problems. I fathered a child the next year...at least my wife says I did, the little girl looks an awful lot like my German neighbor but she is mine regardless (just kidding, she is really my daughter). Life was and is good....that little girl is my entire world, along with her older brother.

About 2 years after she was born I received a letter from the Army telling me that I needed to have the test done again, that something in the process was not handled correctly and the results may not have been correct. SO I did it again, same results. Good.

2 years later the Army doctor calls me personally and tells me that I need to be tested again. I tell him I was and the results were the same. He tells me that is good news because the original results were not good. This is concerning to say the least so I get the tests done again....this time my PSA is almost off the charts...about 30 if memory serves. My urologist tells me don't worry, that cant be correct. It wasn't, it was actually only (only in relative terms) 4. But at 4 a biopsy is indicated despite the DRE being seemingly normal (As I have found out a DRE is basically useless unless the same person does it and does it regularly....to the same patient). So, I have the biopsy...nada. Great news, right? Not so fast....PSA is still above normal and now the DREs indicate some enlargement....I have never had any urinary problems and have never got up in the middle of the night to urinate. So this urologist refers me to a friend at UCAL Medical Center. I put it off another year and finally go to MD Anderson in Houston. They do the same spiel...DRE, PSA, and the PSA is now pushing 6, an increase of 33% in 12 months. Concerning, as was the DRE. SO, another biopsy is in order...and this time it comes back with some questionable cells which is a diagnosis of cancer. Scared me to death....thought sure I was done for. Then I am told, at MD Anderson, arguably the worlds leading prostate cancer treatment center, that this is merely a clinical diagnosis, that it is in no way life threatening and in fact does not even indicate that I do indeed have cancer....basically I know no more than I did before hand. And, unfortunately, neither do the pros.

So they do all sorts of tests, MRIs, genetic testing, and a MRI guided biopsy which shows NOTHING. Nothing at all. I take this as good news...not so much. It seems that prostate cancer is really almost impossible to actually diagnose....unless a biopsy says unequivocally it is present they simply do not know. So we start talking about treatment and of course the radiologist says radiology is the only way to go, the surgeon wants to schedule robotic surgery that week....and then a PA tells me that I will most likely be on the "active surveillance protocall" which basically means wait and see what happens!!! SO, for the last 5 years I think (I don't think about this very often) I have had PSA tests done, and they are all over the place from a low of 3 to a high of 7, so many DREs I don't even notice them any longer (yeah, its possible) and....the scariest part....5 more biopsies, 3 of which have been inconclusive and 2 which were identical to the first two. I have been to MD Anderson, Oregon Health University, Emory and the University of Washington and they all tell me I most likely have prostate cancer but it is not definitive....and I can either be treated, or not, either way it really makes NO DIFFERENCE other than, if I get any treatment, they all agree I will probably be incontinent for a while, from 6 months to several years, and will probably have some erectile problems, again, from 6 months to permanent.

Needless to say this has been somewhat frustrating and, unfairly, I let my urologist know in no uncertain terms it was simply unacceptable...I have the money and the insurance to get the best medical treatment on the planet...and no one can tell me for certain if I even have cancer. I go on the theory that I do, for what good it does me, and continue the active surveillance, but to be honest I don't know if I will ever have any symptoms and if I will ever seek treatment. He was very good when I blew my top and, taking an interest in my case, contacted the Army Doctor....and come to find out I would have the exact same diagnosis 14 years ago MOST likely, given the test results that they had and botched. SO, I would have gone through this for 14 years (not that it is that bad, but it can be very troubling at times thinking you have a ticking time bomb on board and no one can tell for certain). And, had I been told 14 years earlier and sought treatment as most people would....my daughter most likely would not be here today.

So the point is there ain't no good answer when it comes to prostate cancer. There is no definitive test, only tests which indicate the presence of cancer, unless the test says unequivocally there is cancer present, and even in that case the treatment is usually uncalled for unless the individual cant live with the thought of having cancer.

My "cancer", if it exists at all, and the medical profession cant tell me one way or the other to date, is not progressing, has, apparently, been present for 14 years, and other than costing a lot of money and anxiety from time to time (my wife, kids and I do not think about it much any more, this was not the case initially) is no more threatening than, say, going duck hunting in a small boat alone. So what is the point in all of the testing???

I would get tested were I to have a second choice but at the end of the day my case is not unusual. Most men would have sought treatment by now and most of that treatment would have been unnecessary and would have cause all sorts of problems that I personally would prefer not to live with....

when it spread to uncs bones, they stopped the fighting of it and focused on quality of life. prayers

There are newish treatments being tried that use immunotherapy. It teaches your body to attack tumor like an invader such as a bacteria.

I've been told it's bad.

I had a high PSA test (17.1) in April of last year. A bone scan was ordered and the results scared the shite out of me. Ultimately, the "lit up" areas were considered to probably be from old injuries, but it caused some very anxious moments. More testing - MRI, CT, Gleason score - had the doctor rate me at Stage 2. A welcome relief, but still disturbing.

I've had 6 dozen radioactive pellets injected into my 'taint, 5 weeks of external beam radiation, and a year's worth of Lupron (hormone) injections. I have an appointment on Monday, 11/23 at 4:00pm to tell me if it all worked. The nail biting has already begun.

Overall, and reasonably aware of other cancer treatments, I consider myself lucky. But it hasn't been any fun and I wouldn't wish it on my worst enemy.

Good luck to your friend/family member.

That isn’t necessarily what I wanted to hear but I appreciate you sharing. I just hope he isn’t in pain. I don’t know if I can handle the thought of the goodbye part yet.

Did he have any symptoms or signs before he was diagnosed. I’m wondering if it is a similar situation and hoping we can buy some more time.

I don’t understand your analysis: my dad was diagnosed in the early 1990’s was treated and he’s still living.