2 year Post Op PSA recurrance. Radiation? Hormone therapy?

RichardRS
RichardRS Member Posts: 44
edited March 2014 in Prostate Cancer #1
Two years after robotic surgery, my PSA began to rise. It is now at 0.68. This is a low number but it was 0.42 in November so it is a concern.

Radiation has been recommended.

Also Hormone therapy with Casodex and Luperon is also an option.

Has anyone had experience with either of these therapies?
Side efffects?
Impotence?

Thanks
Richard

Comments

  • AVDuke03
    AVDuke03 Member Posts: 10
    #2
    Radiation
    Hey Richard, I had PR in 2000 with a recurrence in 2003. Had 32 radiation treatments at that time and have been clean ever since. Never had any hormone therapy
  • erisian
    erisian Member Posts: 107
    #3
    Hormone Therapy
    Side effects?
    Yes, lots of them. There has been a fair amount of discussion about them here,look back through the older topics. The impotence won't bother you as much as you would think, due to the concurrent loss of libido. I've been on Lupron for over two years, and I can tell you that there are side effects that neither your doctor nor the product information will tell you about, such as organ shrinkage.

    Stay away from it if you have any choice, but if you don't, it's still better than what will happen if you don't take it. Ask your oncologist about intermittent hormone therapy too.
  • 2ndBase
    2ndBase Member Posts: 220
    #4
    Treatment
    I have had one shot of Lupron to shrink the prostate after dx, which was psa of 24 and Gleason 9. Expected to have a 50 % chance to survive two years. I was then 52 and will be 59 in a couple months. My psa is about 100 now and I refuse to take any more Lupron due to the damage it can do. I will survive just as long without any more treatment than the man who loves to follow the doctor's advice and you can believe that or not but I will defend this statement to the end. Plus I will have no further side effects from more treatment. I got the stress out of my life and will be fine. Its about attitude and having people that care. The decisions you make are yours and the results have to be dealt with. All the best.
  • RichardRS
    RichardRS Member Posts: 44
    #5
    AVDuke03 said:

    Radiation
    Hey Richard, I had PR in 2000 with a recurrence in 2003. Had 32 radiation treatments at that time and have been clean ever since. Never had any hormone therapy

    radiation
    Thanks for the note. What was your PSA when you had the radiation? How rapidly had it been rising over the previous year. Mine has gone from 0.3 in May to .95 in Feb with
    25% of the gain in the last two months. They say this is an indicator of the aggressiveness.
  • RichardRS
    RichardRS Member Posts: 44
    #6
    erisian said:

    Hormone Therapy
    Side effects?
    Yes, lots of them. There has been a fair amount of discussion about them here,look back through the older topics. The impotence won't bother you as much as you would think, due to the concurrent loss of libido. I've been on Lupron for over two years, and I can tell you that there are side effects that neither your doctor nor the product information will tell you about, such as organ shrinkage.

    Stay away from it if you have any choice, but if you don't, it's still better than what will happen if you don't take it. Ask your oncologist about intermittent hormone therapy too.

    Lupeon
    Thanks. I want to avoid it. Why did they recommend Luperon for you? Absolute number for PSA or rapidly rising. I have gone from 0.3 to .95 since May.
  • RichardRS
    RichardRS Member Posts: 44
    #7
    2ndBase said:

    Treatment
    I have had one shot of Lupron to shrink the prostate after dx, which was psa of 24 and Gleason 9. Expected to have a 50 % chance to survive two years. I was then 52 and will be 59 in a couple months. My psa is about 100 now and I refuse to take any more Lupron due to the damage it can do. I will survive just as long without any more treatment than the man who loves to follow the doctor's advice and you can believe that or not but I will defend this statement to the end. Plus I will have no further side effects from more treatment. I got the stress out of my life and will be fine. Its about attitude and having people that care. The decisions you make are yours and the results have to be dealt with. All the best.

    Lupron
    Thanks for your comments. I gather the side effects are dramatic. Shrinkage, loss of libido, hot flashes, irritability, fatigue. Sort of like menopause I am told.
    I will look back through other postings. This seems to be an option to avoid if possible.

    Every heard of using Casodex?
  • AVDuke03
    AVDuke03 Member Posts: 10
    #8
    RichardRS said:

    radiation
    Thanks for the note. What was your PSA when you had the radiation? How rapidly had it been rising over the previous year. Mine has gone from 0.3 in May to .95 in Feb with
    25% of the gain in the last two months. They say this is an indicator of the aggressiveness.

    At three years post RP, my
    At three years post RP, my PSA went from less than .001 to .1 in 6 months
  • RichardRS
    RichardRS Member Posts: 44
    #9
    AVDuke03 said:

    At three years post RP, my
    At three years post RP, my PSA went from less than .001 to .1 in 6 months

    good move
    you were smart to get the radiation early.
    I did not react to my slight rise in PSA until I started pushing the docs.
    Then they said: Oh yes, any value of PSA>0 post op is a bad sign. oh well.
  • 2ndBase
    2ndBase Member Posts: 220
    #10
    RichardRS said:

    Lupron
    Thanks for your comments. I gather the side effects are dramatic. Shrinkage, loss of libido, hot flashes, irritability, fatigue. Sort of like menopause I am told.
    I will look back through other postings. This seems to be an option to avoid if possible.

