Facing possible SRT, PSA .068 3 1/2 years post RALP

Pratoman
Pratoman Member Posts: 17

I had Robotic Prostatectomy in Jan 2015. PSA at the time was 4.3. Surgical pathology upgraded me from G6 to G7(3+4), EPE, SV, LN (9), all negative. PNI Positive (it was negative on biopsy). Margins were “negative Final margins”, meaning my surgeon does frozen section as routine, my frozen section showed positive apical margin, so he respected furyher tissue to obtain negative FINAL margins.

after surgery I remained undetectable PSA at <.02 (Quest) until January 2017, 2 years post op, at which time I was .02 (np”<“).i then switched to labcorp, and since March 2017 my PSA results every 3-4 months have been .033, .033 (again), .046, .06 and now .068.

I  HAD DECIPHER GENOMIC TESTING DONE AT .033 WITH A RESULT OF .37, LOW RISK OF METS.

I have seen 2 RO’s both top names, highly respected well known at major NCCN centers. Both feel that I should have treatment NOW, as recent studies show earlier is better. They both feel, that the negative FINAL margin was “questionable, and PSA rise is being caused by a “few cells left behind”. when I asked one what his confidence level was, he responded 8-%

My Surgeon, feels strongly that I should do nothing until PSA gets to .2 and at that time I should do an AuxuminPET . (I’ve read that at .2, Auxumin will pick up Timor’s 50% if the time.) and if the Auxumin shows nothing I should even wit until .4 or .5. Surgeon is also a highly qualified, well known name who has done over 6000 RALP’s and has followed most of them over time, he says he’s seen many cases like this that stabilize around .1 or higher.

Im Fairly well read, frequent other forums, read many studies, and yet I am still confused as to what to do. I m leaning towards starting SRT after 1 more PSA end of this month. But the thought of doing so with a 20% chance of radiating in a place where no cancer exists is haunting me.

any thoughts would be much appreciated.

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    20% chance of radiating in a place where no cancer exists

    In reading your story, I wonder if you have micrometastases.

    Radiation is administered to defined targets which location is pinpointed via image exams or are assumed with basis on passed experiences (of the attending physician). Most common cases cover the prostate bed and localized lymph nodes, however, a valid image exam could reveal other areas not covered in the tradition field of SRT (just next or at far places), which may represent the 20% you comment above.

    Though your surgeon thinks on the possibility of your case stabilizing, he is not denying a recurrence occurrence, but he wants to try gathering more evidences of cancer location for better assurances of a better treatment planning (100%). He is suggesting following the NCCN guidelines that recommends intervention at a higher level of PSA, above 0.2 ng/ml. In my lay opinion this is absolutely right and in your favor, but you are the commandant and the one to decide. The guidelines were established for sure based on sufficient proves that a SRT done at a higher PSA is also successful.

    Back in 2001 I also struggle like you when deciding on a salvage therapy after failed surgery. I was also haunted by the thought in "... radiating in a place where no cancer exists ..." and that took me to look for means to locate the bandit's hideaways, meeting several specialists and doing some researches (such as the ProstaScint). Soon I found that to locate cancer was not easy for the very high rates in false negatives provided by image techniques available back in those times.
    Dr. Slovin of MSKCC diagnosed me with micrometastases in 2001 and recommended me to follow WW (AS of those times) with quarterly PSA and annual MRI, Bone scans and PET, allowing the PSA to increase freely. During the 5 years on WW all image exams were negative but the PSA increased from 0.24 to 3.80 ng/ml. In 2006, asymptomatic, Dr. Eisenberger of JH recommended me to do SRT (that later failed again).

    Surely we have different cases but in my example, one could think that the late SRT could be the cause of its failure. Many of the doctors following my case along the 18 years of survivorship, including the present oncologist, think that the procedure of my case was reasonable. It seems that micrometastases are linked to false negatives in traditional image studies. They say that the spots not detected today will flourish and be detected tomorrow. In other words, when treating micrometastases at any stage of PSA one is playing Russian roulette. We may hit and kill the bandit for good or just suffer the treatment side effects and expect an encounter with the bandit again later, but this time cannot radiate it again for the risks of fistulas (prohibition of rads over rads). Probably leaving it to grown further until it can be detected one gets more assurances of success and lesser risks.

