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Posted 6/7/2009 2:51 PM (GMT 0)
Hi everyone,
I'm 43 and found my psa at 4.3 on a routine blood test. My Dr. referred me to a Urologist who felt abnormalities on the left and right side of my prostate during a DRE.
I have a biopsy scheduled for later this month. I;m really stressed out. After a lot of reading, I've convinced myself that cancer is the probable cause. The docter said about 50/50 but I think he was taking it easy on me.
Thanks for listening.

Subject added by James C.

Post Edited By Moderator (James C.) : 6/27/2009 1:52:20 PM (GMT-6)

Posted 6/7/2009 3:02 PM (GMT 0)
Crewa2, this is a great site for information and support. Glad you found us, but hope you don't need us. The biopsy can confirm or rule out cancer. Until then, try not to stress out. I know that's easier said than done. You'll find that the biopsy prep is worse than the actual procedure. Try not to worry about that either. Good luck. I hope the biopsy comes back clean. Hang in there.
Posted 6/7/2009 5:08 PM (GMT 0)
Thanks for the replys
Do you think I should go for a color doppler ultrasound for the first biopsy or have the TRUS first?
Posted 6/7/2009 8:15 PM (GMT 0)
I'm in central Florida, anybody have recommendations for doctors.
Posted 6/7/2009 10:09 PM (GMT 0)
crewa2:

In the Orlando area, my surgeon was Stephen Baker at Orlando Urologists (orlandourologyassociates.com). Another doctor in the area is Rakesh Patel at Winter Park Urology (wpurology.com). A radiation oncologist that specializes in prostate cancer is Patrick Kupelian at MD Anderson (orlandohealth.com/MDAnderson).

There are lots of good people and a wealth of information and experience online here, so keep in contact.
Posted 6/8/2009 12:23 PM (GMT 0)
I'm glad I found this site, thanks for the help and I will post my results.
Posted 6/8/2009 7:31 PM (GMT 0)
Crewa2,

It is very normal to be worried; we were all worried when we first found out but this is a great site to get advice and just get a sense of what's going on in the world of PC, whether or not you have it.  Clearly, you need to get a lot more information and you need to make sure that the doctors do the biopsies in places that are the most logical.  My doctor recommended a rectal MRI, which also helped with the operation when I needed it.  Hopefully, everything will be non-cancerous, but having just had the operation in April, I found that having caught it early - even the worst case wasn't so bad.  Good luck.

Posted 6/8/2009 9:17 PM (GMT 0)

Highly recommend to anybody either wanting to know about or maybe diagnosed with PCa , read DR. Strums book: A Primer on Prostate Cancer..The Empowered Patients Guide (2nd edition-search the net).  You will find plenty of excellent information as to what this 'jungle' of PCa is. He is an oncologist of world class proportion and even helps on the internet with his free advice /opinions on PCa patients digests submitted on the net. Anyway the book is amongest the best for patients to read and he is not selling you a treatment proposal, just information.


Posted 6/10/2009 2:08 AM (GMT 0)
welcome crewa2,

Educating yourself is very important at this stage.  If you have a companion that can help you through this, that's great, get them educated too.  My wife was actually more prepared than I was.    

It is difficult not to worry, but continue to maintain a healthy diet and get some exercise.  It should help you sleep better.

I wish you the best,

DS     

Posted 6/19/2009 7:05 PM (GMT 0)
Had the biopsy today, glad that part is over. Should have some results in about a week. It went pretty much as other posts I have read online. I did take a pain killer and a valium which helped. Doc still felt the nodules during the DRE. They took 10 samples (too few?), not much pain from the needle but I did have a strange pain in the tip of my penis with each jab. The tech told me my prostate was about 19 grams. Hoping for good results.
Posted 6/19/2009 9:13 PM (GMT 0)
crewa2, Since it appears you may be starting a little Journey with us, I changed your title subject for easier archiving and searching

Hoping for a big negative on your results, by the way smilewinkgrin
Posted 6/19/2009 11:14 PM (GMT 0)
Glad to hear your biopsy went okay.  I just had mine on Tuesday.  I had a little blood in my urine and had a lot in my only ejaculate since Tuesday.  I'm told all that is normal.  I had no pain all week.  Get my results on Tuesday.  I am 45 so we're in the same boat.  Hope your's are all clear

Posted 6/19/2009 11:25 PM (GMT 0)
to crew and bates, good luck as you wait for your biopsy results, may they both come back with nothing!

and the pain to the tip of the penis from the biopsy snips, i still remember that well from the 3 biopsies i took in the past
Posted 6/20/2009 12:11 AM (GMT 0)

Hi crewa2,

I hope your biopsy results are completely negative. I'm not trying to add to your stress, but biopsies can sometimes result in false negatives. The pain or feeling at the tip of the penis is normal during biopsy and DRE. I had it with biopsy and all DREs.

Good luck. This is a good site and lots of knowledgable people here.

Mike 

Posted 6/25/2009 4:14 PM (GMT 0)
Well I got the bad news today. 5 samples from the left side positive 3+3, the 5 from the right side were negative. I'm not really sure where to go from here. My doctor does HIFU in the Bahamas and is suggesting that.

Should I have the slides reviewed by another lab?
Posted 6/25/2009 5:04 PM (GMT 0)
Oooh! That HIFU in the Bahamas raised red flags for me.
It may be that you have the right doctor and that HIFU is the right treatment for you but it also may be that your doctor has a significant financial interest in directing you to a particular treatment and place.