    Every heard of using Casodex?

    Casodex
    I was told to take Casodex after dx and my one and only shot of Lupron. The Lupron was recommended to shrink the prostate so as to make the radiation less extensive. The Casodex was to slow the production of testosterone from some gland other than the testicles. This treatment took my psa down from 24 to .17 Whether or not this extended my life is open for debate. There is no debate that my life is different now but I have totally accepted the change. Given the chance to go back and do it again I am not sure I would have taken the treatment. My boss let me go form a 50K job so as to not have me on the company insurance plan, I lost my insurance, took a job for 7/hr., had to file bankruptcy. So it was not a bed of roses not to mention the loss of much of a sex life. Now 6+ years later I'm very happy to be alive and though my psa is 100 I have chosen to ignore the doctors advice and believe that for me it is the correct decision. I still am able to work and play and enjoy every day.
  • RichardRS
    RichardRS Member Posts: 44
    #11
    2ndBase said:

    Casodex
    I was told to take Casodex after dx and my one and only shot of Lupron. The Lupron was recommended to shrink the prostate so as to make the radiation less extensive. The Casodex was to slow the production of testosterone from some gland other than the testicles. This treatment took my psa down from 24 to .17 Whether or not this extended my life is open for debate. There is no debate that my life is different now but I have totally accepted the change. Given the chance to go back and do it again I am not sure I would have taken the treatment. My boss let me go form a 50K job so as to not have me on the company insurance plan, I lost my insurance, took a job for 7/hr., had to file bankruptcy. So it was not a bed of roses not to mention the loss of much of a sex life. Now 6+ years later I'm very happy to be alive and though my psa is 100 I have chosen to ignore the doctors advice and believe that for me it is the correct decision. I still am able to work and play and enjoy every day.

    choices
    Many thanks for your comments and insights. I find I am in the same position. I will do some type of therapy, but chemical castration does not appeal. I figure I have had a good life, and will continue as long as it is good. Very sorry to hear how badly you were treated. Richard
  • WHW
    WHW Member Posts: 189
    #12
    IG/IMRT Just 74 days following surgery
    Richard,

    I have been down the radiation path and my journey is well documented here. My first post op PSA was .4 at 30 days and 2 successive tests were .56 and .63, so at just 74 days post surgery I started IG/IMRT radiation therapy.

    I had 35 treatments at 2Gy each for a total of 70Gys. I tolerated the radiation well throughout the process will little to no side effects. However, the week after the last treatment I began to have a real problem with urgency. 5-7 times per hour was the norm and a little blood and sluffing off of internal skin and such. It's been a little over 3 weeks and things are certainly looking better.

    This last weekend I returned to the college softball field and umpired a total of 5 games. Never had an accident on the field, although I admit I wore lots of protection just in case. But once the game ended everyone knew to get out of my way and I could barely make it to the john.

    I won't have my first PSA test following RAD until 2/25.

    I discussed the options with my doc should the rad not work and told him that HT was not on my dance card. I would continue to monitor the PSA so I could head off issues if PCa should show up in my bones or the like, but no HT for me.

    I umpire about 200 games a year and this is not a job you can do without testosterone. LOL

    For what it's worth and hope this helps,

    Sonny

    60 years old when diagnosed
    PSA 11/07 3.0
    PSA 5/09 6.4
    Diagnosis confirmed July 9, 2009
    12 Needle Biopsy = 9 clear , 3 postive
    Gleason Score (3+4) 7 in all positive cores
    da Vinci 9/17/09
    Post Surgery Pathology: GS 4+3=7
    Stage: T3a
    Tumor Volume 12.5%
    positive margin, extra-prostatic extension
    30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
    IMRT completed 1/15/10 35 treatments- 70Gy
  • RichardRS
    RichardRS Member Posts: 44
    #13
    WHW said:

    IG/IMRT Just 74 days following surgery
    Richard,

    I have been down the radiation path and my journey is well documented here. My first post op PSA was .4 at 30 days and 2 successive tests were .56 and .63, so at just 74 days post surgery I started IG/IMRT radiation therapy.

    I had 35 treatments at 2Gy each for a total of 70Gys. I tolerated the radiation well throughout the process will little to no side effects. However, the week after the last treatment I began to have a real problem with urgency. 5-7 times per hour was the norm and a little blood and sluffing off of internal skin and such. It's been a little over 3 weeks and things are certainly looking better.

    This last weekend I returned to the college softball field and umpired a total of 5 games. Never had an accident on the field, although I admit I wore lots of protection just in case. But once the game ended everyone knew to get out of my way and I could barely make it to the john.

    I won't have my first PSA test following RAD until 2/25.