    I agree that PET is the best image exam to locate the bandit but in low PSA levels of 0.5 ng/ml it must be done using radiopharmaceuticals specific to prostatic cells, such as the 68Ga PSMA, if one wants to avoid false negatives. Other isotopes like the F18-choline or F18-fluciclovine (Axumin) requires a much higher PSA level above 1.8 ng/ml to assure detection of cancerous PCa. In fact, Axumin is not specific to PCa which in my opinion is not the most recommendable to you. The result of the genomic test identifies your type of cells as propitious to get killed for good if radiated, independently of the timing of cell's life cycle. The assurance for cure is high if the field covers the whole metastases.

    I would recommend you to get the opinion from other specialists before deciding.

    Best wishes in your journey.

    VGama

     

     

  • Pratoman
    Pratoman Member Posts: 17
    SRT at PSA of .068

    thanks for your insight VascodeGama. 

    As you allude to, at a PSA so low, my problem is, there is no scan on earth that will detect where the cancer is.

    i thought about getting another opinion. However after 3 opinions, not sure that more will do anything, except further confuse me.

  • Old Salt
    Old Salt Member Posts: 1,514 Member
    Puzzled

    Pratoman, you wrote 

    But the thought of doing so with a 20% chance of radiating in a place where no cancer exists is haunting me.

    Where does that 20% come from?

  • Pratoman
    Pratoman Member Posts: 17
    edited July 2018 #5
    Old Salt said:

    Puzzled

    Pratoman, you wrote 

    But the thought of doing so with a 20% chance of radiating in a place where no cancer exists is haunting me.

    Where does that 20% come from?

    The 20% comes from

    Old Salt.The 20% comes from The Radiation Oncologist telling me that he thinks the cancer is coming from the prostate bed, whic is where they would radiate, and when I asked him what his confidence level is, he said 80%. While my margins were negative, I had a frozen section intra-operative positive margin, at which point the surgeon went back in and removed more tissue to get a negative final margin. RO thinks some cells were left behind and is 8-% sure that is the case. If he’s wrong, then the treatment will be  for naught.

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    The percentage of failed SRT depends on patient’s initial status

    I think that the percentage estimate is your RO's experience obtained from the many SRT he performed. No doubts that the procedure of your surgeon in 2015 in dissecting extra tissues from  the area where positive margin were identified creates confusion in judging the location of any present metastasis. He could have successfully eliminated any cancer at that area meaning that the present recurrence could be from cancer at a different zone. I never heard of such a procedure in dissecting the gland in pieces. It is common in open surgeries to dissect some lymph nodes upfront, wait for the pathologist's comment and proceed if the lymph nodes are clean or stop the surgery if these are found to be positive to cancer. Surgery would have no meaning so that the patient is moved into radiation. 

    Probably at 2015 adjuvant RT (ART) would have been better instead of trying to clean up by dissecting extra tissues. In any case, the overall percentage of failed SRT is higher than the 20% of your RO. You may like to read the following article from a series of studies;

    https://www.medscape.com/viewarticle/849319#vp_1

    MSKCC got nomograms to predict the success of a salvage treatment in here:

    https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

    Another article on the success of SRT;

    http://www.drcatalona.com/quest/quest_winter08_2.htm

    Best,

    VG

  • Old Salt
    Old Salt Member Posts: 1,514 Member
    After pondering on this issue

    After pondering on this issue, I will join the two eminent ROs based on the following thinking:

    If cancerous cells are 'hiding' in the prostate bed (a distinct possibility), I would not want them to metastasize to other parts of the body while waiting for the PSA to rise to a somewhat arbitrary level of 0.2. 

    I agree that such salvage radiation therapy may not hit the cancer cells where they are hiding, but it's the best 'shot' you have. Even if you did wait for the PSA to break the 0.2 threshold, it's by no means certain that it will be possible at that time to locate where the cancer cells are 'hiding'.

    More in general, medical decisions are often based on 'statistics' and this is certainly true of prostate cancer.

