Failed robotic prostatectomy, now looking at radiation

jim1530
jim1530 Member Posts: 11
in Prostate Cancer #1

Hello! Yes, I am back.  I joined this discussion board in late January, 2011.  I had just been diagnosed with prostate cancer.  At that time I wrote:  "I was diagnosed with prostate cancer on 12-30-2010. I am 53 years old in otherwise good health. My psa was 4.3. My last psa was 1.2 in 2007. Gleason score was 6 (3+3) but a review of the slides by another institution says Gleason score is 7 (3+4) with perineural invasion. 8 out 12 bioposy cores positive, 4 on each side. 75% of volume of biopsy from right side has cancer, 25% on left side. 2.0 x 3.0 x 1.0 mass shown on ultrasound. no seminal vesicle involvement. Stage is estimated to be t2c."

I had robotic prostectatecomy on Feb. 10, 2011.  I decided to go this route because I was scared about the extent of the cancer. And if the cancer came back, I wanted to have radiation as an option.  I was also hoping that the surgery would spare both nerve bundles. The patholgy report confirmed my worst fears: epe with focal positive margins on the right side.  With the cancer outside of the prostate, the right nerve bundle could not be saved. Diagnosis: Gleason 3+4, p3ta, perineural invasion, positive margins, negative seminal vesicles, negative lymph nodes.  But I was not offered adjunct radiation at that time.  My surgeon said that I "should be okay."

After surgery, I actually was ok, for awhile.  I regained continence after about 4 months. My psa went to below .1, and that was the way my lab reported the findings:  <.1   But sexual function was another matter.  I have never regained full sexual function, and the oral agents are no help.  Injections are some help, but a hassle and so I have just lost interest in sex.

In July 2012, my psa was .05.  I was told not to worry since it was below .1.  But then my psa jumped to .1 in March, 2013, and to .12 in September , 2013, and a recheck of the psa showed up at .13 in November, 2013.  My worst fears have been apparently been realized: a biochemical recurrence.  Now I have been referred to a radiation oncologist.  I am scared and I am really comcerned about the side effects od radiation, especially sexual side effects.  I would appreciate any thoughts, suggestions, or comments.

 

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #2
    Look for protocols in salvage therapies

    Jim

    I am sorry for the news. The trend of the PSA tests seem to indicate recurrence however you wouldn’t lose anything by waiting until the PSA reaches the threshold recommended by AUA of 0.2 ng/ml to engage on a salvage therapy. In my times of recurrence, 0.2 was the threshold for declaring  clinical/surgery failure and 0.4 for starting a salvage therapy.
    Your latest PSA increased a small fraction and that is enough and common to have posts from survivors expressing anxiety but these are just tiny fractions of serum PSA. In any case the increase is significant but still lower than the “magical” value of 0.2. I think that you should get informed about salvage treatments and their side effects, and get advice from your doctor about treatment protocols. Some may be decided according to the patient's wishes. Quality of living is at jeopardy.

    Here is the link to your previous thread; http://csn.cancer.org/node/210858

    Here you got ideas from discussions on similar observations from patients in similar status;
    http://csn.cancer.org/node/253695
    http://csn.cancer.org/node/262465
    http://csn.cancer.org/node/219769