    I discussed the options with my doc should the rad not work and told him that HT was not on my dance card. I would continue to monitor the PSA so I could head off issues if PCa should show up in my bones or the like, but no HT for me.

    I umpire about 200 games a year and this is not a job you can do without testosterone. LOL

    For what it's worth and hope this helps,

    Sonny

    60 years old when diagnosed
    PSA 11/07 3.0
    PSA 5/09 6.4
    Diagnosis confirmed July 9, 2009
    12 Needle Biopsy = 9 clear , 3 postive
    Gleason Score (3+4) 7 in all positive cores
    da Vinci 9/17/09
    Post Surgery Pathology: GS 4+3=7
    Stage: T3a
    Tumor Volume 12.5%
    positive margin, extra-prostatic extension
    30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
    IMRT completed 1/15/10 35 treatments- 70Gy

    Post op PSA rise
    Sonny Thanks for your comments and history. I am glad you are still "in the ball game"
    No fun this P-Ca stuff. Best Richard
  • Ralphie62
    Ralphie62 Member Posts: 61 Member
    #14
    RichardRS said:

    Post op PSA rise
    Sonny Thanks for your comments and history. I am glad you are still "in the ball game"
    No fun this P-Ca stuff. Best Richard

    proton??
    Richard, i'm not sure, but i believe there was a study posted on Loma Linda's proton beam site on treatment after surgery with rising psa's...i didn't read it beacause i'm not there yet...(just getting our feet wet)...i believe they claim very small % incontinence and sexual dysfunction...i'm looking into it first line.....also, there are some us trials for Hifu as a second treatment, but it may only be following radiation...i'll look back for you. Also, low side effects with that.
  • erisian
    erisian Member Posts: 107
    #15
    RichardRS said:

    Lupron
    Thanks for your comments. I gather the side effects are dramatic. Shrinkage, loss of libido, hot flashes, irritability, fatigue. Sort of like menopause I am told.
    I will look back through other postings. This seems to be an option to avoid if possible.

    Every heard of using Casodex?

    Casodex
    Lupron stops the production of testosterone in the testes. Casodex mimics testosterone's structure closely enough to bind to, and therefore block, the testosterone receptor sites on cancer cells. So Casodex works in addition to Lupron. There are other drugs, such as ketoconazole, that block the testosterone production from the adrenal glands. If they give you all three, that's what they call the "triple androgen blockade".

    In the case of metastatic Pca, I have been told by my onco that the absolute PSA number is not closely correlated to prognosis or Quality Of Life, but the PSA doubling time is. Some men have good QOL and long survival even with PSA numbers in the hundreds, while others are debilitated and even die with relatively low PSA. My last PSA was 164, and I have several bone mets, but I'm not in any pain from them. In fact, I feel better now than I did when I was diagnosed 2 1/2 years ago, metastatic with a PSA of 798.

    Now even though my disease has progressed to "hormone refractory", my onco wants me to stay on Lupron because giving the cancer more testosterone is, as he put it, "like pouring gasoline on a fire". Just because it no longer requires testosterone to grow doesn't mean that a normal testosterone level wouldn't accelerate it. Another reason I'm still on Lupron is that I still have my prostate, or whatever is left of it. Since I was metastatic at diagnosis, surgery or other localized treatment was deemed pointless. Yet another example of no two cases of Pca being the same...

    Something else you might want to consider trying is Modified Citrus Pectin. I stumbled across it here:
    http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Modified_Citrus_Pectin.asp?sitearea=ETO
    It seems to help prevent Pca metastases from forming. At your stage, that might be important. I'm taking it with the intent of preventing new mets, and I even cleared it with my onco first . He said "It can't hurt, so if you want to try it, go ahead."
  • jimsproblem
    jimsproblem Member Posts: 2
    #16
    Various Therapies
    Hi Richard,

    I'm a new member on this site. I just came upon your letter of concern. I had radical surgery in 2003. They did radiation 2 years later to "clean" up a few remaining cancer cells. Then 2 years later, my PSA rose and they gave me the first of a series of Luprin shots. After the initial muscle pain, night sweats and hot flashes (oh, yes) the PSA went down. Now, it's 2010 and 3 months ago, I began experiencing severe abdominal and back pain and went to a number of specialists with no clear diagnosis. They kept upping the dosage of pain meds. Needless to say, with that came constipation. The pain remained. Stronger drugs. I couldn't eat or sleep and lost 35 pounds over a two month period.

    Now, just today, I've been diagnosed with radiation entinitis (?) Simply speaking, scar tissue and damage done to healthy abdominal tissue 5 years ago from the radiation treatments. Little did anyone suggest that this "clean-up" process could do future damage. There is no cure, I'm seriously debilitated. I'm only 66 and feel like I'm 86. They recommend whole grains, lots of fluids and more powerful drugs. That's it. I hope that anyone considering radiation therapy reads up on the possible side effects, especially if you've had any previous surgeries, like appendix or gall bladder, that can make it even worse. Hope this makes your decision making a little clearer. Choose carelfully. sometimes the cure is worse than the disease. Best of luck to you.
    Jim

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