New Member, full of questions and concerns...

Hey folks - I have been surfing for any and all info re PC and am hoping I can get some mental relief here. We have a family history of PC: paternal uncle had metastatic PC into his bones and passed away. My father was diagnosed shortly thereafter via a PSA of 150, and has recovered nicely with time-release radiation therapy and hormone treatment (he's 74 now, this was about 8 years ago). Around the same time my older brother had a PSA under 4, but had a precautionary biopsy that showed 2 of 12 samples with PC. He underwent a Radical Prostatectomy almost immediately, when he was 44. All good now as far he goes, everything works, etc. When all of this occurred I was about 35. I am now 43, and have had a PSA done approximately every 6 months since all of the above occurred. Always been at 2.3. A month or so ago I tested at 2.6. Not so bad. Then about 2 weeks ago I started feeling some localized discomfort in the nether region - not burning, necessarily, but more of a dull internal ache in the family jewels and surrounding area that seems to migrate occasionally. I get no unusual discomfort when massaging the prostate externally. I have seen no blood, and experienced no outright pain or burning when urinating or ejaculating, though occasional discomfort afterwards. I asked my family doctor for a referral to a urologist, and was given an appointment 1 week later, coming up this Wednesday. I have spoken to them to see what to expect, which will be a general consultation, DRE (can't wait for that) and they will likely schedule a biopsy (really not looking forward to that either). My wife will be attending with me, which I've heard is a smart move. Obviously, there is a lot of concern based on the family history and even the very slight increase in PSA. I am also aware of the nasty little tricks the mind can play when you are looking into the unknown, i.e. was that ache in the legs there before, etc. Looking for some support from those who have gone before - what to expect from the DRE, biopsy, how the hell do you get your mind wrapped around this whole mess and most importantly do these symptoms sound at all familiar for PC? I have read page upon page on symptoms and have never seen anything that matches the odd irritation I am feeling. Any response would be appreciated.

Of course, the doctor didn't tell you to abstain anything which will stimulate your prostate for several days befoe a biopsy. That includes sex, bike riding, heavy exercise and, of course a DRE!! Stimulation of the prostate artificially increases the PSA reading.

Good luck.

-Les

GumbyDan-

There are reports that recommend a biopsy for anyone with a psa over 2.5.  My psa was 2.53 when I had a biopsy and I had 5 of 11 cores positive.  One thing I have learned over the last couple of months is that the quality of doctors varies greatly.  Do not forget that the person who finishes last in medical school is called doctor.  The best thing you can do to wrap your mind around this issue is to learn as much as you can so you can make the best decisions.  There is a lot to learn and it can be confusing.  The most informative book I have found is Surviving Prostate Cancer by Dr. Patrick Walsh.  Make sure it is the second edition. 

It sounds like you are on top of things, just remember that prostate cancer is curable if you catch it before it spreads.

-John

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Les - so I am correct in abstaining, right? (starting now)

Thanks for all the replies - good to have a place to discuss.

Navy John - yeah...with the family history I've always had a general knowledge, but boy am I learning more now...


Dan

Hey Gumby,

I was you just a few weeks ago.  Look for a thread titled "Just trying to get the straight facts".  All of the wonderful people here posted a lot of great info for me to get started.

So here's what I would do...  No sex, bike or heavy leg lifting for 72 hours before the PSA test.  That's the consolidated view I've put together from my hundreds of hours out here trying to get the facts straight.

Briefly, I had a general physical done and my PSA was 4.4 which is just over the limit according to the "standard chart".  Check my signature for all of the chronology and you can see my journey.  When I visited the Urologist he did a DRE and an ultrasound.  I asked the doctor to use extra lubricant for the DRE as I've had a couple of these exams and found that the urologist used copious amounts of lube and it was less uncomfortable.  At any rate all of the diagnostics that were done were not conclusive so the doctor recommended the standard 12 core biopsy in his office.  I did have my wife with me and it is a good idea.  Also bring a notepad or medical diary and a pen to take notes.

My father had very aggressive cancer at age 74 (Gleason 5 + 5 = 10, right now Gleason scores may not be familiar to you) so I thought it was a good idea to contact his oncologist, Dr. Moran.  He was very happy to treat me, and actually pursued me to come to him for a consultation.  Since I had 3 close relatives with PCa, Dr. Moran suggested a high density biopsy called a Stereotactic Transperineal Prostate Biopsy (I have a post about that too) and I asked for a repeat PSA for sanity (no luck there).  The biopsy was done under a general anesthetic and 42 samples were taken.  The recovery time for the procedure was really about 2 full weeks before complete normal.  I was back and functional after 2 days.  There's more blood involved in places where you aren't used to seeing any, and some bruises too.  Otherwise I really was not in pain, but a few days of fairly constant discomfort followed the procedure.

