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I feel like Advanced PCa Dx is weeks away

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Posted 7/1/2013 5:34 PM (GMT 0)
Hello everybody.

I'm a 36 year old male and since April of this year have been experiencing intermittent right side hip pain, lower back pain and urinary symptoms.  These include urinary frequency, incomplete bladder emptying, dribbling, some nocturnal urination, etc.

I'm currently under the care of my Urologist. I've been going through the process of elimination.  So far he's eliminated bacterial Prostatitis and any issues related to my bladder.  Multiple Urinalysis have come back normal as well as multiple DREs.  During the process he has prescribed to me Flomax to try and resolve the symptoms which didn't do too much for me.

I recently had a Urodynamics Study.  This was NOT fun in the least.  I believe there was a suspicion of Overactive / neurogenic bladder.  My muscles however were completely normal.  No indications of neurogenic bladder

When the Urologist sat me down to go over the test results, he looked at me and said "You're blocked and I need to treat your prostate".  I have a Bladder Outlet Obstruction.  When he showed me the results of the Urodynamics study it showed a huge increse in pressure upon emptying.  The pressure indications were in the red... especially when the last bit of water was coming out.

He began to discuss the varous forms of treatment.  We won't know yet which to persue because he has to look at the anatomy of my prostate.  This means I need to have a Trans Rectal Ultrasound done on my prostate so he can see where the enlarged area is. 

Of course the methods of treatment I'm not liking because they all result in decreased or full retroejaculation.  I'm only 36... This is NUTS. The urologist saw how unhappy I was and mentioned I wasn't the first patient my age who had to have their prostate treated this way.  He mentioned there have been younger patients than myself with this problem.

Before leaving the office he also gave me a script for a PSA test.  Although he didn't mention anything about PCA to me, he did dicate into his tape recorder that I was being sent for  PSA.  If it returns high we'll perform a biopsy.

Now I''m really really worried here. 

I'm worried that i'm going to be Diagnosed with advanced PCA with Bone Mets at 37.  My dad is perfectly  healthy and I have no older brothers.  I am overweight but that I believe is my only risk factor. 

I've had a few xrays done on my hip and lower back.  All came back normal.

Has anyone experienced anything similar and what was the outcome?  Do I have a real reason for thinking about advanced PCA?  In my mind everything seems to be lining up for the end.

Any advice is greatly appreciated.

Thanks

Nick

Post Edited (NickT76) : 7/1/2013 11:38:50 AM (GMT-6)

Posted 7/1/2013 5:42 PM (GMT 0)
My advice, don't go there, you're mind is working overtime. heck if you can't wait for the run of tests, due to anxiety,which is quite understandable, insist on a biopsy now so as to eliminate that possibility. It would be better not to follow that advice, it would be better, in this case, to hang in there with Uro, His protocol seems prudent.
Posted 7/1/2013 5:42 PM (GMT 0)
Odds of prostate cancer at your age are remote.
Seek another opinion if you feel the need. No harm in that.
Posted 7/1/2013 6:01 PM (GMT 0)
No, Nick, no.

The chances of you having prostate cancer at your age is close to zero, possible? Yes. Likely? Highly improbable.

The chances of you having not only prostate cancer, but advanced prostate cancer with bone mets? Almost willing to say zero, but nothing is ever impossible.

Your head is getting way, way too far ahead of the facts at this time. Follow your uro's lead, looks to me that he is systematically working his way through your prostate/urinary issues, like a good uro should.

Keep us posted, you are worrying yourself to death with very little real data to go by.

david
Posted 7/1/2013 6:44 PM (GMT 0)
Hi Nick, welcome to our place.  First and foremost I would agree with what others have said about hold on and slow down.  Sounds to me like your URO is on top of things, and IMHO you need to let the test results get completed before hitting the PCa Panic Button.  I'm also not sure I would try to tie in some of the symptoms you are having together towards worries about having advanced PCa.  You stated that "I am overweight but that I believe is my only risk factor" - and that alone could be adding to some of the symptoms you are describing.

I took a couple of minutes to try and understand what you may be going through and I found the following study from the NCBI on "Urodynamic studies in the evaluation of young men presenting with lower urinary tract symptoms."

http://www.ncbi.nlm.nih.gov/pubmed/16771719

While not sure if this is exactly relevant to what you're going through, I'm at least trying to make a point about again, slow down and educate yourself on what is going on with your body.  Best ways to do that are to engage with qualified/experienced medical professionals - and to increase your knowledge base on the topic(s) dejour.

Best of luck to you and please keep us posted; if we can help, we sure will - but I'm guessing your application for membership in the PCa club will be denied!

