HealingWell
Search Close Search
☰

Question about further treatment

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/17/2017 9:49 AM (GMT 0)
I recently posted my husband's 6 week post surgery PSA of <0.01 and Wings of Eagles asked me what treatment he was getting.

This brought concerns I've been struggling with right to the top of my mind so I'm want to ask you guys flat out should we see an RO for a consultation?

Due to his margin I was thinking maybe we should but the doctor said we just need to watch his PSA closely. That was his surgeon/urologist. I asked his PA after surgery if my husband's proximal basilar margin meant a bladder neck margin and it was VERY difficult to get a straight answer. He never really said yes or no he ended by saying "there is no mention of the bladder or bladder neck in his pathology.

I so my question is should we see an RO now like I think maybe is was Wings was referring to? Does he need a cystoscopy to see if it got into his bladder?
Posted 4/17/2017 1:25 PM (GMT 0)
Getting another opinion is certainly a good idea as far as I'm concerned, at the very least it might put your mind at ease. You really don't want to go the hormone and radiation route unless absolutely necessary. Before that part of my journey I was starting to see some lessening of ED which gave me some hope of getting somewhat back into business. Now I'm afraid complete ED will be my status quo forever.
Posted 4/17/2017 1:46 PM (GMT 0)
I agree with John. Put your mind at ease. Hang in there and fight. It's better to be pro-active.
Posted 4/17/2017 1:59 PM (GMT 0)
<.01 at six weeks?

That's a invitation for a mega party and the biggest celebration you can think of.

You could see an RO, but likely the answer will be, "Wait and watch the PSA." Even UROs are sometimes right about PC.

Chill, enjoy life, wait for the next PSA.
Andrew
Posted 4/17/2017 2:44 PM (GMT 0)
Count me in with those that advise waiting for the next PSA test. I probably can guess at the identity of your PA, as I speak to him as well. His answer is most likely the best you'll get right now. I would advise doing some research on your own in concern to the troubling aspects of your husband's pathology. Looking for some statistical data on that type of margin relating to recurrence might be helpful to you.

I don't know how others here feel, but I wonder if reviewing the pathology with another pathologist experienced with prostate cancer might give better feedback at this time? Of course, surgeons with a lot of experience have probably seen similar pathology many times and can predict likely future outcomes.

I still think it is too early to start worrying. Hang in there.
Posted 4/17/2017 2:56 PM (GMT 0)
No.

I saw Wings' comment in the other thread...I think he was confused, or off-base.

Monitor your ultrasensitive PSA, as per plan. Gleason at the margin (common location for iatrogenic margin because difficult to see) was pattern 3. [added edit: PSM in the absence of EPE, usually represent a capsular incision into tumor, an iatrogenic positive margin, due to an improper dissection plane with incision into the prostate and into the tumor. LINK]



Regarding your question about the bladder neck, this terminology was indeed a topic of conversation at the International Society of Urological Pathology (ISUP) Consensus Conference on Handling and Staging of Radical Prostatectomy Specimens, where leading pathologists discuss the need for consistency in reporting, although they don't always achieve that consistency. Read the whole thing if you'd like, but I'll just copy/paste the portion of direct interest from this link:
www.nature.com/modpathol/journal/v24/n1/full/modpathol2010155a.html
    Terminology of proximal and distal margins of radical prostatectomy specimens

    The terminology of proximal and distal margins in radical prostatectomy specimens is not uniform. The disadvantage of using the terms proximal and distal ‘urethral’ margins is that pathologists may inadvertently regard the urethra as the true margin, while in fact it is the prostatic tissue peripheral to the urethral orifice that is of clinical relevance. This may potentially lead to deliberate incision and sampling around the retracted urethral orifice, thus increasing the likelihood of reporting false-positive surgical margins at the prostatic apex and base. Furthermore, when pathologists use the terms ‘positive proximal urethral’ or ‘positive distal urethral’ margin, urologists may assume the pathologist to be in error as they normally transect the urethra some distance from the prostate and this then retracts back into the prostate.

    Survey and Consensus Conference Results-
    In the survey, 62% of pathologists referred to the proximal margin of the prostate as the ‘bladder neck margin’, while 36% preferred the term ‘basal margin’, 12% the ‘proximal margin’ and 9% the ‘proximal urethral margin’. For the distal margin, 85% designated this the ‘apical margin’, with 12% referring to it as the ‘distal margin’ and 3% as the ‘distal urethral margin’.

    The online survey responses indicated that there is mixed practice with respect to the terminology used to describe distal and proximal margins, and for consistency, it is clear that this should be reconciled.

    At the conference, there was consensus achieved, with 71% of participants having a preference for the terms bladder neck and prostatic apical margins. Of some interest, there appeared to be a geographic variation in the responses, with bladder neck and prostatic apical margin being favored by 68% of North American pathologists and 45% of non-North American pathologists; while 55% of the latter preferred a variety of alternate designations.

Post Edited (JackH) : 4/17/2017 9:20:24 AM (GMT-6)

Posted 4/17/2017 3:56 PM (GMT 0)
What does your husband think?? Give him some breathing space...sorry aunt Agatha...er...no I'm not...now is the time to rest in peace...not the by and by...

