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Initial Disgnosis - Dazed and Confused

tp23
Posts: 11
Joined: Apr 2013

I was suffering from some urinary symptoms so I vistied the urologist 1st time in Fall 2011.  PSA 4.7.  DRE normal.  Cystoscopy revealed nothing.  Stayed on Rapaflo for a while but with little benefit and feeling good, I stopped that and felt good for a year or so.  In the Fall/Winter of 2012/2013 the urinary and sexual symptoms got worse so I had a checkup.  Minor pain in lower abdomen when sitting.  PSA now at 4.2, all bloodtests good.  Dr prescribed CT scan.  Everything normal except for "prominent seminal vessicles".  Dr performed biopsy to rule out anything to worry about.  Just this past week I learned that 11 of 12 samples were positive and he mentioned gleasons of 8 to 9.  Obvioulsy, it's spread to the seminal vessicles.  He immediately put me on bicalutamide in preparation for a hormone therapy injection Monday.  He mentioned that he wanted to reduce the prostate before a radical prostatectomy after waiting a month or so after the first injection.  I should add that I just turned 50 this January.  My and my wife's heads are spinning.  He suggested a bone scan but felt that my insurance co won't cover at this time.  It seems to me that he is prescribing the most aggressive course of treatment I can seem to find - which is fine with me.  As I understand it, the initial bicalutamide is supposed to prevent a "flash" after receiving the hormone therapy injection.  The hormone therapy is supposed to reduce the prostate and make it more easliy "resectable" and will aid any required radiation treatments.  The prostatectomy will eliminate the affeted organ/tissue.  He can biposy the lymph nodes and other tissue while inside.  The raditaion and hormone treatments would round out the treatment if/as required.  I'm OK with the removal procedure.  Sexual function is already gone and minor incontinence is a small price to pay for a cancer free liestyle.  Everyone says get a second opinion.  I'm at a total loss.  I trust the guy, and he spent nearly an hour reviewing my results - not that I understood a word he was saying after I got the results.  After researching non stop for two days, I have so many questions for him when we go back Monday we may never get out of his office.  I'm lookiing into Sloan Kettering in NY and Hackensack Medical Center in NJ next week.  I need to check with my ins co regarding a second opinion as well.  I feel funny about confronting my Dr about a second opiinion when I agree with his prescribed treatment - I think anyway.  From what I can understand, removal of any affected tissue would still yield the best overall result, even if radiation and hormone therapy is required, barring the ill effects of the procedure.  I've looked into support groups in the area, but they all meet at obscure times and only about once a month - that's why I turned here first.  Any thoughts ort comments are welcome.

hopeful and opt...
Posts: 1278
Joined: Apr 2009

for your diagnosis.

We all are shocked and suffer all kinds of negative feelings when we are first diagnosed.

It is a good idea to attend the doctor meetings with your wife, or another person.

I suggest that you bring a tape recorder to the meetings and ask the doctors permission to record to you can review afterward.

I see that you read the thread from worried wife; your case appears to be very similar. PLease read this thread very carefullly, expecially Kongo's response.

http://csn.cancer.org/node/257782

Possible side effects from treatments are cummulative, so for example if you have Radial Prostetomy, you can suffer side effects of incontinence. This can be very very  considerable. Please note the number of response in this thread among men who are facing this issue

http://csn.cancer.org/node/188931

So for example if you have surgery, and since the cancer has escaped the prostate, you will require other treatments. Since the cancer has probably alredy escaped the prostate, surgery will simply be an extra treatmetn that will not be effctive.

I suggest that you have other diagnostid tests to include but not limited to , a bone scan, an MRI with a tesla 3.0 magnet, and possiblly a pet scan. The last two tests were described by me in the worried wife thread.

I str4ongly recommend that you seek a Medical Onocologist to be the lead doctor in your medical team, not the urologist that you are seeing. As I understand , you have an advanced disease which most likely has escaped the prostate, this doc is not recommending diagnostic test to determine how much and where the cancer is , and wants to operate.....You will stlll need hormone treatment and /or radiation.

Sloan Kettering is a world class hospital that treats prostate cancer.(By the way, US news and report each year ranks hospitals by specialty...you can google this)

Hackensack hospital is a regional hospital, also very good.

Frankly I would go to Sloan Kettering....you are only 50, you have a potential long life ahead of you.You want excellence, in fact I would go to timbuck tu for the best doctor...there is a difference between doctors and facilities for treatment............and Success.

I also suggest that you and your wife go to the support groups, even if it is in the middle of the night......you need to be educated in this fight.

I wish you excellent treatment and a great recovery.

 

 

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

Your really young.  unless things have changed since 2006, when you start chemo or xray, your ability to have the surgery go way down.  Get lots of direction on that topic from the pros.  Research on this site.  Many have been thru this.  At 58 I got the DaVinci, at my current age of 66 I might go the implants or radiation.  The options change with age. One thing I refuesd to do was watch and wait, for what it to go away?   NOT!!!!! especially at 50.

Sloan kettering is a good start.  I'm surprised insurance wouldn't pay for bone scan, it's a pretty normal diagnostic which pinpoints the spread in many cases.  Contact the insurance company yourself.  Most major carriers have a department dedicated to cancer staffed by an experience in cancer RN.  I know United Health Care did for me.

I also agree the use of an oncologist as lead and push for tests, they're lots better than taking action that's not in the proper order.

Please continue to post and keep us up to date.  Too many times guys stop posting and we want to help.

jj

 

 

 

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