PSA recurrence after surgery

sbj

mrspjd said:

sbj
I "hear" you loud and clear, but know that a few days or weeks may not make much difference, but the anxiety is still there. In PJD's case, he absolutely wanted the local pelvic nodes treated along with the prostate (he did not elect surgery). His tx was completed in Oct 2010, and he is doing fine with no side effects from the IMRT. Please read Vasco's newest post today carefully, as it, along with the link he posted, explains the thinking about why including the tx of the local lymph nodes may be an important consideration. Also, if the protocol for the addition of HT is a short term course (6 mos), it might also be worthwhile to give that a 2nd look. If the side effects were causing issues, then you could discontinue the usage and expect the side effects to resolve.
Best,
mrs pjd

A few days or weeks do not
A few days or weeks do not make any difference, other than if during that very timespan malignant cells metastasize! There is no way of knowing when this deadly event will occur, other than the certainty, that the longer amount of time you give it, the more likely is such bad outcome. This factor is the major cause of my anxiety.

sbj

mrspjd

sbj said:

A few days or weeks do not
A few days or weeks do not make any difference, other than if during that very timespan malignant cells metastasize! There is no way of knowing when this deadly event will occur, other than the certainty, that the longer amount of time you give it, the more likely is such bad outcome. This factor is the major cause of my anxiety.

sbj

Perspective
It's a tough situation and anxiety/stress can be debilitating. Fear, anxiety, stress are all related. Putting things in perspective, you or I could be walking down the street tomorrow and a car could lose control and kill one or both of us. We just don't know, do we? No way to change the past, predict the future, or know what tomorrow will bring. Best to try not to dwell on what we cannot change or what we have no control over. However, we can work on thinking positively today, living in, and enjoying, this moment right now because in reality, this is all we have for sure. It's a gift and that's why they call it the "present." This philosophy, along with a practice of deep breathing, is fundamental to "Mindfulness Based Stress Reduction Through Meditation," which can be done in as little as one minute during the day. There are books available on this thinking/practice and if you'd like a recommendation, LMK, and I will post the info.

sbj

VascodaGama said:

SBJ; A relook into the irradiation plan
SBJ

I am glad that you have reached a conclusion to your salvage treatment. I also had SRT after a failed surgery, but I choose a plan that included the lymph nodes (inner iliac), because they are usually the places from where cancer metastasizes. I think that you have done research on the details of your decisions; however it would be wise to relook into this aspect of irradiation plan because a repeated radiation of the same area is restrictive and has lots of complications. Here is the comment of Dr Charles "Snuffy" Myers who is regarded as one of the most prominent oncologists on prostate cancer. He quotes;

“….If surgery was the initial treatment, radiation should also be considered. Here there is a major controversy. Do you radiate the prostate bed or extend the radiation to the pelvic lymph nodes? I am biased because I keep seeing men who had radiation to their prostate bed and now have recurred. When we look, we find the cancer in the pelvic lymph nodes only in many of these patients. Radiation to those pelvic nodes then serves to put the patient into complete remission. So, I am a strong advocate of radiation to the prostate bed and pelvic lymph nodes…”

For the full article look here; http://prostatecanceradvice.org/about/myers/androgen-deprivation-therapy-after-surgery-or-radiation/

In my surgery 9 lymph nodes were dissected and all were free of cancer. These nodes are the ones easily to be accessed for dissection but there are others that can be reached/treated only with radiation.

I hope that you discuss about the above with your doctor and get to a final conclusion and peace of mind.
VGama

VascodaGama, I looked long
VascodaGama, I looked long and hard at the two alternatives - prostate bed vs. bed+lymph nodes and concluded that based on pathology report and having discussed with the radiation doctor, concluded bed only was sufficient. Of course, only time will tell whether or not this decision was optimum. The key factor for me was a guy who had bed+lymph tomo-rad who told me he suffered mightily after various with bowel, bladder problems, and still does 2yrs after treatment. Furthermore, this unfortunate fellow now has cancer in his bladder, caused he strongly feels, by the radiation dose. Of course this single encounter does not preclude others who have had success with the higher treatment level. This discussion however did convince me that I could not endue the risk of such torment, and so decided on a narrower, more sharply focused treatment.

