Had Surgery in July 1993, with a result of suspicious margins. Several months after RP my PSA was about 0.5 ng/ml so I underwent Radiation Therapy [RT] 3 times a week for about 12 weeks.
About a year after RT my PSA bottomed out at undetectable.
About 1995 my PSA started a very slow upward climb. My doubling time was typically about 2 to 3 years. I have had several bone scans, MRI'S, Cat Scans, etc over the years and all were clean. At my choice I have avoided Hormone THerapy. My decision was to start it if any tests showed metastasis or doubling time dropped below 1 year.
My latest PSA [December 2007] was 26.0 ng/ml and doubling time was about 14 months so I will be starting hormone therapy [HT] soon.
The only symptoms I have had over the 13+ years is an irritable bladder probably from the RT and some occasional minor incontinence. I have handled the normal impotence problems associated with my treatments by using a VED. It has been quite effective. I don't particularly recommend my course of action for others---the conventional wisdom now is to start HT much earlier, but I am happy with the choice I made.
In December of 2006 I was still on "WATCHFUL WAITING' with a PSA in the high 20's and a doubling time of 14 months. This was about 15 years after initial treatment.
In April 2007 my PSA climbed to 35 and doubling time was about 10 months so I started 4 month Lupron injection and one Casodex pill every day. I am almost one year on Hormone therapy now and my PSA is down to 0.1. I have encountered the usual side effects of hot flashes, loss of libido , low energy. etc but I have been able to tolerate them.
Life continues normally-we spent 2 weeks in Italy in September and 2 weeks in Florida in February this year. In October I had problems with blood clots in urine and blocked bladder. I had a bladder neck opening procedure; it was blocked by scar tissue from radiation treatment.
Well it is a little past my 16th anniversary of diagnosis so I thought it time to update.
Had some success with the Hormone Therapy for 2 years with my PSA reaching a nadir of 0.1 about a year ago. Then it was at 0.2 for three successive readings and the last reading was 0.6. Looks like I am probably getting Hormone Resistant.
Had first consult with an Oncologist yesterday---he wants to wait for next PSA [in July] before taking action. He also ordered Bone Scan and Pelvic CT.
I WILL UPDATE AGAIN IN ABOUT A YEAR. I INTEND TO BE AROUND FOR SEVERAL AFTER THAT.
I am now about 17 years past my initial diagnosis.
Have been on Hormone therapy for about 3 1/2 years. My PSA bottomed out at 0.1 after 14 months on Hormones and has been very slowly increasing since then. It currently is 3.6.
I have no symptoms other than back pain which is associated with spinal stenosis. I spend an hour or so at the gym twice a week strengthening my back. My Doc wants to schedule bone scan, CT scan, etc in about 4 months to make sure there are no mets. Last round about 18 months ago showed all clear.
My current biggest concern is when to move on to Ketoconzole and Cortisone.
My hormone therapy is continuing to not be effective. My PSA has been slowly rising for about a year or more and is now about 7. About a month ago I had some continuing rib pain so was subjected to a bone scan and pelvic cat scan. All tests were negative.
I will see my Uro Doc in about 3 weeks and discuss what/when about treatment strategy. The rib pain has gone away.
Last Fall my urologist recommended I start seeing an Oncologist after he removed a small cancerous lesion at my bladder neck in late December 2010.
I chose Dr. Gary Hudes who is chief of Medical Urologic Oncology at Fox Chase Cancer Center just outside Philadelphia. I first saw him in early 2011. He recommended I stop taking Casodex and watch for a PSA decline due to its withdrawal. That did not work (current PSA is 15.0) so in March 2011 he added 150mg Nilandron daily to the Lupron.
At the end of April 2011 I have a PSA, Bone Scan and Pelvic/Abdomen CT Scan scheduled and based on those tests the next step will be determined. Meanwhile I continue a normal life except for major incontinence due to several bladder neck procedures in the past.
Last post in March 2011, my PSA was about 15 and withdrawal from 50 mg daily Casodex did not work. My Oncologist kept me on four months Lupron shots and put me on 150 mg Nilandron daily (to replace Casodex).
Quite surprisingly, in mid April my PSA was reduced to 1.5 and just this week the latest PSA is 0.2. Bone scan and pelvic CT scans done in March were all clean. I am overjoyed at all the good recent news. Back in March I was assuming that Keto and/or Chemo were soon going be necessary for me. It just tells me that there are a lot of things we still don't know about PCa. I would never have expected that just changing from one type of anti-androgen to another would have such significant results in PSA reduction.
My last test a week ago came back at 0.1. Amazing and unexpected.
Have been on Lupron and Nilandron since failing Lupron and Casodex [with PSA at 15] in 4/11. PSA has now been steady since 7/11 at 0.1.
Last entry about 18 months ago I was on 4 month Eligard injection plus Nilandron in tablet form.In July 0f 2012 my PSA was 0.1. By January 2013 it ha climbed to 0.7 and currently [June 2013] it is 3.2. I was taken off Nilandron last week and they will check for a withdrawal drop in a few weeks. The next treatment ,when needed, will be to add Flutamide to the Eligard. I just had full body bone scan and chest-abdomen pelvis CT Scan that were all clean. Have now passed the 20 year mark of living with this beast and at 76 years old expect at least 10 more.
Previously was on Eligard and Nilandron. When PSA hit 3.6 in June 2013 I was put on Eligard only. Last 2 PSA'S [October 2013 and January 2014] were amazingly steady at 0.2. Withdrawal seems to be working well right now. I am pretty much fully incontinent but manage it well by wearing pads and changing them thru the day every couple hours. Incontinence is due to several bladder neck operations I had years ago. I am now a 21 year survivor. I also have stage 4 kidney disease and will need dialysis at some point which could complicate my cancer treatment. Even with the various side effects and Kidney Disease, I live a pretty normal life for 76 years old.
Continuing Eligard injection with Nilandron withdrawal. Have been on this since about October 2013 and PSA has stayed in range of 0.1 to 0.2. Have lived with incontinence since about late 1990's and libido problems for about 10 years. Otherwise I have a pretty normal life; fishing whenever I can, grandkids close by and run a small business selling "guy stuff" on Ebay. For you NEWBIES don't let the docs scare you into a treatment you are not comfortable with. I was told in 1993 that I had at best "5 or 6 years left" unless I went on hormones immediately. I said no and did watchful waiting until 2007 when my PSA hit about 30; then I started hormones.
Continuing with 4 month shots of Eligard, Psa remains at 0.2. Only side effects are incontinence. Since I am now on dialysis for kidney disease [not related to any PCA issues] I am making less urine and the incontinence is only a minor issue. Now about 24 years since diagnosis.
Frank's e-mail address is: firstname.lastname@example.org