     

  • Pratoman
    Pratoman Member Posts: 17
    edited July 2018 #8
    Frozen Section and decisions

    @Vasco, thanks for the links. I have played with the MSKCC Nomograms. The NY RO, Dr Michael Zelefsky is at MSKCC, and he’s told me they don’t really dictate accurately, because there are a limited number of men in the database with my exact, or anyone’s exact pathology.

    regarding the frozen section and further cutting, it’s not a common practice , but some surgeons do it as a matter of practice, others only when they are suspicious. My Surgeon does it always. He told me at the follow up visit that having positive frozen section and negative final margin, is not as good as having negative frozen section. But it’s better than having positive final margins. It didn’t do me much good, apparently. My fear is could the additional cutting have caused some remaining cancer to spread to distant places through the blood.

     

    @OLD salt, I am agreeing with your analysis. I feel tht if in fact I am recurring, this is my one and only remaining chance for cure. So I might s well do it soon. And not wait for .2

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    Cancer does not spread to far places that easily

    Pratoman,

    Cancer travels to distant places via the blood stream but it doesn't do that so easily or even settle at a distant place at will. Firstly it must avoid trapping at the filtration sentinels, the lymph nodes. Those cells that manage to pass then will confront the inauspicious newer environment where it will try living. Localized affected cells will ring the alarm triggering the immune system that will persistently regulate the problem, killing the bandit and disposing off the unwanted buggers.
    It takes time for such successful occurrence to take place (if any) and it would depend on a timely period of weakness of our other systems (a moment of stress, a sickness of tissues at the newer environment place, etc). In the study of above link they found only 16% of far metastases cases in ten years of survival post RP. In other words, you could expect to have far metastases at present if your cancer case has existed in your systems back in 2005.

    No one here is saying that you have recurrence today but the increased PSA and the the story you told us leads to think on such a possibility. Accordingly, as Old Salt comments above you may go through SRT before reaching the NCCN recommended thresholds. After all, the pathological stage in 2015 should have been pT3aN0MX which places your case into this discussed dilemma of ART vx SRT. You are also a G7 (low) intermediate risk case. You did not radiate two years ago but intend to radiate in two years from now (calculated PSA of 0.2 ng/ml for its doubling). The only missing piece is if the field for the radiation covers extensively the localized areas that should include deep lymph nodes, at the expense of more risks and side effects. Far metastases, if any, can always be radiated later as it would not stand in the areas planned for the SRT of today.

    In any case, this is a difficult moment of your life. It is difficult to all us when confronting the time of a decision on an action regarding PCa. In your shoes I would stick by your own threshold no matter what others think. You do not need to rush. Just be sensitive and follow what you trust and feel comfort as that will be the best choice and we all will applaud you for the courage. We try being helpful but cannot decide for you.

    Best,

    VG

  • Pratoman
    Pratoman Member Posts: 17
    edited July 2018 #10
    Thank you Vasco, very helpful

    Thank you Vasco, very helpful post.

    i I tend to seek treatment after one more PSA test at the end of this month

  • RobLee
    RobLee Member Posts: 269 Member
    Welcome back to CSN Prato

    Hi, we know each other, and we have discussed this before. But I see you joined CSN nearly three years ago, but have only posted a couple times outside of this thread.

    You also know that I had adjuvant radiation one year after prostatectomy, but our cases are completely different.  So my experience really has no bearing on your situation.  So it really comes down to the numbers.  Your meetings with top doctors have resulted in an estimated 4 out of 5 chance of successful SRT at this point, so only a one in five chance of the remaining cells being located outside of the treatment zone.  If I understand those estimates, then it actually sounds pretty good.

    Of course, the doctors are hesitant to "over treat", so the possibility of causing you some SE's of radiation with a 20% possibility that it will do you no good.  On the other hand, you DID have a positive margin (whether or not it was cut away during surgery) increasing the likelihood that you have or had cancerous cells remain locally in the prostate bed.