Thank you again for your valued comments. Each and everyone of us is different. Each decision a roll of the dice.

sbj

sbj

mrspjd said:

Perspective
It's a tough situation and anxiety/stress can be debilitating. Fear, anxiety, stress are all related. Putting things in perspective, you or I could be walking down the street tomorrow and a car could lose control and kill one or both of us. We just don't know, do we? No way to change the past, predict the future, or know what tomorrow will bring. Best to try not to dwell on what we cannot change or what we have no control over. However, we can work on thinking positively today, living in, and enjoying, this moment right now because in reality, this is all we have for sure. It's a gift and that's why they call it the "present." This philosophy, along with a practice of deep breathing, is fundamental to "Mindfulness Based Stress Reduction Through Meditation," which can be done in as little as one minute during the day. There are books available on this thinking/practice and if you'd like a recommendation, LMK, and I will post the info.

mrspjd,
Absolutely right. I
mrspjd,
Absolutely right. I agree with your perspective. The way I look at it is this: I'm 73 years old and along the way, along my lifeline if you will, others, some dear loved ones, close friends, have dropped by the wayside. So I count myself lucky to still be around. Right now, I feel comfortable with my decision and the possibilities of there being different outcomes. We all know that nobody gets out of life alive. As you say, live the moment - enjoy now.

sbj

VascodaGama

sbj said:

VascodaGama, I looked long
VascodaGama, I looked long and hard at the two alternatives - prostate bed vs. bed+lymph nodes and concluded that based on pathology report and having discussed with the radiation doctor, concluded bed only was sufficient. Of course, only time will tell whether or not this decision was optimum. The key factor for me was a guy who had bed+lymph tomo-rad who told me he suffered mightily after various with bowel, bladder problems, and still does 2yrs after treatment. Furthermore, this unfortunate fellow now has cancer in his bladder, caused he strongly feels, by the radiation dose. Of course this single encounter does not preclude others who have had success with the higher treatment level. This discussion however did convince me that I could not endue the risk of such torment, and so decided on a narrower, more sharply focused treatment.

Thank you again for your valued comments. Each and everyone of us is different. Each decision a roll of the dice.

sbj

SBJ; Confidence is the important thing
SBJ
The most important will be the confidence in the treatment choosen, and I believe yuo did that in the best way.
I hope you a continuous development of your case uneventeful with an excellent conclusion.
Wishing you the best
VG

sbj

califvader said:

decision for myself also
i have the same decision to make. salvation radiaton or hormonal therapy. i do not like what h/t does to you. the side effects suck. so i am thinking of the radiation only. my bladder, urethra, are in good condition. kongo mentioned the method of radiation and i will look into that. my psa has risen much more than sbj. it is now 5.8. i had a bone scan 4 months ago and it showed nothing. 7 years since my surgery so how do i know if the cancer has spread outside the prostate bed? i'm tired of thinking about cancer.

Tired of thinking about the big-C
califvader,

If you've read my posts on this thread you'll knows that, like you, I've also suffered dreaded reoccurrence. While your PSA is higher than mine, I was led to believe by my rad doctor that the actual PSA number is not the only factor indicative of size of tumor. A lot depends, he said, on personal metabolism and location of malignant cells, in our case, the reoccurrence area. Unlike me, you might want to go for a more powerful treatment profile - prostrate bed for sure, but hit pelvic nodes too. While this can mean the possibility of more side affects, most of these affects, I'm told, lessen with time. Furthermore, side effects from HT for example - that you might want to consider too - lessens if not disappears completely a few months after end of treatment.

I understand that radiation can only be undertaken once. You can't go back and have lymph nodes done after a bed session. It's really all or not at all as far as our malignant cell targets are concerned. Me, being lower in PSA, have decided on just the bed. But I worry that if the malignancy is in the nodes, then my treatment will be an utter waste of time and effort. Hopefully of course, this will not be the case.

