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Should you be scared to death? Heaven forbid. Concerned? By all means, "Yes".
I have no idea what resources you have available to you, but if I were in your shoes, I would be looking around high and low for a second opinion.
I would suggest that you ask for a 3T-MP-MRI. If your current Uro won't write the lab order get another Uro. If they find a suspicious spot on the MRI you could then get a targeted fusion biopsy. Ignoring a continuously rising PSA of almost 70 is not in your best interest.
Thank you for the new MRI tip --- I had heard of MRI guided biospsy, but not the high res 3T MRI version you mentioned that by itself can be used diagnostically. I will have that discussion with a NEW doctor in two weeks.
As a followup question - for men who have normal DRE, how many biopsies were performed before a positive result?
I ask because from what I have found in published on-line studies the number is rather high: often three or four 12 or 20 needle biopsies. Worse, that some cancers are not found at all, untill they have metastasized and invade somewhere else.
One would think that if this 3Telsa MRI were so successful at finding tumors, no rational/sane doctor would do a biopsy until after a positive MRI result.
My guess is that these machines are rare, expensive, unreliable (requires well trained operators), or all of the above. Any of which will disqualify their use for most insurance companies.
Sorry - bad mood - yesterday neurologist confirmed nerve damage from L5-S1 disc herniation that has bothered me since 2008 ... after his nerve conduction tests, he also diagnosed a C7 herniation or bone growth causing my arm-shoulder pain other docs a week earlier had said were muscle strains and I just needed to exercise more.
I should be jumping for joy - at least I have one doc who thinks I might have real reasons to be seeing doctors. But after fighting the low back and leg pain for 12 years ... all with this prostate question looming ever larger ... and now the shoulder freaking out on me ... I've lost faith in our medical institutions. It feels like I am in a Benny Hill skit with the private vs public health care wards.
Latest numbers are 76 total and 7.6% free... 10% change in 5 months. I go in for an MRI next week - though it's only a 1.5 Telsa machine. Doc is looking for lymph node implications prior to biopsy. I am guessing he thinks it's already metastatic - or if I try to be optimistic - it's not metastatic yet and that the MRI may show where to concentrate the biopsy needles (fewer pokes).
At first one doc said a few benign looking nodules on one side, and a few lymph nodes larger than normal, but didn't feel biopsy was indicated - I was pretty happy. Then when he understood my PSA history, he quickly changed his mind, instead suggesting they were what he now called marginally suspicious and should be biopsied. Why the about face? Because he personally has never seen PSA at 76 without PCa being present.
Another two docs - my primary urologist (and radiologist) - said he knows of cases where PCa has been diagnosed simply on an MRI like mine, but recommends biopsy just to be sure. Pretty sure he wants to poke those lymph nodes.
All told, sounds likely mine has escaped ... and is involving other parts of my body.
Will have one more chat with the doc before submitting to a 24 needle biopsy. Still a 10% to 15% chance they'll miss sampling a tumor. My reading suggests if it is already out, then there is little point to RP and the biopsy only tells me how aggressive they think the cancer is; basically setting the timer to 6 months or 2 years (pretty sure I've used up 3 or 4 of the typical LE years because I knew there was an undiagnosed issue in 2010, and had I gone in for annual biopsies they would have discovered it a few years ago).
I really wish they knew what the hell they are doing with this disease.
Hell - it may finally be my time to go buy that GTR, add a dual purpose nitrous kit, then go see the parts of the country I haven't yet visited...
ps: I should let everyone know I am missing the optimist gene... it has been my experience if something can go wrong it will go wrong. Even with early suspicions, my urologist at the time who has that optimist gene told me not to worry. And now here I am.
GW; I sense a lot of regret and distrust in your post and that is why this site is called "YANA" for "You are not alone". Not much can be done to change things at this point the way it sounds. It is disgusting that this is a situation where there are no experts and if there was, they aren't about to make suggestions due to not wanting to be liable. It sounds like mistakes were made along the way in your case but to be honest, who of us hasn't been there? It is hard to make the right choices under such pressure and at such a disadvantage in the ignorance we all have about this disease when diagnosed. I understand it must be hard to be a doctor and feel so helpless in most cases. It is hard to be brutally honest with patients at times I am sure but it is the best policy of course. Sparing would might be bad news is not being helpful. We should be appreciative that there are even doctors willing to pursue this line of medicine I guess with so much on the line and so little in the way of happy outcomes. Even the occasional cure comes at a price. My doctor's unforgotten quote as he left the room after stabbing my prostate a dozen times was, "We can't cure it but we can slow it down." Not very promising but then probably pretty accurate.
