I am a 47-year-old very fit and active cyclist. I went to my GP for my annual check up in Jan '12. I was having some nighttime frequent urination issues and as a precaution he ordered a PSA just as a precaution. I received a call two days later that my PSA was 4.9 and he wanted to see me again that afternoon.
DRE "boggy" typical of prostatitis, antibiotic and retest in two weeks. After the DRE I was in much discomfort, I assume the prostate was the problem. The pain went away after about two weeks. The second test, PSA 6.7 urology appointment. Urinalysis positive for WBC [white blood cells], DRE "boggy" urologist says this is textbook prostatitis. Antibiotics and another two weeks, PSA 5.9, relieved it is going down.
Urologist wants to biopsy but since I am so smart (sarcasm) and have been reading the Internet for the last month or so I resisted. Check again in June, 5.1 still coming down so I'm still optimistic. Dr. says we can retest in 3 months or biopsy now. I chose to wait 3 more months.
Sep '12 PSA 5.5, reality has finally grabbed me by the prostate. Dr. offered in office or outpatient and sedation, I chose sedation. Biopsy Friday morning, a very anxious weekend and then the call Tuesday evening. 18 samples taken all 9 on the left are clear, 5 of 9 on the right have cancer one group was 20% I believe and the other was 5%. I'll know more tomorrow after my appointment to go over the pathology and options.
My Dr. told me he is going to recommend daVinci LRP, but we would discuss all options tomorrow. I've read that you should not rush into a decision on treatment. I don't feel like I am rushing since I have been researching different scenarios for the last nine months. I feel like the last nine months have been a dressed rehearsal and now it's show time. More to come shortly, thanks to all that have posted before me.
Lori and I went for the consult with my urologist yesterday 10-5-12, two weeks post biopsy. He explained that the reason they wait two weeks is for your emotions to settle down a little. Once you get your mind around what is happening you can make better decisions. I agree 100% with this, the first week was a little traumatic but by the second week I was ready to make a decision.
He helped me rule out the options that were not really viable for an active 47 year old. That leaves surgery and since my primary recreation is competitive cycling the best option is LRP. Again with my age he actually suggested I go elsewhere for surgery to give me the absolute best chance at a full functioning recovery. He recommended Dr. Marc Milsten in Tulsa, OK. I found a few others on this site that used Dr. Milsten with excellent results so I have confidence that my outcome would be as good or better. I am scheduled to see Dr. Milsten on 10-9-12, at that time I ask the questions that my urologist suggested and others he refrained from answering since he won't be doing the surgery. More to come later.
Met with Dr. Marc Milsten yesterday, 10/9/12. After just a short time I felt very confident that this was the correct decision for me. We scheduled surgery for 11/9/12 7:00 AM in Tulsa. I have an appointment 10/31/12 for a TRUS and pre-op at the hospital. I am ready to get this done and start the healing process. More to come.
So I had surgery on 11/5, Dr says it went perfect. I had excruciating bladder spasms during the first day after surgery. Finally by nightfall those were under control. I slept good that night, I'm sure the anesthesia and the Percocet they were feeding me helped. I felt pretty good the next morning, Dr showed up around 7:15 checked me over and said I could go home that afternoon if I wanted. Some time after 3:00 I was discharged and we headed home. The first night was pretty uneventful. The cramps I had when trying to pass gas were the worst I had ever had. Even today 11/14 a week later I still have bad gas pains, I'm ready for this part to be over. Tuesday 11/13 I had my catheter removed, not a great experience but definitely not terrible. When the catheter came out I leaked for a good 15 seconds. Dr went over my pathology report and let me know not to worry at all about leakage for the first few days. I soaked my first pad after about 2 hours. From then on I have dribbled but I haven't had any real leaks. I was also given 5mg Cialis for daily use, I started this the night of the 13th. I'm experiencing painful urination with just a tint of blood in the last few drops. My pathology report showed the cancer was much worse than I thought. 30% involvement, both lobes involved. Still 3+3(6) with 3+4(7) so they staged it at T2c. Good news is the margins are clear. I go back for my first PSA test on 12/4. More to come.