Today, I start the first of 35 sessions. Each one I hope to be mortal for those pesky maligs.

Good luck and best wishes whatever you decide.

sbj

paterjak

VascodaGama said:

SBJ; Confidence is the important thing
SBJ
The most important will be the confidence in the treatment choosen, and I believe yuo did that in the best way.
I hope you a continuous development of your case uneventeful with an excellent conclusion.
Wishing you the best
VG

the dreaded recurrence...
Hey guys. Thanks for the thread. I would like to recount briefly my history. Any and all comments would be most welcome. I underwent RRP in November of 1996 at age 51. A biopsy had found cancer a month earlier (Gleason 3 + 4). Path report following surgery was mostly good news: seminal vesicles and lymph nodes were clear, but cancer had escaped to the capsule--not beyond. I should note here that PSA just before surgery was 4.5, after having been 4.0 the year before. My prostate was enlarged and the urologist could palpate a spot that was harder than the rest of the organ. Anyway PSA after surgery was 0.1 or less until December of 2009, when it was 0.15. Last month (slightly over a year later) it was 0.22. I never believed I was out of the woods (I imagine few of us ever do) and, as much as I'd like to, I can't come up with an explanation for the numbers other than the obvious one. I have an appointment with a radiation oncologist to discuss next steps. I hope for the best for all of you (and, of course, for me).

sbj

paterjak said:

the dreaded recurrence...
Hey guys. Thanks for the thread. I would like to recount briefly my history. Any and all comments would be most welcome. I underwent RRP in November of 1996 at age 51. A biopsy had found cancer a month earlier (Gleason 3 + 4). Path report following surgery was mostly good news: seminal vesicles and lymph nodes were clear, but cancer had escaped to the capsule--not beyond. I should note here that PSA just before surgery was 4.5, after having been 4.0 the year before. My prostate was enlarged and the urologist could palpate a spot that was harder than the rest of the organ. Anyway PSA after surgery was 0.1 or less until December of 2009, when it was 0.15. Last month (slightly over a year later) it was 0.22. I never believed I was out of the woods (I imagine few of us ever do) and, as much as I'd like to, I can't come up with an explanation for the numbers other than the obvious one. I have an appointment with a radiation oncologist to discuss next steps. I hope for the best for all of you (and, of course, for me).

paterjak,

Your post-surgery pathology, time interval since surgery (before recurrence), time to double etc., indicate to me you're on a path of good outcome. In fact so long is the length of time to reach 0.22 (15 years), you might want to consider not being radiated at all. However, if you do decide on a course of salvage, a critical question you will face is extent of radiation; prostate bed only or bed+pelvic lymph nodes - with or without hormone therapy. Generally, the wider the field of treatment the worse the prospect of side affects. In any event, you should make sure radiation technique offered is a type called TomoTherapy.

This personal account of my experience thus far may help you better envisage what lies ahead:

Personal observations on the first week of 7-week, 35-session prostate-bed TomoThreapy radiation course.

Each patient must be in full-bladder, empty rectum state prior to treatment. This means judging when and what you eat for dinner the previous evening. Approximately half hour before your appointment (1) empty bladder, (2) drink 16oz of water. The displacement of these two organs is scanned before the start of each session. A computer screen shows how optimized fill/emptiness effects their position relative to radiation beam - with bed+nodes they end up more in the way. An empty, or even partially filled bladder hangs like a deflated balloon over target area. So drink up!

The further out the way these organs are the less chance of collateral damage - hence lower side affects.

