Input on Declining PSA needed

fathersson
fathersson Member Posts: 121
edited March 2014 in Prostate Cancer #1
Hello All,

My surgeon has me scheduled for the robotic surgery in early May. He decided I should get another PSA test . Interestingly, my PSA at time of diagnosis ( Dec 09) was 5.02 (one core out of 12 being positive.. less than 5% volume and a gleason 6 ) now it is 4.120. I am taking Rapaflo. Any input on this change and ramifications.. Am i over-reacting by staying with the surgery?

Thx,

Frank

Comments

  • chorton581
    chorton581 Member Posts: 15
    There are many reasons your psa could drop or rise. The Rapaflo should be reducing the size of your prostate which MAY reduce your psa.
    Could even be a different lab reading your results.
  • lewvino
    lewvino Member Posts: 1,010 Member
    Hmmm, Tough call. I don't
    Hmmm, Tough call. I don't know what I would do if I was you. What is Rapaflo?
    Have you thought about watchful waiting? Keeping a close eye on it. I didn't have the choice since I had numerous cores positive with all of them grading at a gleason 7.

    Also how old are you?

    Larry (55) Davinci
  • fathersson
    fathersson Member Posts: 121
    lewvino said:

    Hmmm, Tough call. I don't
    Hmmm, Tough call. I don't know what I would do if I was you. What is Rapaflo?
    Have you thought about watchful waiting? Keeping a close eye on it. I didn't have the choice since I had numerous cores positive with all of them grading at a gleason 7.

    Also how old are you?

    Larry (55) Davinci

    Hi Larry
    I am 57. Rapaflo enhances urinary function. Does not shrink prostate. I have thought about watchful waiting.. This kinda confuses me more.

    Thx

    Frank
  • fathersson
    fathersson Member Posts: 121

    There are many reasons your psa could drop or rise. The Rapaflo should be reducing the size of your prostate which MAY reduce your psa.
    Could even be a different lab reading your results.

    Hi

    Thanks for the comments. The rpaflow does not reduce prostatesize and the lab is same one I used back in December. Who know.. does make you wonder that is for sure.

    Best,

    Frank
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    my 2 cents
    I believe that it would be a very good idea for you to get a mri with a spectroscopy, so you really can know where you stand.........stage the disease, see any detected nodule involvement , etc.

    The psa are indicators, and jump around somewhat......also there are factors such as sex exercise, infections etc that influence psa numbers.

    Pretty much , most of what I post about active surveillance and the rational for what I do is under my name.........simply click my name at this site, for the information that I listed .......please feel free to ask any questions that you wish.

    Ira
  • erisian
    erisian Member Posts: 107

    Hi Larry
    I am 57. Rapaflo enhances urinary function. Does not shrink prostate. I have thought about watchful waiting.. This kinda confuses me more.

    Thx

    Frank

    Overdiagnosed?
    That PSA drop would make me wonder, in light of the recent studies. My oncologist told me that the speed and direction of change of PSA are more important than the number itself. He has also mentioned on several occasions that a single test doesn't clearly establish a trend.

    If it were me, I'd wait a while, then get at least one more PSA before going under the knife. At this point, the drop could be a fluke. There is insufficient data to establish a trend in either direction. But if the PSA isn't rising, then the cancer is not growing. If it's not growing, then it's not going to kill you anytime soon.
  • lewvino
    lewvino Member Posts: 1,010 Member

    Hi Larry
    I am 57. Rapaflo enhances urinary function. Does not shrink prostate. I have thought about watchful waiting.. This kinda confuses me more.

    Thx

    Frank

    Well as you know PSA is only
    Well as you know PSA is only a marker that is used. They did find some cancer in the biopsy. Now the risk is how aggresive will that cancer be in growing. I'm no doctor but I would get further tests to see if they can determine anything more. Have you looked into Proton or even seed implants? I had surgery but it seems like you would be an excellent patient for some of the other options as well.

    Larry (age 55. 7 Months Post davinci)
  • jminnj
    jminnj Member Posts: 129 Member

    Hi Larry
    I am 57. Rapaflo enhances urinary function. Does not shrink prostate. I have thought about watchful waiting.. This kinda confuses me more.

    Thx

    Frank

    Watchful Waiting
    Frank,

    Wow, I would be confused as well. If I recall, the biopsy was one core at about 5%. I would bet that the surgeon is probably going to try to get you to still have the surgery in May, given the intial PSA, biopsy, and family history. Talk to him. Maybe the approach is to keep the surgery scheduled and have another PSA done in the latter part of April. See what the number is and then decide how to proceed. Watchful waiting might be an option. I can only speak from my own experience, which was 1 core positive (10%) and the full biopsy after surgery was 35% of the gland impacted.

