Yet another thread about PSA recurrence after RP

wgr
wgr Member Posts: 2
in Prostate Cancer #1
Hello all. New to forum - first post.

I have had prostate cancer screening since age 40 due to a FH of prostate cancer in my father. PSA's always normal. In July 2009 during a routine PE, my PCP palpated a nodule. PSA was 2.14. Previous PSA 18 months earlier was 1.4. Was referred to a local urologist where prostate bx's returned adenoCA with Gleason 4+3. Slides sent to Dr. Epstein at JHU and revised Gleason 4+4. Bone scan and CT scan negative. Had consults with Dr. Walsh and Catalona, and also with the Proton Beam center in Indiana. Due to a large prostate (100 cc), was felt not a candidate for brachy.

Underwent RRP at JHU on 11/4/2009. No complications except for blood loss, no transfusion. Pathology Gleason 4+4. Focal ECE. Margins negative. Nodes and SV negative. No incontinence. Sexual function 50%.

All follow-up PSA's undetectable for 2 yrs and 8 months. Recent PSA in July detectable at 0.113. Local urologist said to repeat in 3 months. I repeated 2 weeks later and still elevated at 0.129.

Went to JHU to see my prostate surgeon. He felt that I probably had a local recurrence and was recommending salvage RT, preceded by a course of HT. But first he wanted to repeat my PSA at the JHU lab. On August 8 at JHU my PSA was undetectable, with a level of 0.07. Recommendation was for close observation with a repeat in 3 months, but additionally with an immediate repeat PSA performed at the other local lab in my area used by my PCP. PSA at this lab on August 13 was detectable at 0.118. I am scheduled for a phone consult with my prostate surgeon at JHU tomorrow.

Not sure what to make of all of this but fear that I might have a recurrence. According to the Trock study, salvage RT can be quite effective if tratment is begun within 2 yrs of PSA recurrence and when PSA is still low <0.5, even in patients with high Gleason scores and fast doubling times.

Have been researching for the best Rad Onc centers in the country, but not sure where to get that information. I am sure that JHU has a reputable program, but also considering UCLA as I have family there with whom I can stay. I have a consult this week with the chairman of the program at MCV in Richmond, who is supposed to be quite skilled in treating prostate cancer, Dr. Anscher.

I had a phone consult last night with Dr. Datolli, but my prostate surgeon at Hopkins does not think very highly of him, nor Snuffy Myers.

I have been quite stressed over these recent events, which is sinking me into depression. Any useful advice would be appreciated, especially in regards to the treatment centers and physicians noted above.

Thanks.

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    #2
    Weird
    Wgr,

    Welcome to the forum and sorry that you find yourself here. You seem like you are doing all the right things, are well informed, and have met with and consulted some of the leading experts in the country. The weird thing is the variance in PSA levels between your local lab and that at JHU. Besides the obvious difference in what may be internal procedures between one lab and another I am not sure what to make of that and am as confused as you are. You would think that PSA tests are pretty standardized across the country, given that some are more sensitive than others. I always pretty much assumed that a PSA test is a PSA test is a PSA test.

    Maybe others have heard of variations in PSA readings from lab to lab and if this is not an uncommon occuence you have to wonder how many men have been sucked into unnecessary treatment based on PSA scores caused only by lab variance. Many men with a PSA reading often get a second reading but maybe they ought to be going to another lab. Makes you wonder.

    In any event in your case you are smart to consult with several experts on a course of action. I found it interesting that your urologist doesn't think much of either Datolli or Myers. I have never dealt with either of them personally but I have read about Datolli and visited his site often and my impression is that he is a bit of a commercial. Many on this and other prostate cancer forums are enamored with Snuffy Myers. I'm not particularly over the moon about him but I can't put my finger on exactly why. Just a gut feel and who knows what that is worth? I've watched several of his videos. I think a lot of men like him because he is also a prostate cancer survivor. In any event I think it's smart that you are seeking a very broad range of input to help you make a decision.