The first three sessions for me were like Nightmare on Elm Street II. I drank too much (20oz), too early. As a result, lying on the trestle, within the bowels of the machine, I suffered agonizing minutes of self-torture trying to stave off peeing all over the equipment. The reason for this, in part, is that the timing of when one starts treatment can vary by as much as an hour or more - depending on the time each patient takes ahead of you. This variable is greatly affected by the result of the pre-scan. For example, if the bladder is not full enough, or too full, or the rectum has an air pocket (gas bubble), the test is held up for the patient to walk around to try eliminate the condition. Of course after each walk around the set-up scan has to be repeated. If this goes on long enough, those waiting have to visit the bathroom, release their straining bladders and re-drink enough water to replenish. It was not until the 5th session that I was able to better judge amount and time ahead of session to avoid a repeat of this agony.

For me, radiation time is 13 1/2 minutes. To this must be added 5 minutes for set-up to accurately align body with laser-lit lines that cross dead center of the prostate bed marker and tiny tattoo dots placed either side of your lower abdomen, 5 mins for the pre-scan, 5-15 mins for the doctor to come view the screen to okay the test, and 2-3 mins at the end before you can hop off the trestle and rush to rest room - a total of a half hour or more, depending on how quick the doctor can get from his interviewing schedule to the pc.

The test itself is painless and not at all unpleasant - other than the issues described above! The sound reminded me of a laundry room on wash cycle. The key is to carefully judge bladder fill - even to visiting the restroom to 'leak' a few ounces and replenish same amount if you feel 'overfilled' or you're going to be delayed over and above the scheduled time.

sbj

paterjak

sbj said:

paterjak,

Your post-surgery pathology, time interval since surgery (before recurrence), time to double etc., indicate to me you're on a path of good outcome. In fact so long is the length of time to reach 0.22 (15 years), you might want to consider not being radiated at all. However, if you do decide on a course of salvage, a critical question you will face is extent of radiation; prostate bed only or bed+pelvic lymph nodes - with or without hormone therapy. Generally, the wider the field of treatment the worse the prospect of side affects. In any event, you should make sure radiation technique offered is a type called TomoTherapy.

This personal account of my experience thus far may help you better envisage what lies ahead:

Personal observations on the first week of 7-week, 35-session prostate-bed TomoThreapy radiation course.

Each patient must be in full-bladder, empty rectum state prior to treatment. This means judging when and what you eat for dinner the previous evening. Approximately half hour before your appointment (1) empty bladder, (2) drink 16oz of water. The displacement of these two organs is scanned before the start of each session. A computer screen shows how optimized fill/emptiness effects their position relative to radiation beam - with bed+nodes they end up more in the way. An empty, or even partially filled bladder hangs like a deflated balloon over target area. So drink up!

The further out the way these organs are the less chance of collateral damage - hence lower side affects.

The first three sessions for me were like Nightmare on Elm Street II. I drank too much (20oz), too early. As a result, lying on the trestle, within the bowels of the machine, I suffered agonizing minutes of self-torture trying to stave off peeing all over the equipment. The reason for this, in part, is that the timing of when one starts treatment can vary by as much as an hour or more - depending on the time each patient takes ahead of you. This variable is greatly affected by the result of the pre-scan. For example, if the bladder is not full enough, or too full, or the rectum has an air pocket (gas bubble), the test is held up for the patient to walk around to try eliminate the condition. Of course after each walk around the set-up scan has to be repeated. If this goes on long enough, those waiting have to visit the bathroom, release their straining bladders and re-drink enough water to replenish. It was not until the 5th session that I was able to better judge amount and time ahead of session to avoid a repeat of this agony.

For me, radiation time is 13 1/2 minutes. To this must be added 5 minutes for set-up to accurately align body with laser-lit lines that cross dead center of the prostate bed marker and tiny tattoo dots placed either side of your lower abdomen, 5 mins for the pre-scan, 5-15 mins for the doctor to come view the screen to okay the test, and 2-3 mins at the end before you can hop off the trestle and rush to rest room - a total of a half hour or more, depending on how quick the doctor can get from his interviewing schedule to the pc.