    Joe
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    Surgery
    Frank:
    I know nothing of your situation other than what you reveal in this brief post. I must say though, that with one of 12 cores positive, G3+3, tiny volume, and psa of 4-5, and no palpable nodules (or you would have certainly said so) then your urologist certainly should have raised Active Surveillance as a course of action for you. If he does not consider you appropriate then is there ANYONE he would consider so?
    You at least need another opinion from either a recognized urologist or medical oncologist who can rate your appropriateness for declining surgery, at this time. Do not listen to anonymous sources, seek the best opinion possible. You will not regret it.
  • fathersson
    fathersson Member Posts: 121

    Surgery
    Frank:
    I know nothing of your situation other than what you reveal in this brief post. I must say though, that with one of 12 cores positive, G3+3, tiny volume, and psa of 4-5, and no palpable nodules (or you would have certainly said so) then your urologist certainly should have raised Active Surveillance as a course of action for you. If he does not consider you appropriate then is there ANYONE he would consider so?
    You at least need another opinion from either a recognized urologist or medical oncologist who can rate your appropriateness for declining surgery, at this time. Do not listen to anonymous sources, seek the best opinion possible. You will not regret it.

    Thanks Tar

    Good input.. I emailed my new doc and requested that he contact me regarding implication of this. Original decision to go with surgery was with my old doc.

    Best,

    Frank
  • fathersson
    fathersson Member Posts: 121
    jminnj said:

    Watchful Waiting
    Frank,

    Wow, I would be confused as well. If I recall, the biopsy was one core at about 5%. I would bet that the surgeon is probably going to try to get you to still have the surgery in May, given the intial PSA, biopsy, and family history. Talk to him. Maybe the approach is to keep the surgery scheduled and have another PSA done in the latter part of April. See what the number is and then decide how to proceed. Watchful waiting might be an option. I can only speak from my own experience, which was 1 core positive (10%) and the full biopsy after surgery was 35% of the gland impacted.

    Joe

    Joe
    How are you? I will review with new doc.. Like I said..all a little confusing as I dont want this thing to take off on me.. as I do not want to have major surgery if not needed. Let's see what new surgeon says..

    Best,

    Frank
  • fathersson
    fathersson Member Posts: 121
    jminnj said:

    Watchful Waiting
    Frank,

    Wow, I would be confused as well. If I recall, the biopsy was one core at about 5%. I would bet that the surgeon is probably going to try to get you to still have the surgery in May, given the intial PSA, biopsy, and family history. Talk to him. Maybe the approach is to keep the surgery scheduled and have another PSA done in the latter part of April. See what the number is and then decide how to proceed. Watchful waiting might be an option. I can only speak from my own experience, which was 1 core positive (10%) and the full biopsy after surgery was 35% of the gland impacted.

    Joe

    Joe
    How are you? I will review with new doc.. Like I said..all a little confusing as I dont want this thing to take off on me.. as I do not want to have major surgery if not needed. Let's see what new surgeon says..

    Best,

    Frank
  • BELESSA
    BELESSA Member Posts: 6

    Thanks Tar

    Good input.. I emailed my new doc and requested that he contact me regarding implication of this. Original decision to go with surgery was with my old doc.

    Best,

    Frank

    Sir,
    After my biopsy the

    Sir,
    After my biopsy the result showed exactly like yours; one of 12 cores positive, G3+3, tiny volume, and psa of 4-5, and no palpable nodules. I monitored my PSA for a few months and it continue to drop. Because I wanted the cancer out, I did surgery. The post surgery pathology report indicated large voluem (20%) cancer on two sides. In one side, the cancer was found to be very close to the apex. I believe I did the right thing going for surgery. Plese consider either to have a satuarated biopsy of may be 24-40 cores or think very carefully before you decide one way or the other. I hope this helps you sir and good luck
  • jminnj
    jminnj Member Posts: 129 Member

    Joe
    How are you? I will review with new doc.. Like I said..all a little confusing as I dont want this thing to take off on me.. as I do not want to have major surgery if not needed. Let's see what new surgeon says..

    Best,

    Frank

    Doing Well
    Frank,

    I am doing pretty good these days. Back to work full time, bowling again, down to one pad a day, even bowling has become less of an issue. I understand what you are saying about the confusion and not wanting it to take off. Not sure what the saturated biopsy entails but that sounds like an option, it may give you a better idea of what is truly going on. Is the new surgeon local? Have you gone to Sloan in Basking Ridge? Dr. Parra down there is very good. He may be able to help with regard to the declining PSA. Keep me posted.