    I can certainly appreciate why this conflicting data could cause depression and confusion. That's a perfectly normal reaction and your GP may be able to help you with some medications that can help you through this period.

    I believe you are taking all the right steps. You understand what may be happening, you're taking positive actions to address the situation, and you know what you're doing. In other words, you are in control and moving to manage your own destiny which is more than most men in similar situations do. I agree that early application of salvage radiation is very promising in terms of long term results. You may also want to include an oncologist in your consultations to get an opinion in doing radiation in conjunction with HT. Of course, first you have to figure out what is going on with the weird PSA scores.

    While UCLA is obviously a great center there are others in different parts of the country that have high ratings, including in the Richmond area and Northern Virginia. I think there is some value in being co-located (or nearly so) with the people that treat you so that you can visit them easily in follow-up treatment.

    Best of luck as you go forward and please keep us informed.

    K
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #3
    wgr
    Not much to ad to Kongo's response.

    I respect your efforts to find the "best", most would not.

    By the way, I attended a lecture by Dr. Myers, interesting he had a very low opinion of surgery , contrary to Dr. Walsh's. I don't think that they are friends.

    To finding a top place for radiation. I suggest that you go to the pubmed site, and see which doctors publish the most. This will be an pretty good indicator of excellence.

    As far as the PSA test, apparently you are going to a labs that goes to the thousands. Boy this is very precise.....some doctors do not like to use labs that are that precise, in order to cut down on worry.......just a thought, just mentioning ........since this is far from my expertise.
  • mrspjd
    mrspjd Member Posts: 694 Member
    #4
    UCLA
    wgr,

    Welcome to the PCa forum. Sorry to read of your situation and your possible need for SRT. You seem to be on top of things, knowledgeable and proactive in your research--all good and very important. My husband and I are very familiar with UCLAs Dept of RO and many of the PCa MDs at UCLA. If you should you have any questions, please feel free to email me via CSN.

    Best of luck.

    mrs pjd
    wife of a PCa survivor, T3 stage
  • Samsungtech1
    Samsungtech1 Member Posts: 351
    #5
    Tests
    I have read and was told to only get PSA tests at one source. You never know what the difference might be, but that might be all it takes. You do not say exacrly how these tests divide. Your tests indicate no spread. My question would be what exactly are they going to radiate? Are they saying prostate bed? I would guess they are talking radiating the whole area. That is not bad while you go through it, but down the road rectum bleeding is pretty much a fact. Of course you can have surgery to fix this, but it seems like one thing leads to another.
    I can see the depression, after being free for over two years. Unfortunately it is like escaping a maniac and stepping in front of a bus. Which would be better? You are where you are now and the biggest issue is to get ready for a fight, if it is necessary. I would address anxiety first and cancer second as it seems that your level is up, but where is it? I would not run towards radiation on hope, I would want facts, no guessing, no assumptions, facts work.
    Started to go to UVA for my cancer, but stayed down here in NN at Riverside, with DR. Tillinghast. I am trusting him with my life. I have metastic pca.
    Great Dr. Been through what they call radiosurgery here with DR Kersch, from UVA. He went through training in Sweden with the developer of this procedure. Only person that can train anyone in this country. You do not need this treatment. Just letting you know that pros are everywhere
  • gkoper
    gkoper Member Posts: 173
    #6
    WGR
    Welcome to the brotherhood. Just as vets seek out their "battle brothers" in times of strife...we are here for you in the PCa battle. You have already got good advise from others but let me give you the Reader's digest version of my story... that is similar to yours. At age 65 I was smacked with the big C news in March, 2009. My PSA was rapidly rising & the biopsy said 4 of 12 & a gleason 7. My urologist said take it out & my oncologist said radiate. Since I was told the cancer was all in the prostate I opted for surgery in late May. The operation went well...but the 1 month PSA was .3. Then it doubled over the next few months. Very concerned, I started 37 IMRT radiation treatments in late Oct. I finished just before Christmas in 2009. I am now getting zero's & loving life every minute. I went with Robert Boissoneault oncology radiation in central Florida. They are outstanding. You can do this...get many opinions... do your homework...make YOUR decision & and you will be fine.
  • laserlight
    laserlight Member Posts: 165
    #7
    gkoper said:

    WGR
    Welcome to the brotherhood. Just as vets seek out their "battle brothers" in times of strife...we are here for you in the PCa battle. You have already got good advise from others but let me give you the Reader's digest version of my story... that is similar to yours. At age 65 I was smacked with the big C news in March, 2009. My PSA was rapidly rising & the biopsy said 4 of 12 & a gleason 7. My urologist said take it out & my oncologist said radiate. Since I was told the cancer was all in the prostate I opted for surgery in late May. The operation went well...but the 1 month PSA was .3. Then it doubled over the next few months. Very concerned, I started 37 IMRT radiation treatments in late Oct. I finished just before Christmas in 2009. I am now getting zero's & loving life every minute. I went with Robert Boissoneault oncology radiation in central Florida. They are outstanding. You can do this...get many opinions... do your homework...make YOUR decision & and you will be fine.

    PSA
    WGR,

    Sorry to hear about this. PSA scores can be misleading. I had about the same problem, in feb of 2011 my psa was only 2.25 and I was in stage T2c pc. Surgery in feb of 2011, psa levels started out at .01, then .02 and now .03. The doctor is watching this, but it is still considered to be undetectable. My question is why is this moving around??? Do your research on treatment methods. Surgery was rough on myself, if there was another method I would look into it. If you have time get another opinion it would be good. Now is this the FREE PSA or TOTAL test or a normal test. The free PSA test is a more accurate indicator of cancer, you can look this up on line. Welcome to the group
  • hunter49
    hunter49 Member Posts: 247 Member
    #8
    Welcome to the club. Sorry
    Welcome to the club. Sorry your membership was given to you but you will find a lot of good people and a lot of information here. I just was in the hospital for a lymphocele that became infected from my surgery in November last year. It turned into a staff infection and really knocked me on my butt. However, I had 4 blood tests last week from 4 different labs and here are the PSA results from each .04, .025,.01 and less than .01. 2 were on the same day. Go figure. I asked my doctor on this and he said as long as not .1 need not worry. He is at Hopkins and said you see PSA small jumps even after an RP and each lab is different.
  • wgr
    wgr Member Posts: 2
    #9
    hunter49 said:

    Welcome to the club. Sorry
    Welcome to the club. Sorry your membership was given to you but you will find a lot of good people and a lot of information here. I just was in the hospital for a lymphocele that became infected from my surgery in November last year. It turned into a staff infection and really knocked me on my butt. However, I had 4 blood tests last week from 4 different labs and here are the PSA results from each .04, .025,.01 and less than .01. 2 were on the same day. Go figure. I asked my doctor on this and he said as long as not .1 need not worry. He is at Hopkins and said you see PSA small jumps even after an RP and each lab is different.

    Update.
    Well, I spoke with JHU this afternoon regarding all of my recent PSA's. Recommendation was to repeat PSA in 3 months and we'll observe the trend, but there was adamant opposition to SRT at this time.

    I suppose waiting a 3 month period of time will not jeopardize my health, and I will use this time to research the best Rad Onc centers that I can find. If any of you have any recommendations, please let me know.

    Thanks.
  • mrspjd
    mrspjd Member Posts: 694 Member
    #10
    wgr said:

    Update.
    Well, I spoke with JHU this afternoon regarding all of my recent PSA's. Recommendation was to repeat PSA in 3 months and we'll observe the trend, but there was adamant opposition to SRT at this time.

    I suppose waiting a 3 month period of time will not jeopardize my health, and I will use this time to research the best Rad Onc centers that I can find. If any of you have any recommendations, please let me know.

    Thanks.

    You have email
    wgr,

    I've replied to your CSN email and sent the info you requested. Hope its helpful and that everything works out for the best. Good luck.

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