    Best wishes and luck in your journey

    VG 

  • BLUEpac6
    BLUEpac6 Member Posts: 43
    #3
    Failed

    To make a long story short in Jan. 2009 found out my psa was 110 gleson was 9. Doctors I went to said it was out of prostrate and to dangerous to do surgery and only offered radiation.A friend of mine whose daddy died with prostrae cancer was talking to his doctor about me and his doctor called me and said if you do not have the prostrate removed and it comes back thre is not much left for cure.He put me in touch with surgeon at Baylor Clinic in houston and he did surgery but said if it was in my lymph he would have to close me back up but they were clear and he removed my prostrate. this was in aug.2009. my psa stayed down for about one and half years and it went up to .06 and i WAS TOLD iNEEDED SALVAGE RADIATION.I june 2011 I began 35 radiation treatments at texas oncolgy in longview texas.In mycase I never new I was having radiaton except for having to go 5 days a week for 15 min.a treatment.I never had any side effects or felt anything at all from the radiatoin.Two differnt oncolgist after putting all my history in a compuer told me after radiation if the cancer re turned it would take 6 years.My psa now is less than .001.I am 67 years old and feel like I never had anything wrong except Ihave not been able tp have a erection since surgery. Hope helps with possible out come of radiation.Just try to use a oncologist that has plenty of experince with prostrate because mine made sure the bladder was completly out of way before he wold start a treatment and he was careful about the rectum. I will pray you do fine.

  • jim1530
    jim1530 Member Posts: 11
    #4
    VascodaGama said:

    Look for protocols in salvage therapies

    Jim

    I am sorry for the news. The trend of the PSA tests seem to indicate recurrence however you wouldn’t lose anything by waiting until the PSA reaches the threshold recommended by AUA of 0.2 ng/ml to engage on a salvage therapy. In my times of recurrence, 0.2 was the threshold for declaring  clinical/surgery failure and 0.4 for starting a salvage therapy.
    Your latest PSA increased a small fraction and that is enough and common to have posts from survivors expressing anxiety but these are just tiny fractions of serum PSA. In any case the increase is significant but still lower than the “magical” value of 0.2. I think that you should get informed about salvage treatments and their side effects, and get advice from your doctor about treatment protocols. Some may be decided according to the patient's wishes. Quality of living is at jeopardy.

    Here is the link to your previous thread; http://csn.cancer.org/node/210858

    Here you got ideas from discussions on similar observations from patients in similar status;
    http://csn.cancer.org/node/253695
    http://csn.cancer.org/node/262465
    http://csn.cancer.org/node/219769

    Best wishes and luck in your journey

    VG 

    Thanks for the advice

    Thanks for the advice

  • jim1530
    jim1530 Member Posts: 11
    #5
    BLUEpac6 said:

    Failed

    To make a long story short in Jan. 2009 found out my psa was 110 gleson was 9. Doctors I went to said it was out of prostrate and to dangerous to do surgery and only offered radiation.A friend of mine whose daddy died with prostrae cancer was talking to his doctor about me and his doctor called me and said if you do not have the prostrate removed and it comes back thre is not much left for cure.He put me in touch with surgeon at Baylor Clinic in houston and he did surgery but said if it was in my lymph he would have to close me back up but they were clear and he removed my prostrate. this was in aug.2009. my psa stayed down for about one and half years and it went up to .06 and i WAS TOLD iNEEDED SALVAGE RADIATION.I june 2011 I began 35 radiation treatments at texas oncolgy in longview texas.In mycase I never new I was having radiaton except for having to go 5 days a week for 15 min.a treatment.I never had any side effects or felt anything at all from the radiatoin.Two differnt oncolgist after putting all my history in a compuer told me after radiation if the cancer re turned it would take 6 years.My psa now is less than .001.I am 67 years old and feel like I never had anything wrong except Ihave not been able tp have a erection since surgery. Hope helps with possible out come of radiation.Just try to use a oncologist that has plenty of experince with prostrate because mine made sure the bladder was completly out of way before he wold start a treatment and he was careful about the rectum. I will pray you do fine.

    Thanks for your advice and

    Thanks for your advice and kind thoughts.  What was your psa right before you started radiation?  And do you know the dosage you received at each tretment?

  • BLUEpac6
    BLUEpac6 Member Posts: 43
    #6
    failed

    My psa at the time before surgery was like 10 but that was because I had thought I was going to have radiation and seed implants and had a date set to start but before I had to take a hormone shot and wait 90 days before treatments began and the hormone shot lowered the psa,but it enabled me to have time to find another route which Ithink I made the right choice. I think they said the dosage of radiation was 65.