Above all find a urologist that you like, can understand and will take all the time you need to talk and explane things to you.  My doctor is very patient, smart and will take hours with me if I'd like him to.  I couldn't be happier or luckier.  Other musings I've made are in my blog in my signature if you are interested.

Be calm now and ready for your initial consult.  There is a link here on this site that is a list of questions to ask.  Questions to ask your doctor during all stages of evaluation and treatment: is the direct link.  Find the questions you want answered and write them down in your diary and bring them with you.  Make sure your wife gets them all answered.  You may not be "all there" at the time and she can be sure to cover the ground for you.

Remember, you don't know what is going on so you kind of have to live in denial until you do.  Pretend a bit that things are "normal" when your anxiety raises.  It helps... and "normal" happens to be the truth until proven otherwise.  Keep posting here and reading.  I turned to blogging to get the tension out.  You can find your own outlet.

 Oh and I have the same groin area pains that you describe.  I had an epididymal cyst a few years back and this feels exactly like it.  Dull pain that is fairly constant and episodic.  Nothing to keep you from functioning, but there is something going on.  When I find out what is going on with me I'll be sure to let you know.

Jim

GumbyDan said...
Jim/KC9,

Wow - thanks so much for taking the time to share your experience! I am doing my best to stay cool while beginning this adventure, though it is not easy at times. Yesterday was the first day in over a week that I actually was able to put some of the thoughts away and be my normal self (normal being a relative term :) ). Initial consult is tomorrow, so tonight will be full of reading and preparing my question list, etc. I will post whatever happens, as I am sure there are people in our positions who join this club unexpectedly, as we did, and enter full of confusion and anxiety. You all have helped me alot in the short time I've been in the room.

Dan

Dan,

I'm very happy I could help. It is very stressful and since I've been though it I can offer my thoughts anyway.

Stay cool, do some research but be sure not too much. I overindulged in the research and got too consumed with this. Right now you need to be prepared but really need to keep it light(ish) until you have something concrete to go on. Take it a step at a time, don't freak and be sure your wife is there to back you up. If you do that you have done the best you can.

I'll be thinking about you tomorrow and sending positive thoughts/prayers your way for good results and peace of mind.

Jim

Gumby Dan
I found the biopsy much, much easier than I feared. My urologist had done a sonogram a week or so earlier in his office and pretty much showed me what to expect and what the procedure was. I was cautioned about possible blood in stools or urine, discomfort, "leaking" etc for two weeks after the needle biopsy.....a few days later I has on a long airline flight....moderate walking and swimming...and no after effects at all that I noticed....my wife waited and drove me home after the procedure...from arrival at hospital until time of release probably 90 minutes......
Mbshine

Thanks again everybody - tomorrow is only the initial consult and DRE, biopsy will follow based on family history I am certain. I think the biggest fear is of the unknown, so I will be in a better place at least for knowing something, regardless of the results. That and the fact that there is nothing exciting (at least for this guy) about the "process", so to speak. Spirits are good (better, anyway), and again, at least the wondering can be put to rest.

That is really good news.  I am glad for you......Be sure to check back in 90 days, and tell us what that next PSA test is, ok?

Definitely a wake up call! That is exactly how I am seeing this, and you can count on my follow up. I have always monitored the PSA and have been conscious of my risk factor, but now I know so much more about what to look for, expect, etc. Best of luck to all...I'll be watching!

Dan

...Well good for you, I'm sure you feel relieved, in fact I know you do. I did the same thing about 8-10 years ago. Spiked up to 5.0, then it settled back down into the 1.2-3 range...family history and all that jazz(dad and cousin) My urologist told me at the time, "it's not a matter of if, it's a matter of when" and we started with the DRE, PSA's etc. Finally we found what we were looking for, so, in a sense...it was a success story, at least that's how I see it....(except for me getting alittle apathetic toward the whole process last fall and putting off my yearly appointment for three months, whew close call, don't let that happen)......I'm not trying to make you overly anxious about this whole experience, just stay diligent  of the facts and all you've learned over the past few weeks and don't let it consume you. Have fun man.......Good Luck to you and for sure let us know how you're doin' out there-Take care

Prior to my biopsy and eventual surgery I had 5 separate PSA checks over 4 months. One was an insurance test, another at the annual company checkup, and 3 others at two separate doctor offices. Three of the PSA's were 5.1. One was a 5.2, and one was an 8.1. The 8.1 was two weeks before the last one before surgery which was a 5.1. The second Urologist and eventual surgeon said it was not possible for the PSA to change that fast in that short of time. It became obvious that either the nurse got me confused with someone else's number, or there was some kind of malfunction. I have never heard anyone address the validity of PSA's but especially when discussing the results after a treatment when persons are making decisions based on very small differences it leaves a person a little on edge about what to believe.

So happy that your situation was caught before other measures were taken.

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04