Posted 7/1/2013 6:54 PM (GMT 0)
Hey Nick,
Sorry about your situation, just thought I'd let you know you're not alone here. When I was first diagnosed I self diagnosed myself and gave myself less than 24 hours to live, I googled pain in feet, lower back and a couple other places and thought the emergency room would buy me another 24 hours if I was lucky. Well, after 6 hours there and a costly bill I found out I had a degenerative disk and a couple other non PC related issues. I learned to stay away from the Internet when it comes to self diagnosis.
Posted 7/1/2013 6:57 PM (GMT 0)
There is very little chance of having advanced prostate cancer at your age. I would ask for a Free PSA blood test (higher is this test.)
The ultrasound should determine your prostate size. PSA divided by prostate size produces PSA density. (lower is better on this number.)
There are some good books by Scardino, Walsh and Marks, all doctors. You may be able to get 1 of these at the library.
Anyway, one day at a time. Good luck.
Posted 7/1/2013 7:00 PM (GMT 0)
Bladder outlet obstruction can cause PSA to skyrocket, so I'm not sure why he'd perform a biopsy just because your PSA is high. PSA also increases due to BPH, which may be the source of your bladder outlet obstruction. The prostate in the area surrounding the urethra can enlarge and interfere with the flow. So I'm sure that your PSA is almost certainly elevated now, but that does not mean you have PCa.

Your Uro might want you to take a Proscar or Avodart to shrink the prostate. This won't give you retrograde ejaculation as alpha-blockers might while you take them. They do take a while to shrink the tissues (several months). The physical procedure they sometimes do is called a TURP where they ream out a wider opening.

- Allen
Posted 7/1/2013 7:07 PM (GMT 0)
Hi Nick! Being overweight does put you at higher risk for advanced PC, but you would be an extreme outlier at your age to have anything other than a small amount of PC which is associated with normal aging. It’s never too early to start learning about men’s health issues/prostate cancer, and based on my first sentence  you’ve now learned two important facts that many 36-year olds are clueless about : 1.     The increased risks for being overweight…more likely to get diagnosed with PC, more likely to get advanced PC (but both of these later in life).   One of the first things that men are commonly told by many of the most knowledgeable doctors treating PC today is to take a PC diagnosis as a “wakeup call” and change your lifestyle choices of diet and exercise.   There are many men here who responded via significant weight loss after their own new,   post-wakeup call commitment.   Never too early for a “wakeup call.” 2.     The cell de-differentiation known as "prostate cancer" is a normal part of aging for most men.   Autopsy studies of men who died in accidents showed that the percent of men with “clinically detectable” PC approximately equals their ages/number of decades of life.   In other words, about 40% of 40-year olds, and about 80% of 80-year olds (and similar results between these ages) have what could be diagnosed as prostate cancer if they had reason to have a biopsy.   Most did not have a biopsy, and for many they never knew that they had PC and it was unlikely to ever bother them.  (There is also, of course, a small percentages of the cases diagnosed with advanced PC...it's about 10% of cases today.) You’ve already started your own journey about learning more about men’s health than many men ever thought they wanted to know.  You've got urinary issues to deal with, but it seems very unlikely that it's being caused by advanced PC. Best wishes…      
Posted 7/2/2013 3:35 AM (GMT 0)
Nick,

Like you, I was carrying some extra pounds...about 215-220 on a six-foot frame. While I was actually diagnosed with PCa at age 54, I was having similar pain in my lower back, right hip and right thigh. The first thought I had was metastasis even though my PSA was relatively low and now zero.

In getting a CT scan and xrays prior to prostate surgery and then another set one a year later before radiation, it was determined that I have lumbar spine degeneration and that is the primary cause of the hip and leg pain. Some of that is a result of a back injury while playing basketball in my 30s but some because of weight issues and the dreaded Dunlap disease. (My belly Dunlap over my belt.) I'll probably see a neurologist later this year but am starting with weight loss to get down around 180 and take off some of the pressure.

I just mention this as it is easy to let your mind run wild and think the worst. Also, just noting that there could be a correlation between weight and the pain issues. Of course, you will learn more in the coming days.

Keep us posted.

..
Posted 7/2/2013 2:11 PM (GMT 0)
Thanks for all the support everybody. This is a very scary time for me. I feel like I'm way to young for any of this to be happening to me. Yes I have put on alot of weight in the past few years. I'm up to 315 pounds for a 6'3" frame so I guess all this extra weight could be causing me alot of this hip and foot pain.