This is not to say anything against your doctor, but these facts would lead me to get an independent second opinion.
Posted 6/25/2009 5:19 PM (GMT 0)

Dear Crew:

Sorry for the bad news...it's unfortunate that you have to join our club, but I know you will get plenty of advice and support from the folks on this site.

First of all, with your Gleason, PSA score and prostate size you probably have most all treatment options open to you.  So, don't panic or jump at the first possibility.  HIFU is certainly an option but, as you probably know, it is not FDA approved in the USA.  And, despite the hype from the HIFU docs and sites, my understanding when I researched this as a possibility for my treatment was that there were indeed side effects...particularly in the ED area.  I guess my point here is not to dump on HIFU, but to make sure you keep your eyes open and recognize that ALL treatment have some side effects.  You need to research the options and make an informed decision.

Now that you have the diagnosis, you should set off to learn as much about the disease and options as possible.  Walsh's book is a good start and a good primer.  My advice is that you also make sure to get some other opinions/perspective re treatment.  Your guy is HIFU-man...great, now you have that perspective.  You should consult with a prostate oncologist (who has no dog in the hunt re bias for treatment), an experienced surgeon and an experienced radiation oncologist.  Yes, it's literally a PIA to go thru that but this is a HUGE decision and you want complete info before making it.

And, experience counts...big time.  If your provider has not done 250+ procedures do not choose them to do one on you.  Let them learn on someone else.

Finally, re your pathology, you have to do what you feel on this one.  Perhaps one or more of the other docs with whom you consult will help you re verifying the expertise of the lab you used.  There are some well known experts, e.g. Epstein at Hopkins and Bostwick in Richmond that you could use.

Hope this helps a bit.  I sure many others will weigh in.  And, if brachytherapy gets on your short list, there are a few of us here who have some experience with that...you can read my journey by clicking the link in my signature.

Good luck.

Tudpock

Posted 6/25/2009 5:35 PM (GMT 0)
crewa2....What Tudpock stated is the best advice you could ever receive. Take your time and follow his advice and you will be very glad that you did.

Best of luck to you in this next phase...it's a long one and difficult one. You will be on information overload for awhile, so once you have taken it all in...take a few days off and the right treatment plan will come to you. One that you feel will be the best for you.

Sorry you became a member of this club...but now that you are here...welcome aboard.
Posted 6/26/2009 12:44 AM (GMT 0)
While this is not a good news to get, the alternative would be far worst. If you have cancer, but biopsy does not find it. I had 5 of them over the course of five years - all negative. When it was detected, it was high grade and a lot of it. Sorry you have to go through this, but it is far better to do while cancer is in the early stage. Best of luck on your decision making. I can only re-iterate the earlier advise - you have some time and a lot of options, so take your time making the decision - it is an important one.
Posted 6/26/2009 1:34 AM (GMT 0)

Hi Crew,

So sorry for the news.  It is good news, however, that you seem to have caught this thing early.

You may wist to carry or send you slides to another facility for a second opinion.

With a low PSA and good Gleason score you do have many options.

At your young age, you want to do your homework and get the treatment most effective to give you the best chance for a cure.

As was mentioned here, HIFU is a very interesting option.  I just wonder if there is enough practice and follow-up studies to give you the confidence you need.

The links in one of the frozen forum topics above provide information on various treatments and success stories and statistics.

You do have some time to make an informed decision.  Likely several months.  I did make a treatment decision for my doctor rather quickly, but I did visit with several other health care professionals to discuss whether or not my treatment decision was appropriate for my situation.

Our thoughts and prayers go out to you as you make an informed decision.

Remember, there are no "dumb" questions here.

Best regards,

Posted 6/26/2009 11:25 AM (GMT 0)
This is a hard decision, so much information to take in. I have ordered an information kit from the proton center. Right now I'm considering proton and robotic surgery. My urologist kind of put me off with the HIFU when he told me he needed a decision in the next two weeks.

From what I've read so far, if I'm a viable candidate for proton beam therapy, it sounds promising.

Anyway, I'm just starting out on this journey and have a lot of research ahead of me.

Thanks for listening
Posted 6/26/2009 1:41 PM (GMT 0)
Run Away Screaming!!!!

OK, you have got a urologist who knows that you need HIFU -- not as part of a legitimate clinical trial (and thus subject to medical oversight) but at a special offshore clinic which he just happens to run.

Then he tells you that this "special offer" is good for only two weeks!

Does anyone on this forum see any legitimate reason that crewa2 needs to be treated with such haste?

Oh, sometimes if the two weeks only doesn't pull the marks in they will offer you a "free" one week beachfront vacation to go along with your operation -- if you haven't got that pitch yet, hold out for another week and he'll probably throw in a set of super kung fu slicing and dicing knives if you order in the next twelve minutes.
Posted 6/26/2009 2:30 PM (GMT 0)
I would have thought that the prostate could do with a bit of rest after a biopsy I was told at least 4 to 6 weeks for an operation would this not apply to HIFU
Posted 6/26/2009 8:00 PM (GMT 0)
Hi Crew,

This sounds fishy to me. The 5-6 health care professionals I talked to said that I had several months to make a decision and get treatment. I believe my condition was like yours or even less urgent in terms of pathology.

From what you've told us, I would take my medical reports with me and go get a second opinion from an experienced oncologist or surgeon or both. You should be able to get a few recommendations. It's your future.

Kind regards,
Posted 6/26/2009 8:06 PM (GMT 0)
I had to wait 8 weeks after my last biopsy before my operation
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