  • Josephg
    Josephg Member Posts: 455 Member
    #7
    Failed

    Hi Jim1530

     

    My robotic prostate surgery failed, as well.  However, my PSA never fell below .05, and it began rising quickly after 6 months.  I subsequently had concurrent radiation and hormone therapy, and I've posted my experiences here.

     

    I had a checkup last week, and my PSA is sitting at .02, and all of my bloodwork results are within acceptable ranges.

     

    http://csn.cancer.org/node/188931?page=5  October 30th, 2013 - Salvage Treatment

     

    I hope that this is helpful to you with your evaluation and final decision.

  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    #8
    Josephg said:

    Failed

    Hi Jim1530

     

    My robotic prostate surgery failed, as well.  However, my PSA never fell below .05, and it began rising quickly after 6 months.  I subsequently had concurrent radiation and hormone therapy, and I've posted my experiences here.

     

    I had a checkup last week, and my PSA is sitting at .02, and all of my bloodwork results are within acceptable ranges.

     

    http://csn.cancer.org/node/188931?page=5  October 30th, 2013 - Salvage Treatment

     

    I hope that this is helpful to you with your evaluation and final decision.

    Maybe Not Radiation

    Everybody wants to run to RT, If the PC is still contain within prostate.When Proton radiation might be good option to look at and don't wait to long. If the PC is not contain and in Lymph nodes, RT is maybe a waste of time. Once the PC is in Lymph nodes, it's in all lymph node thru out the body. RT does not work in that case.  

  • jim1530
    jim1530 Member Posts: 11
    #9
    ralph.townsend1 said:

    Maybe Not Radiation

    Everybody wants to run to RT, If the PC is still contain within prostate.When Proton radiation might be good option to look at and don't wait to long. If the PC is not contain and in Lymph nodes, RT is maybe a waste of time. Once the PC is in Lymph nodes, it's in all lymph node thru out the body. RT does not work in that case.  

    Decided to have radiation

    Thanks to all for your support and comments.  I have met with an medical oncologist at University of Chicago and my own urologist.  The both recommended radiation.  This is due to the rise of psa to over .1 and apparent steady increase over time.    Bone scan and ct scan was negative, as expected with this low amount of psa. Given the fact that the cancer is pt3a with positive margins, I was told that it appears very likely that the prostate cancer cells are in the prostate bed.  I began my radiation on Monday.  This appears to be my best chance for the all-to-elusive cure.  I chose not to wait unitl the psa was .2 due the pathology of my disease.  I figured I was headed towards radiation anyway, so I decided to get it out of the way.   I did not want to wait until summer to have the treatments.

    Again, thanks for all of your kind thoughts and prayers.

  • lewvino
    lewvino Member Posts: 1,010
    #10
    jim1530 said:

    Decided to have radiation

    Thanks to all for your support and comments.  I have met with an medical oncologist at University of Chicago and my own urologist.  The both recommended radiation.  This is due to the rise of psa to over .1 and apparent steady increase over time.    Bone scan and ct scan was negative, as expected with this low amount of psa. Given the fact that the cancer is pt3a with positive margins, I was told that it appears very likely that the prostate cancer cells are in the prostate bed.  I began my radiation on Monday.  This appears to be my best chance for the all-to-elusive cure.  I chose not to wait unitl the psa was .2 due the pathology of my disease.  I figured I was headed towards radiation anyway, so I decided to get it out of the way.   I did not want to wait until summer to have the treatments.

    Again, thanks for all of your kind thoughts and prayers.

    Good luck on the radiation. I

    Good luck on the radiation. I finished 38 rounds of IMRT last of October. I did really well with the radiation. Some fatigue but it left quickly after my treatments ended.

     

    lewvino

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #11
    lewvino said:

    Good luck on the radiation. I

    Good luck on the radiation. I finished 38 rounds of IMRT last of October. I did really well with the radiation. Some fatigue but it left quickly after my treatments ended.

     

    lewvino

    Being positive is important

    Jim

    I think you did well in starting the treatment. You got the confidence and that feeling is important along the treatment.

    Can you describe the protocol. How much Gys and the number of sections. Will you add any HT drug as adjuvant?