    Take Care,
    Joe
  • fathersson
    fathersson Member Posts: 121
    BELESSA said:

    Sir,
    After my biopsy the

    Sir,
    After my biopsy the result showed exactly like yours; one of 12 cores positive, G3+3, tiny volume, and psa of 4-5, and no palpable nodules. I monitored my PSA for a few months and it continue to drop. Because I wanted the cancer out, I did surgery. The post surgery pathology report indicated large voluem (20%) cancer on two sides. In one side, the cancer was found to be very close to the apex. I believe I did the right thing going for surgery. Plese consider either to have a satuarated biopsy of may be 24-40 cores or think very carefully before you decide one way or the other. I hope this helps you sir and good luck

    Interesting
    Heard back from my doc who wants to continue with plan for robotic in May. Also a relative who is director in pharmaceutical oncology research at large company with much emphasis on prostate.. She also advised me to stay with original plan. Not over-joyed as I guess I was looking for a way out of surgery. Oh well.
  • erisian
    erisian Member Posts: 107

    Interesting
    Heard back from my doc who wants to continue with plan for robotic in May. Also a relative who is director in pharmaceutical oncology research at large company with much emphasis on prostate.. She also advised me to stay with original plan. Not over-joyed as I guess I was looking for a way out of surgery. Oh well.

    No Data
    But none of those people have any more information about your PSA, so what are they basing their recommendations on?

    One thing for sure is that if you wait another month or 6 before you have surgery, you won't be at any increased risk for problems with it, or down the road. So there is no indication of any need to rush you in to surgery. Why do the doctors etc think that speed is so important?

    Current indications are that your disease is regressing. That's good, and it would be even better if it continued to do so. This is not the time to rush into an irreversible decision.

    I would want to get at least three PSA tests between now and the surgery date, two or three weeks apart, and no sex for four days prior to each test. That would be enough data to have a shot at seeing any trend, and calculating the PSA doubling time, if it is rising. With that information in place, you and your doctors would then be in a position to make an informed decision.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member

    Interesting
    Heard back from my doc who wants to continue with plan for robotic in May. Also a relative who is director in pharmaceutical oncology research at large company with much emphasis on prostate.. She also advised me to stay with original plan. Not over-joyed as I guess I was looking for a way out of surgery. Oh well.

    Fathersson
    You are having a very hard time making a decision...remember you do not have to jump into anything right away.........your number is very , very , very low.

    For example,I went to see a surgeon about robotic surgery last year when I turned 66......my numbers are higher than yours....3=3=6. 2 of12 cores with less than 5 percent involvement in each...........The surgeon did not discuss surgery with me at all, just saying that he is a world class surgeon, and told me to do active surveillance, and basically kicked me out of his office.........He did want me to get a MRI and Spectroscopy to evaluate where I stood....this was a year ago.

    Heres some information from a pamphet from the national cancer institute for treatment choices for men with early stage prostate cancer
    Watchful waiting--some listed factors
    If you have a smaller or slow-rowing type of prostate cancer confined to the prostate, and it is considered low risk.
    If you afe in your 70's or older, or have serious medical problems
    If you are able to live with the fact that you have cancer in your body
    If you can be vigilant about going to your chck-ups

    Surgery
    If you are younger than 70 and in good health
    If you want the cancer cells removed
    If you are able to accept that serious side effects often hapen with surgery

    ira
  • bdhilton
    bdhilton Member Posts: 866 Member
    Listen to yourself
    At the end of the day...what do you feel is the best option for you? This needs to be your decision based on facts and best treatments for you…as one of the posters says here we are all “Snowflakes”…My decision came after I researched to the point of being obsessive then mediated and reflected on each treatment understanding my special circumstances and the specific fit with each treatment...at that end of this journey I was still debating robotics vs open…my end decision was when a urologist recommended me outside of his practice to Dr Catalona to perform open surgery when he had in-house expertise to do open and robotics (and making the $$)… At that point in time I knew that I was blessed and my urologist was recommending what he honesty felt was the best decision for me based on my special circumstances… It will come to you…
    Best to all
  • fathersson
    fathersson Member Posts: 121
    bdhilton said:

    Listen to yourself
    At the end of the day...what do you feel is the best option for you? This needs to be your decision based on facts and best treatments for you…as one of the posters says here we are all “Snowflakes”…My decision came after I researched to the point of being obsessive then mediated and reflected on each treatment understanding my special circumstances and the specific fit with each treatment...at that end of this journey I was still debating robotics vs open…my end decision was when a urologist recommended me outside of his practice to Dr Catalona to perform open surgery when he had in-house expertise to do open and robotics (and making the $$)… At that point in time I knew that I was blessed and my urologist was recommending what he honesty felt was the best decision for me based on my special circumstances… It will come to you…
    Best to all

    Family input
    Interesting how sometimes we forget things that may have an impact on decisions. My sis reminded me that I also was diagnosed with a very low grade bladder cancer ( very small tumor removed via resectioning in Feb) and that my Dad passed away from this horrific disease ..and ...that based on those factors.. I may want to get the surgery done..