I know...I know...ain't ez...nothing wothwhile is...
Posted 4/17/2017 8:46 PM (GMT 0)
Hi Diane

I post for my husband too and looks like we are both on the same timeline and in a similar position. I don't have any wise words due to our inexperience but appreciate your question and all the replies. Keep me posted on what you decide, i too was wondering about getting RO opinion.

Wishing your husband the very best

Sheila
Posted 4/17/2017 11:07 PM (GMT 0)
You have no indications that anything is wrong. Why are you doing this to yourself? I know that once one gets on the "alert - cancer!" mode of being, it's difficult to stop and switch modes, but for both of your sakes, you might want to try.
Posted 4/18/2017 12:28 AM (GMT 0)
And that is important to you-- why?
Posted 4/18/2017 1:13 AM (GMT 0)
It's absolutely safe to wait. And the next PSA test is the only test he needs at this point.

You've already had a most effective treatment for a person with his numbers.

Practice evidence based treatment. What you're doing is speculating without positive evidence of failed surgery or recurrence. The PSA will prove/disprove that point.

A big part of this game is waiting and patience.
Posted 4/18/2017 2:05 AM (GMT 0)
This has nothing to do with pca i rarely put some one on ignore. But this is silly...she knows she knows nothing...but thinks she does...kudos to Allan...but it ain't gonna happen...
Posted 4/18/2017 2:23 AM (GMT 0)
I can't begin to imagine the anxiety that is driving you to make up these fantasies, nor how some random comment you read set you off. I mention this to hold a mirror to what you are doing and the need to subsist from it. There are enough real things to deal with in life without making them up. I know I sound like a broken record, but I highly recommend psychotherapy and Mindfulness because I know how much it helped me. When I read that you are trying to talk his doctors into a cystoscopy for no apparent reason, it makes me scared for you. Do you understand the harm that could do?

I hope you follow Andrew's sage advice.
Posted 4/18/2017 2:59 AM (GMT 0)

Bololidat said...
This has nothing to do with pca i rarely put some one on ignore. But this is silly...she knows she knows nothing...but thinks she does...kudos to Allan...but it ain't gonna happen...

Wow that actually made me cry. Guess I'm just feeling weak right now.
Posted 4/18/2017 6:51 AM (GMT 0)
Diane, you are far from weak. Don't let Bolo's post make you upset. He's just being himself and you are just being you.
I began replying with a lot of past experiences with a post longer than necessary and somehow lost it. Just as well. The important point I wanted to make is that none of what's happening or might happen is your responsibility or fault. I was just reflecting on how many guys lately have beaten PCa only to be diagnosed with another cancer and are now doing war with that one or lost the battle to that one.
I also spend a fair amount of time researching and bookmarking and asking Allen for suggestions. I know the docs are overbooked and overworked and we need to be our advocates.
But I try to make sure I spend much more time enjoying time with Gary or just living and appreciating the normalcy of a day that we are both alive and going about our normal routine. While there are usual ups and downs, I just love and appreciate my life just the way it is. I wish like crazy it wasn't hit by PCa, but we both are trying like hell to make sure there are few regrets in the end. I know that more worry and research and trying to push Gary to get more diagnostics (which I wish he would) and his dr (who rarely wants to discuss ANY of what I've researched) Will only lead to regrets of not spending more time just being present in our life right now.
Gary likes to say that most of what we worry about never happens. And that has proven to be true. I usually respond with "I wish I'd worried about you getting PCa."
Diane, try to keep your research handy and shift your focus to something that will bring you lovely memories to hold forever.
Right after Gary was dx'd we decided to spend a chunk of our savings to go on an Alaska Cruise with 11 family members and friends. Believe me, I'm a planner and a worrier, and doing that sure shifted my focus!!!
Best wishes and Bon Voyage yeah
Beth
Posted 4/19/2017 1:47 PM (GMT 0)
Some in the group can be terse and harsh when they feel that your concerns are unfounded. You are concerned because you care about your husband. You are fully within your realm to ask what's next because even with the best pathology something might happen in the future. But today, things look good. Best to continue with your follow ups and just make sure your husband is aware which means he needs to take control and understand when he needs to pick up the phone to see a doctor. He is lucky to have such a loving and caring partner. Take care.
Posted 4/19/2017 3:47 PM (GMT 0)
Diane,
I completely missed this post on 4/17, or I would have replied back sooner. My original reply was not worded correctly. I misread your signature, and did not even see that your hubby had RP on 2/2017. I was just wondering what treatment he had had already. Nothing inferred about future treatment. Anyway, keep doing what you are doing and congrats on the< 0.01.

JackH ,
Thanks for "correcting" me. That was a lot of great info. Also, despite a recent replypost of mine, you are still one of my favorite posters. Might be my foggy brain, sometimes I mis-remembered(or mis-read) as did that famous Pitcher, Roger Clemons,or I might be "off-base", going to attempt to steal Home! Look out!
Wings

Post Edited (Wings of Eagles) : 4/19/2017 2:15:14 PM (GMT-6)

Posted 4/19/2017 11:17 PM (GMT 0)
Dianne
I hope that reading other posts that you realize how fortunate you are and stop worrying. Please get on with your life!
Bob
✚ New Topic ✚ Reply