    Furthermore, you had a SECONDARY grade 4 component in your Gleason, but only after re-evaluation.  It might be safe to assume that there was not much of it, and that most of your cancer was Gleason grade 3.  Grade 4 is the type most likely to spread locally, outside the prostate.  But as I understand it, grade 5 is the type that is more likely to metastasize to remote areas of the body.  Fortunately you had RP including a thorough dissection, therefore if there had been a tert 5 for example then it would have been reported (am I assumign that correctly?)

    So the short version of this is: 80% likelihood of being locally confined, possible positive SM being most likely grade 3, which does not metastasize.

    So there may be a chance that the low grade cancer cells will fail to thrive and your PSA will stop rising. That would tend say do nothing for now and hope it stabilizes before spreading any further. OR zap now and hope it's all still local and there are no damaging side effects.  The worst thing to come out of RT - other than possible SE's, is that if the treatment area is not broad enough, then you missed the target using your one and only shot, and the area cannot be re-treated in the future.  But if it has already spread outside that area, then you wouldn't be re-treating it anyway, right?

    If you do go for SRT the question becomes whether or not to starve the cancer with ADT. But then you lose the ability to measure the success or failure of the RT, at least for a period of months or possibly years... like me.  I've completed 18 months on Lupron, and my PSA is undetectable, but I won't know until another 18 months have passed whether my PSA will stay 0 or will rise slightly and stay there, or will it continue to rise again?  So right back to where you are right now my friend.  Except in the meantime I threw everything possible at it.

  • Pratoman
    Pratoman Member Posts: 17
    edited July 2018 #12
    Hey Rob,

    Hey Rob,

    ‘I originally joined this forum to get info on Breast Cancer 3 years ago. But here I am.

    thanks for the response. As I said I probably won’t wait much longer, to pull the trigger. If PSA is going to stabilize, it’s going to have to do so soon.

  • Pratoman
    Pratoman Member Posts: 17
    New data just recieved
    Regarding my situation, described in the original post in this thread, I recently asked that the slides be relooked at, and that i be informed what % of pattern 4 cells there was in the g7(3+4) which was the "dominant tumor" (1.1 cm) AND also what the gleason was at the positive margin in the frozen section, before the surgeon obtained negative final margins.

    Today after a 3 month wait, i got the results as follows:
    The tumor shows approximately 5% of a Gleason pattern 4, wiht the remaining 95% pattern 3

    And this:
    While the final margins are negative, the involved apical margin (part A (which was the frozen section)) showed Gleason pattern 3 at the margin

    So now, this new information gives me pause, and i am not so sure whether i should do SRT at such a low PSA.

    Any thoughts on whether and how this new information might inform my decision would be welcome. I intend to discuss this with my Drs , obviously.
  • Old Salt
    Old Salt Member Posts: 1,514 Member
    Here's my thought

    My July 5 comment still holds. I would fire away at potential sites of trouble.

  • Pratoman
    Pratoman Member Posts: 17
    edited July 2018 #15
    My plan is

    i more or less agree old salt. I think the one thing this does for me is makes me lean towards not doing HT with the SRT. Of course I plan to get guidance from the Drs.

  • Pratoman
    Pratoman Member Posts: 17
    update

    since My last post, I had another PSA 3 weeks ago and it came back at .082, and I met with my RO. This made me a little nervous as my rise had been very linear at .01 every 3 months. This rise of .014 was after only 6 weeks.

     After speaking with my RO, at MSKCC, and torturing myself for 2 weeks, I finally made a decision yesterday, to act, not only with SRT, but also ADT. RO says ADT would give me, in his guess, a 5-10% additional advantage. I want to get every advantage possible. It’s only 6 months of ADT so I’m just hoping and assuming I can handle it. If not I can always stop after a few mo this. It will be monthly shots of Firmagon, which I know won’t be fun.

    Then, on seeing my surgeon for one last conversation yesterday, I got him To do another PSA Test. I got the results today, and ironically, it dropped, to .078, this was 17 days since my .082. l don’t plan to change my mind though, I think .082 - .078 is within the margin of error.

    So wednesday is my first shot. I’m not looking forward to it, but the sooner I start the sooner I finish. I’m also having a colonoscopy on the following Monday, I’m hoping my belly isn’t too sore for me to lay on my side while they do the colo thing.