Recurring Prostate Cancer after RP years ago

jjerome
jjerome Member Posts: 1
in Prostate Cancer #1
My husband had an RP in 1999. Gleason 8 found on biopsy. Cancer in one interior lobe, did not spread. Said on report that he had perineural invasion. Did not ask at that time, surgeon did not spare nerves as he said cancer "climbs" and majority of RP he has performed, cancer eventually returned. Five years later, his annual PSA was 2.57. I was shocked and unprepared. All doctors said "nothing to worry about for it had been 5 years." Well that was when I educated myself since it showed that majority of doctors knew very little about PC. The information I received was ridiculous.
It has now been three years and since that time, we do and "on" and "off" treatment, but the latest treatment has lasted for over a year after only ONE HORMONAL INJECTION, 50 mg casodex and Avodart to bring down the DHT (dihydrotestosterone) since his DHT was 30 and it is known that it is a much more powerful testosterone than regular T. Avodart immediately brought it down to 3! T is eventually increasing back to a normal range and the PSA has increased after 9 months of no meds to .013. Our urologist, specializing in PC, wants to begin HT if it reaches 0.2 and I am saying it is much too early. I would wait until at least 1, for the longer we are "off" the better off we are! Every doctor has a different angle or answer. So frustrating. Taking turmeric (curcumin) daily, POM, Calcium for bones, Vit. D, Reservatrol in hope of prolonging not going back on hormonal. We are know thinking, per another doctor's advice just to take 50 mg Casodex a few times a week and NOT take hormonal therapy injection, still staying on Avodart, to see if that would bring PSA back down to 0.01 which he has been since August 2010. Another thing, many doctors do not do the ultra sensitive PSA, Labcore and Quest have them, regular PSA only go as low as 0.1, whereas Post prostatectomy PSA's go to 0.01. Any many having an RC should not have his PSA higher than 0.10 for if higher shows cancer is recurring. He also had 33 radiation treatments in 2008,but did not seem to lower PSA at all! A doctor verbally time stamped him with a life line of 6 years, which I never forgot, for know I know he as full of baloney. Where is the cancer - in the prostate bed, did it metastisize, MRI in 2008 of chest and lymph nodes, showed nothing. Is it too small? Getting educated is your best way and also never listen to even one two or three doctors, unless you get all the information yourself. Some men wait if recurring PC PSA is 2, I do not know whether that is too high or not to re-begin hormonal therapy and/or casodex/avodart. The recent discussion on Avodart/Proscar bothered me until I began to understand the ambiguity of it all in reference to men WITH or recurring PC. Over 10 years ago doctors were not even REQUIRING PSA's. I always requested one. You would think since this is a men's disease they would have jumped on their own illness bandwagon decades ago.

Comments

  • Trew
    Trew Member Posts: 932 Member
    #2
    I understand the reluctance
    I understand the reluctance to go back on HT. I was on Eligard for 1 yr. I changed uros and quite the treatment. The uro wanted me on HT for 2 yrs.

    I guess I am basicly a pessimist and expect my PSA to eventually start rising again. I have had the same debate with myself what I will do IF and when my PSA begins to rise again as yu have posted here. Its not an easy choice. I suppose in the end I will decide on what my wife's concerns are- she would be the one left alone if......
  • Old-timer
    Old-timer Member Posts: 196
    #3
    It looks as though your husband and I have followed some similar pathways insofar as prostate cancer is concerned. Thus, an outline of my story may interest you. Twenty years ago, with a PSA of 4.0 and a biopsy showing Gleason score of 7 (3+4) I underwent RP. PSA dropped to zero and remained there for 13 years. It then began a slow climb 0.1, 0.12, 0.39, 0.64. My urologist said he would recommend radiation when it reached 1.00. After about a year, it reached 1.11. At that time, I began 35 sessions of direct beam radiation to the pelvic area. The onconlist gave a 66 percent prediction that the radiation would be successful. It wasn't. My urologist then said we would begin hormone therapy when the PSA reached 5.0. Before it reached that level, my wife and I moved to a different city. Because of the move, I changed urologists. My new uro (bless him) said he would wait until the PSA reached 10.0 to begin HT. I welcomed the additional time. As it turned out, my PSA actually dropped a couple of times on its climb from 5.0 to 10.0. That was encouraging, and I talked my uro into waiting until the PSA reached 20.0. The doc said there was not more than a five percent chance the cancer would flare up at 20.0 I went on HT three years ago with a PSA reading of 20.4. The PSA immediately dropped to less than 0.01 (undetectable)and remains at that level today. Doc says my cancer is in remission. It feels great and I am a happy camper. Life is not perfect though, as I continue to cope with an incontinence situation.

    Hope this is helpful. Good luck to both of you.

Discussion Boards