These urinary issues seem way to conicidental to me which is why it all seems to be lining up to be the worst. I guess I've been spending way too much time on the internet researching this. I've found way too many nightmare stories on the internet about these "rare" instances of PCA in someone under 40 and the outcomes.

I guess I should stop surfing. Nothing much will change except getting myself really upset.
Posted 7/2/2013 2:19 PM (GMT 0)
Nick,

No disrespect intended, but your weight alone could be causing or increasing some of your issues. Especially some of the pain that might be orthopedic in nature. Plus, could be the root cause of some of the urinary issues. (I am far from perfect weight wise, still need to lose 25-40 lbs, so not picking on you).

I would advise considering a good heart healthy Mediterranean style diet for starters, regardless of what is found to be wrong, it would be a healthy way to eat in the future.

We need to keep you out of the club here, not because we don't like you, but because no 36 year old guy needs to have PC or even be thinking about it. Hope we can keep denying you membership.

david
Posted 7/11/2013 2:57 PM (GMT 0)
Hi everybody.  I know you have all been waiting patiently to kick me out of the club. 

Tomorrow is my Free and Total PSA blood workup.  I can't begin to tell you all the anxiety I'm feeling.  Over the past week this darn pain in my right hip seems to be bothering me more and more. 

I really have this stupid feeling in the back of my mind that this advanced PCA diagnosis is just around the corner and it's invaded my hip bone.  What a gift this would be for my 37th birthday.

A strange turn of events and symptoms has occured since my urodynamic study 2 weeks ago.  What do you all think of these?

1.  It does seem that some of my urinary symptoms have improved just a little but.  It's not to the point where I feel 100% but I don't find myself peeing every 30 minutes or my bladder throbbing or feeling like I"m not empty 100%.  I have been drinking plenty of water but it's just very strange.  Me with my anxiety is thinking this is the tumor breaking off of my prostate and now it is traveling all over my body.  I'm back to 2 hours or more in between bathroom trips unless I drink a large amount of fluid at once.

2.  Although some of the discomfort has gone away why the hell have I started to get up at 4am every morning to pee.  This has started over the past week.  for the most part it's been once  but occassionaly twice...ugh

3.  Hip Pain.... this is my biggest sticking point to advanced PCA with bone mets.  The pain does come and go but again this week it seems to be really bothering me.  I have been able to goto the gym (treadmill, walking, etc).  Its just a constant ache in the right side of my hip, especially when I stretch.  This is 3 months already.

4.  Lighheadedness... This is new to me... ugh.  Nerological workups have been normal but I've read advanced cancer causes lightheadedness, tiredness, etc.

Thanks everyone for listening to me.  Any advice would be appreciated.

 

Posted 7/11/2013 3:20 PM (GMT 0)
 

NickT76 said...
Any advice would be appreciated.   

  

Advice:  Use this episode as a "wake-up call."  Make immediate lifestyle changes.  You are extremely unlikely to have advanced PC, but being overweight you are "stacking the odds" against yourself by putting yourself in a high risk category for advanced PC in the future.  The fat surrounding the prostate of overweight or obese men with prostate cancer provides a favorable environment to promote cancer growth. 

Dr Michael Kattan (medical statistician, nomogram developer, now with MSK) wrote in the Journal of Urology, "Age, fitness and body weight have a far bigger effect on survival than PSA, Gleason score, or any type of treatment.  The diagnosis of prostate cancer should be taken as a helpful wake-up call encouraging men to improve their diet and start exercising."

Dr Mark Moyad wrote this in an PAACT Newsletter (an online communication about PC):

Remember, that when you exercise regularly this is an investment that is put into your health bank and constantly gains interest regardless of your weight. So again, exercise regularly (30 minutes a day) and if you do not initially lose weight then no problem because it all still counts in terms of increasing your chances of living longer compared to individuals of similar weight that do not apparently have the time to exercise.

 

Also, this is a great study for all those people that love to tell the story of some unhealthy person that lived to be 100 years old. Sure, this can happen, but for every unhealthy person that lives to be 100 there are hundreds of other unhealthy people that never lived to be 40 years old because they were not taking care of themselves. And, for all those people that love to tell the story of one young healthy person that died young, there are hundreds of other stories of people that lived to be very old because they were taking care of themselves. All of this stuff basically comes down to probability, and of course no one is given a guarantee that they will live longer if they exercise and maintain a healthy weight, but who gives a darn - I am going to side with the higher probability here and I refuse to side with the improbable here because most of us live by trying to increase our odds or improving our probabilities.

 

Furthermore, you are at a higher risk for heart disease which kills more than 10X the number of men in the US than prostate cancer.