The test itself is painless and not at all unpleasant - other than the issues described above! The sound reminded me of a laundry room on wash cycle. The key is to carefully judge bladder fill - even to visiting the restroom to 'leak' a few ounces and replenish same amount if you feel 'overfilled' or you're going to be delayed over and above the scheduled time.

sbj

PSA recurrence
sbj,
Thanks for your thoughts. 15 years seems like a long time to me too and I realize I have been more fortunate than many. But, I'm curious about your observation that I might want to think about not being radiated. That sounds pretty risky to me. What's your thinking?

mrspjd

paterjak said:

the dreaded recurrence...
Hey guys. Thanks for the thread. I would like to recount briefly my history. Any and all comments would be most welcome. I underwent RRP in November of 1996 at age 51. A biopsy had found cancer a month earlier (Gleason 3 + 4). Path report following surgery was mostly good news: seminal vesicles and lymph nodes were clear, but cancer had escaped to the capsule--not beyond. I should note here that PSA just before surgery was 4.5, after having been 4.0 the year before. My prostate was enlarged and the urologist could palpate a spot that was harder than the rest of the organ. Anyway PSA after surgery was 0.1 or less until December of 2009, when it was 0.15. Last month (slightly over a year later) it was 0.22. I never believed I was out of the woods (I imagine few of us ever do) and, as much as I'd like to, I can't come up with an explanation for the numbers other than the obvious one. I have an appointment with a radiation oncologist to discuss next steps. I hope for the best for all of you (and, of course, for me).

paterjak
Welcome to the forum. Wondering if you might clarify your meaning of the term RRP, as it is used most often on the PCa discussion board to mean Robotic Radical Prostatectomy. However, it can also mean Radical Retropubic Prostatectomy, which I believe is your intention, assuming you had an "open" rather than a laparoscopic or robotic operation in 1996. Thanks.

paterjak

mrspjd said:

paterjak
Welcome to the forum. Wondering if you might clarify your meaning of the term RRP, as it is used most often on the PCa discussion board to mean Robotic Radical Prostatectomy. However, it can also mean Radical Retropubic Prostatectomy, which I believe is your intention, assuming you had an "open" rather than a laparoscopic or robotic operation in 1996. Thanks.

MRSPJD
mrspjd,

Yes, radical retropubic is what I meant, which at the time distinguished it from radical perineal. I don't think much (if any) robotic was being done then. Time marches on.

mrspjd

paterjak said:

MRSPJD
mrspjd,

Yes, radical retropubic is what I meant, which at the time distinguished it from radical perineal. I don't think much (if any) robotic was being done then. Time marches on.

paterjak
I didn't think so either (that RRP, as in "Robotic," such as DaVinci was available for PCa in 1996). Although that said, someone is sure to pop up and indicate otherwise.

That is exactly why I posed the question. Thanks for the clarification.

midmi636

sbj said:

paterjak,

Your post-surgery pathology, time interval since surgery (before recurrence), time to double etc., indicate to me you're on a path of good outcome. In fact so long is the length of time to reach 0.22 (15 years), you might want to consider not being radiated at all. However, if you do decide on a course of salvage, a critical question you will face is extent of radiation; prostate bed only or bed+pelvic lymph nodes - with or without hormone therapy. Generally, the wider the field of treatment the worse the prospect of side affects. In any event, you should make sure radiation technique offered is a type called TomoTherapy.

This personal account of my experience thus far may help you better envisage what lies ahead:

Personal observations on the first week of 7-week, 35-session prostate-bed TomoThreapy radiation course.

Each patient must be in full-bladder, empty rectum state prior to treatment. This means judging when and what you eat for dinner the previous evening. Approximately half hour before your appointment (1) empty bladder, (2) drink 16oz of water. The displacement of these two organs is scanned before the start of each session. A computer screen shows how optimized fill/emptiness effects their position relative to radiation beam - with bed+nodes they end up more in the way. An empty, or even partially filled bladder hangs like a deflated balloon over target area. So drink up!

The further out the way these organs are the less chance of collateral damage - hence lower side affects.