I am only guessing from what I have seen on this site that your situation does not call for a RP at this point. It appears that most higher PSA's with suspected escaped disease are treated with hormone/drug therapy and by the results on this site, it can indeed be slowed down for many years. There is no magic pill for this disease and each treatment type comes with its own set of disadvantages that are more disrupting than the disease ever was (except they won't kill you as the untreated disease will). There are compromises to be made but through it all, one might as well nurture a positive attitude whenever and however possible. What other choice is there?
I don't imagine I have said anything here that might be helpful to you. I hope I haven't said anything to make matters worse for you. Like Red Green says on his show, "Hang in there, we are all pulling for you!" Jon.
With your numbers it is likely that you will be staged 8 or 9, maybe even 10. It won't matter greatly whether the thing has escaped the prostate capsule. The treatment is likely to be the same ADT, RT and chemo, if you're lucky but not RP. If it turns out to be Gleason 9, like mine (your PSA is a bit higher than mine was) you will find that you have many years of active life ahead of you, but will have to learn to live with a chronic but not disabling condition, for which there are many treatments, more each year.
My oncologist said to me eight and a half years ago, "live for today and enjoy yourself". I have and do. I recommend tackling life with the same positive attitude. Forget the past and forget regrets - they won't help. Most likely something other than PCa will get you in the end. If you keep yourself fit and well apart from the PCa, you'll maximise the chance of that. Go for that GT, fella!
Thank you guys; Yes, I am quite upset with my first urologist. But I accepted his suggestion to ignore it. Other urologists I saw strongly recommended I take action; I chose the wait-and-see attitude. So I share some of the responsibility for my current state.
I'm trying to rush the next biopsy along - a 20 or 24 needle saturation - and based on some fair MRI data and a couple radiologists who have offered opinions, now at least my doc knows where in the gland biopsies need to be focused, even oversampled.
I was just told the place where my 'benign looking' nodules are is often overlooked in typical prostate biopsies or more likely where risk of nerve injury is greatest. So this biopsy has some chance of getting a good indicative core, as well as real side-effects.
The troubling part is that a few of the lymph nodes look suspiciously larger than others, approaching what is typical of tumorous nodes. The outcome of metastaic PCa isn't very good regardless; but knowing if it's the really aggressive variety or the less aggressive variety is what I am hoping to find out.
If treated, the aggressive variety seems to have a 2 year median lifespan after diagnosis (typically a positive biopsy). So that I am alive today says I'm probably not in that ultra aggressive category (the fact I feel pretty crappy and fatigued all the time counters that optimism). And anything less than aggressive has such a wide range of outcomes.
But my personality. me, I need something to plan around. I can't just 'live for today' as most people seem so easily able to do. All the uncertainties are simply overwhelming. And if treatment makes me feel any crappier - I'm already at the point I've given up all of the activities that I enjoyed and QoL isn't really worth waking up to - working on any of the options I have for moving forward will probably be impossible for me.
But knowing - I guess the "stage" - will be comforting in that then I may have the ability to make some educated decisions.
MRI shows a few benign looking anterior BPH nodules
TRUS Saturation Biopsy performed
Prostate Volume > 100ml
22 cores removed
- all cores negative for malignancy
- most cores show chronic prostatitis
- many cores show acute prostatitis
Recovery from biopsy is a serious pain - daytime frequency of urination/bowel necessity around 5 to 10 minutes for day 3 through day 8 (every hour on the hour at night). Day 9 daytime symptoms relaxing, but fever symptoms setting in (sore throat, headache, malaise).
Good news it isn't yet detectable cancer.
Bad news, it isn't yet detectable cancer.
I am in that unique group of men with exceptionally high PSA scores and undetectable cancer. That 1 in a 1000 or more group. So the doubt and associated anxiety will continue.
Doc is resistant to treating the prostatitis. Worried more about antibiotic side effects than an inflamed prostate and its side effects. Trying to get in to see a Health Sciences University for a second read of biopsy tissues and treatment options for a huge prostate that is chronic and acutely inflamed.