    Remmenber to drink lots of water one hour before each section. It helps to protect the bladder walls.

     

    Best wishes for successful outcome

    Happy Holiday season.

     

    VGama  Wink

  • Josephg
    Josephg Member Posts: 455 Member
    #12
    jim1530 said:

    Decided to have radiation

    Thanks to all for your support and comments.  I have met with an medical oncologist at University of Chicago and my own urologist.  The both recommended radiation.  This is due to the rise of psa to over .1 and apparent steady increase over time.    Bone scan and ct scan was negative, as expected with this low amount of psa. Given the fact that the cancer is pt3a with positive margins, I was told that it appears very likely that the prostate cancer cells are in the prostate bed.  I began my radiation on Monday.  This appears to be my best chance for the all-to-elusive cure.  I chose not to wait unitl the psa was .2 due the pathology of my disease.  I figured I was headed towards radiation anyway, so I decided to get it out of the way.   I did not want to wait until summer to have the treatments.

    Again, thanks for all of your kind thoughts and prayers.

    Decision

    Jim,

    I believe that you made the correct decision.  Unless you're an avid winter wonderland enthusiast, having your strength well on the way back to its pre-treatment norm by the summer will be good for you.  I had my radiation/hormone treatment combo start in the beginning of the summer, and it did make my time outside, particularly working around the yard, more challenging from a fatigue perspective.

    Good luck with your treatments!

  • jim1530
    jim1530 Member Posts: 11
    #13
    VascodaGama said:

    Being positive is important

    Jim

    I think you did well in starting the treatment. You got the confidence and that feeling is important along the treatment.

    Can you describe the protocol. How much Gys and the number of sections. Will you add any HT drug as adjuvant?

    Remmenber to drink lots of water one hour before each section. It helps to protect the bladder walls.

     

    Best wishes for successful outcome

    Happy Holiday season.

     

    VGama  Wink

    Thanks for your support.  I

    Thanks for your support.  I believe that I am scheduled for 40 treatments with a target total of 66 to 68gy. I will take advice and drink a lot  (of water). I am not doing any Ht right now.  This was agreed upon between my doctors and I.  While some studies have a benefit from such adjuvant therapy (http://www.ncbi.nlm.nih.gov/pubmed/22300563), others have not found a distinct advantage (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076799).

    It is my hope that the cancer is only in the prostate bed.  If I were to have hormonal therapy now, and my psa went down, then I would not know if the psa drop was due to the radiation or hormone treatments.  This way, if my psa drops, then I have real hope that the bandit is gone.  At a minimum, I hope to delay HT as along as possible.

    I wish you a great holiday season and best wishes for good health in the new year!

     

  • jim1530
    jim1530 Member Posts: 11
    #14
    Josephg said:

    Decision

    Jim,

    I believe that you made the correct decision.  Unless you're an avid winter wonderland enthusiast, having your strength well on the way back to its pre-treatment norm by the summer will be good for you.  I had my radiation/hormone treatment combo start in the beginning of the summer, and it did make my time outside, particularly working around the yard, more challenging from a fatigue perspective.

    Good luck with your treatments!

    Thanks to all for you kind

    Thanks to all for you kind thoughts.  One week done!! 

  • donsantell
    donsantell Member Posts: 5
    #15
    Proton Beam Therapy

    Sorry to hear of your problems.  I have just recently, 11/1/13, completed a course of Proton Beam Therapy in Jacksonville, FL at the University of Florida Proton Institure.  While there I met a few men who had had suregery and their cancer came back.  They were at the proton center to either receive Proton therapy for their metastastic prostate cancer or IMRT with the latest new machine.  There are only 2 of these in the US.  The one in Jacksonville and another at the MD Anderson Center in Houston, TX.  These are very precise machines and have greatly helped people in your situation.  There are 11 Proton Beam Therapy centers in the US with more opening soon. 

    The web site for the Floriday center is www.floridaproton.org, You will find a lot information on that site that may be of help to you. 

    Good Luck

    Don Santella

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