How should I choose which treatment ?

[enyl]

    I am in my mid-50s and have just been diagnosed with prostate cancer. Needless to say, the news came as shocker especially since my previous doctor has been an advocate of not testing for PSA so now I have no way to tell how long I've had this cancer. I live in Hong Kong. My 2 recent PSA's have been 6.3 in Nov 09 and 5.9 in Feb 10. The biopsies (8 samples total 4 from right and left sides) done in March 2010 found 3 tumors on the right and none on the left side (which does not mean my left prostate is cancer free). My Gleason count is 3 + 3, my tumor stage is T1c and the doctor who examined me say my prostate size is smaller than 24cc and there is a less than 1% chance that the cancer would have spread at this stage. We do not plan on having any more children.
    I understand the available alternatives are 1. radical prostatectomy,  2a= external beam radiation, 2b= brachytherapy which is seldom performed here although I may consider having it done in the States, and 3. Active surveillance.
    In choosing between alternatives 1 and 2a, my concerns are firstly what is the difference in impotence, including erectile dysfunction and secondly, incontinence. I understand both treatment alternatives will result in impotence and incontinence, so I am just trying to get information on the resulting differences, if any, between the 2 treatments. Are there any other factors I should consider in choosing between these 2 alternatives ?
    At my age, I value "Quality of life", so how great is the risk if I should opt for active surveillance ?
    Lastly, I am having great difficulties finding patients who have had prostate cancer in my home country about my age to chat with so that I have more info to decide on the treatment best suited to me. Prostate cancer is less prevalent here and the doctors tell me that it is very rare for someone my age to have it here. Could someone please direct me to a suitable online community or forum  so I can access and share more info. Thanks so much.

[kcd86]

To Enyl
KLauren gave you great in sight into this disease. The only thing I would reccomend is going to a facility like NYU Cornell Medical Center in Manhattan, NY or Dr Samadi at Mount Sinai in NYC  as an example where they do thousands of these procedures. The best outcome for cancer patients are under the hands of surgeons who have vast experience in dealing with these types of cancer
Good Luck
Kevin

[enyl]

Hello Klauren,
   Thanks for your prompt response, your understanding of my situation has helped a lot (as it happens I'm 54 also). So far I have seen 2 surgeons (1 of whom is the top prostatectomy surgeon here) and 1 oncologist and both surgeons'  responses worried my wife and I a lot, because both said they are unlikely to do ANY nerve sparring on the right side (my biopsies show 3 tumors on the right out of 4 biopsies) as they want to "play it safe" and consequently both said they will sever all nerves on the right side of my prostate and therefore I can expect REDUCED erectile function of 50% to 70% in the long-run after surgery !!! Both surgeons here will use the Da Vinci robotic system for the surgery which is commonly used in the States too but the key difference I think is in the statistics, top surgeons in the States commonly have over 1000 cases under their belt whereas the top surgeon here has just 200 and the other surgeon just 30 cases, these are vast differences in terms of experience. May I be frank and ask what is the prognosis on erectile function from your surgeon now that he has done the operation, ie: in the long term when your husband has made a full recovery ?  Could you ask your surgeon if he would talk to me on the phone if I email him my biopsy results+ the info I have given above as I would consider coming to NY for the treatment but among other considerations I would need an estimate of the cost ? Moreover, re incontinence, I have been told a urine bag for 1 week to 10 days immediately after surgery, then diappers for 6 wks to 6 months depending on the patient and then pads + Viagara etc for the rest of my life + diappers at night unless I can withhold from drinking 2 hours before sleeping.  What a bleak future for a 54 yrs old won't you agree or maybe the surgeons are just being (too) honest ???
    Meanwhile, because of what the surgeons here had said, we have been pushed towards external beam radiation treatment which is NOT my preferrred alternative. May I ask therefore why you and your hubby chose surgery over this alternative as I'm sure you must have carefully weighed the pros and cons ? (We have either Intensity moderated radiation ("IMRT") or image guided radiation here which again I understand is also the latest available form of radiation treatment in the States ).
    In your email, you mentioned proton treatment, isn't that the same as brachytherapy and is this also available at NYU ?
    Finally, in the process of reaching your decision for surgery, did you come across any online communities or forums to talk to people of a similar age who had the same treatment and if so, could you point me to these sites so I can talk to more people before deciding on the right treatment. My problem is first the incidence of prostate cancer is a lot lower among Chinese population vs Caucatians and secondly, they have NOT been able to find anyone under 60 here who had prostatectomy which as the nurse pointed out does not mean no one under 60 here has had prostate cancer, it just means no one is available or willing to share his expereience partly due to the much much smaller population of prostate cancer here.
    I apologise for the numerous questions and I hope you can help me or at least refer me to your surgeon. I refuse to accept what the surgeons here have told me ie: no nerve sparring at all on the right side as my cancer stage is only T1c with a Gleason count of 3 +3 and a PSA of around only 6. By the way, have you had the repeated PSA result ?

[klauren]

Hi Enyl,
I'm sorry to hear about your situation.  My husband is 54.  he was diagnosed with prostate cancer in November of 2009.  His first PSA ever was 50.0 just prior to surgery.  He had a radical prostatectomy performed in January of 2010.  He had this done at NYU Cornell Medical Center in Manhattan, NY by one of the top surgeons in prostatectomy surrgery in the world.  He recovered very well.  No incontinence at all.  Erectile function is just beginning to return, but very slowly.  He had a partial nerve sparing prostatectomy since he had alot of cancer on both sides.  Surgical biopsy revealed that it had penetrated the capsule and invaded the seminal vesicles with positive margins.  His Gleason was 4+4.  Staging is T3b.  His first post op PSA which was done 2.5 months after surgery came back 0.34.  Surgeon was not happy with that.  Below 0.2 is considered immeasurable.  His was measurable.  He suggested he repeat PSA 6 weeks from that PSA test.  He just had it done this week and we will have the results tomorrow.  We were told that if it is the same or slowly rising, he will be a candidate for pelvic radiation.  If it rises or doubles quickly, he will not be able to have the radiation and he will then have to have chemo/hormone therapy combination adjuvant therapy, which is the greater of two evils.  
In your case, according to all of the research i have done and the knowledge we have acquired since this whole process began, i would not do "active survellance".  I would either opt for the surgery or begin treatment.  It sounds like your cancer is contained.  I might even look in to Proton treatments.  The only place i know if is Loma Linda Medical Center here in the states.  I know there are a few facilities who offer it, however.  If you just take a "wait and see" approach, you may be dealing with something more difficult to treat, down the road.  Just my opinion.  I hope this helps.  Have you consulted with a surgeon or an oncologist yet?  
Best of luck to you.  Stay in touch and let me know if there is anything else i can do to help you with your decision.  It's not an easy one.