You may indeed have some urinary issues going on, but every one of your symptoms may also be amplified by your weight.

Keep this quote in mind: 

Life is NOT like a box of chocolates.  It's more like a jar of jalapenos.  What you do TODAY can burn your ass TOMORROW.

 

Posted 7/11/2013 3:36 PM (GMT 0)
Casey, you just said:

"Keep this quote in mind:


Life is NOT like a box of chocolates. It's more like a jar of jalapenos. What you do TODAY can burn your ass TOMORROW."

this has to be one of your better ones, it actually made me laugh outloud, and it takes a lot to do that with me. really funny, but so very true

david
Posted 7/11/2013 3:42 PM (GMT 0)
Nick,

I think your imagination is getting carried away again. Perhaps you are researching too much, and reading too much into what you are finding on the net. It's a very common thing before someone has a full diagnosis.

At your age, even just having PC would be rare (not impossible) as we have all told you before. But the chances of it being advanced to having mets (your hip pain i.e.) is all but non-existent.

Feel you are just scarring yourself at this point.

As far as your hip pain, if it were bone mets big enough to cause pain, it wouldn't come and go like you describe. That would not be typical.

On the positive side, what is your next official step in your process? Anything going on besides from the next blood test?

Casey gave you excellent advice above, on some tips for your general health. Tips that apply to all of us.

Good luck, and steady nerves ahead. Start planting some positive thoughts in your head, tell yourself you likely don't have cancer, and your other symptoms are separate from one another, and they can be treated.

david
Posted 7/11/2013 3:47 PM (GMT 0)
When my mind tries to take over my body, and it does, I remember the words from the old 60''s tune Take it easy, don't let the wheels of your own mind drive you crazy.
When my body tries to take over my mind, and it does,I beat it back with exercise………….. of the will. This works with the first variant also.
Posted 7/11/2013 3:53 PM (GMT 0)
Thanks guys. I do appreciate letting me talk about this. My next step from the urologist is a TRUS. He needs look at the anatomy of my prostate to see what is causing my Bladder Outlet Obstruction and determine which treatment option is best.

Aside from PCA fears some of treatments for my prostate are not favorable. He mentioned no matter what treatment, there is going to be some level of retrograde ejaculation, either decreased or full based on the location of where the blockage is.

Hopefully I can prevent surgery right now. I'm too young to have that side effect
Posted 7/11/2013 4:03 PM (GMT 0)
We are here for you, Nick, regardless of the outcome(s). Just trying to help you stay with the voice of reason, during this difficult time of uncertainty you must be going through. That's why its nice to be able to bounce off your thoughts and fears to us.

david
Posted 7/15/2013 8:01 PM (GMT 0)
Hello everyone. I just got off the phone with my Urologist and it turns out my PSA was normal. It was 0.6. I asked if I should get PCA out of my head and he said no worries there. My Ultrasound (TRUS) is this Friday. Hopefully we can get pinpoint the enlarged area of my prostate and fix these urinary symptoms once and for all.

Reflecting on all of your feedback this is going to be a huge wake up call for me. Weight loss and cutting back drastically on my alcohol consumption are in the very near future for me. I guess I can only hope I haven't done any permanent live damage to myself at this point. I guess I can put PCA out of my mind.

I guess my membership is going to be revoked... at least for now
Posted 7/15/2013 8:06 PM (GMT 0)
Sorry, no perm. membership for you, lol. but feel free to visit us anytime you wish, and keep us up to date. yes, if nothing else, let this be your wake up call to healthier eating and living, it certainly can't hurt anything. and I hope and pray you stay away from the PC side forever.

Good luck ahead, that PSA of .6 is great for your age.

david
Posted 7/15/2013 8:16 PM (GMT 0)
You're right. There's nothing we like better than running off young whippersnappers such as yourself. Surely a young guy like yourself can think of other things to use his internet time for.

I dunno...

Or maybe search for Gary Taubes in Amazon. If you are tired of being fat...
Posted 7/15/2013 11:54 PM (GMT 0)
Discovered during my initial ultra sound testing, I had a growth, described as a "knuckle" or "nub in the median lob that was the cause of my urinary issues. I minor green light laser procedure took care of that. It was a trim, not a full haircut, which significantly decreased the chance of side effects. If you have something similar, first make sure there is no cancerous tumors in that region and remove only the area necessary.
Posted 7/16/2013 12:18 AM (GMT 0)
Great lesson for you Nick, apply it to every facet of your long life. Sufficient unto the day
Posted 7/16/2013 2:25 AM (GMT 0)
You have our blessing to go forth and multiple.
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