The first three sessions for me were like Nightmare on Elm Street II. I drank too much (20oz), too early. As a result, lying on the trestle, within the bowels of the machine, I suffered agonizing minutes of self-torture trying to stave off peeing all over the equipment. The reason for this, in part, is that the timing of when one starts treatment can vary by as much as an hour or more - depending on the time each patient takes ahead of you. This variable is greatly affected by the result of the pre-scan. For example, if the bladder is not full enough, or too full, or the rectum has an air pocket (gas bubble), the test is held up for the patient to walk around to try eliminate the condition. Of course after each walk around the set-up scan has to be repeated. If this goes on long enough, those waiting have to visit the bathroom, release their straining bladders and re-drink enough water to replenish. It was not until the 5th session that I was able to better judge amount and time ahead of session to avoid a repeat of this agony.

For me, radiation time is 13 1/2 minutes. To this must be added 5 minutes for set-up to accurately align body with laser-lit lines that cross dead center of the prostate bed marker and tiny tattoo dots placed either side of your lower abdomen, 5 mins for the pre-scan, 5-15 mins for the doctor to come view the screen to okay the test, and 2-3 mins at the end before you can hop off the trestle and rush to rest room - a total of a half hour or more, depending on how quick the doctor can get from his interviewing schedule to the pc.

The test itself is painless and not at all unpleasant - other than the issues described above! The sound reminded me of a laundry room on wash cycle. The key is to carefully judge bladder fill - even to visiting the restroom to 'leak' a few ounces and replenish same amount if you feel 'overfilled' or you're going to be delayed over and above the scheduled time.

sbj

First detectable PSA since surgery
Age 69, RP 11 years ago, Gleason was 6-7. Margins were well defined. Annual PSA test has always been ND at <0.1 detection limit. Today was advised PSA test of yesterday showed 0.1. I'm not eager for radiation, but if the 0.1 is real and increasing I'll take that route. What do you guys think? Is this a rising PSA? Should I re-test right away? Wait a month and re-test? Since one year after surgery have not consulted with an oncologist since there appeared to be no need. I have not yet met with an oncologist but likely will have a consult next week.

VascodaGama

mrspjd said:

paterjak
I didn't think so either (that RRP, as in "Robotic," such as DaVinci was available for PCa in 1996). Although that said, someone is sure to pop up and indicate otherwise.

That is exactly why I posed the question. Thanks for the clarification.

Midmi636; The meeting w/ oncologist will give you peace of mind
Midmi636

Welcome to the board.
I wonder why you talk about a salvage radiation treatment. PSA=0.1 is very low and not yet considered as recurrence. The difference between <0.1 and 0.1 in terms of PSA in prostate cancer is considered as equal; meaning that it has not changed.
Some laboratories give results as (<0.1) with the meaning of “remission”.
If you are concerned for any other reason or because your doctor has alarmed you, than try having a test done in a laboratory that uses higher sensitive assays in the level of two decimal places (0.XX ng/ml). This is the standard nowadays.

The meeting with the oncologist will give you peace of mind.

Wishing you the best.
VGama

midmi636

VascodaGama said:

Midmi636; The meeting w/ oncologist will give you peace of mind
Midmi636

Welcome to the board.
I wonder why you talk about a salvage radiation treatment. PSA=0.1 is very low and not yet considered as recurrence. The difference between <0.1 and 0.1 in terms of PSA in prostate cancer is considered as equal; meaning that it has not changed.
Some laboratories give results as (<0.1) with the meaning of “remission”.
If you are concerned for any other reason or because your doctor has alarmed you, than try having a test done in a laboratory that uses higher sensitive assays in the level of two decimal places (0.XX ng/ml). This is the standard nowadays.

The meeting with the oncologist will give you peace of mind.

Wishing you the best.
VGama</p>

VascodaGama, Thank you
I appreciate very much your input. I was thinking much along your line of comment, and certainly for repeat higher precision testing before undertaking treatment. My day job prior to retirement involved conducting chemical testing (nonmedical) and understand well the risks of relying on measurements reported at the detection level. I'll advise, and perhaps again search for guidance,following higher sensitivity testing.