Today 11/27/12 is 22 days post op. I feel 100% better than last week. I still have a little pain while sitting in the perineum area, riding in a car for more than an hour is not comfortable. My abs are still a little sore also. I have just a little incontinence, mostly dribbles. Erections came back strong the morning after my catheter was removed. I had blood in my urine for 10 days after the catheter was removed. I generally feel very good, I expect to keep improving rapidly. 12/4/12 is my next Dr. visit, I expect to be released for full activities and a PSA test.
Went the DR for my 1 month follow up yesterday 12/4/12. Dr. said everything I describe is normal for this point in recovery. My bladder still seems small, I have to get up several times during the night to pee. Dr says he usually hears this complaint at 1 month but rarely hears it at 3 months. Sex life has been back to normal since the day after the catheter was removed. I am still taking the Cialis 5mg once a day so I don't know at this point how much that is helping. Yesterday I played golf on the way home from the Dr without any pain. Last night I rode my bike for about 20 minutes without any pain. I am a little tender today so I will wait a few days before trying the bike again. This morning the Dr called with my PSA results, 0.03. I think that is a great start and I will sleep better tonight.
12/21/12 As of now, a little over 6 weeks I have been pad free for a little over a week. I have very little pain, more of a discomfort when sitting for an extended period. I have been off of Cialis for about 2 weeks and have noticed a slight difference. It does take a little longer to get a full erection but I would say I am very close to where I was pre-op. For me I made the right decision with the right surgeon.
Merry Christmas to all.
After being off of Cialis for several weeks I decided to get back on the daily 5mg. Erections are hard and easy to achieve with the daily Cialis. I'll probably stay on it for 6 months or so and try without again. I hope by then the nerves are healed enough to get back to normal. If this is the worst I have to go through then so be it. I have no incontinence and sleep most nights without a bathroom trip, depending on if I've had any drinks that evening. I have my next Dr. appt and PSA 2-7-13 hoping for more good results.
Had my 3 month check up with PSA on Feb 7th 2013. Everything seems to be normal for this point in the journey. I still have some perineal pain when I've been sitting for long periods or on my bike. My PSA came back at 0.01 so I couldn't be happier about that. My brother and I are going on a cruise to Mexico on the 11th, can't wait. I'm glad I found this site it has helped me get through this. I will do my best to keep it updated for years to come.
Feel free to email me with any questions.
Tim
The only thing that bothers me right now is perineum discomfort when sitting for long periods. I'm off of the Cialis and don't have any problems at 10 weeks post op.
Normal bladder and erections without meds. The only concern is my PSA rose slightly from .01 in February to .02 in August. This was with two different labs however so I will try to stay positive until the next test late October.
Three months later and it went up again. .03 is not a big number but it is more than I was expecting. It is not easy to stay positive when you see the number crawling north but I will try.
Dr. wanted me to retest after my last PSA to verify that it was not a mistake. It went up again to .04, it's not an earth shattering number just a trend.
No side effects at all. My PSA continues to move slightly upward. I hope that it settles somewhere close to it's current value soon. On a positive note, it only went up .01 in the last 3 months.
June '13 0.01
August '13 0.02
November '13 0.03
December '13 0.04
March '14 0.05
Thanks to all that have posted here. I see several men that have results like mine that settel or go down over time. That gives me great confidence that mine will do the same.
Thank you all.
Tim
I currently have no side effects and life is pretty much normal. The only exception to normal life is the 3 month PSA testing. My PSA continues to rise .01 every 3 months. I wish I had my Dr. had never started ultra-sensitive testing after surgery.
To update from the last time.
June '14 .06
August '14 .07
More testing to come, stay tuned.
I also would like to thank all that have posted here.
It's been a while since I updated, December of '14 PSA dropped to .05 from .07 in August of '14. I waited until April '15 to test again and my PSA went up to .08. I am planning on waiting until late November or early December to test again. Right now I try not to worry about it since it is moving slowly. I believe at some time I will have to have some sort of treatment since I am only 50 years old. Stay positive and best of luck to all.
So Dr. wanted be to stay on a 6 month schedule. Tested Wednesday, came back .09 which is undetectable but still rising. I guess the good news would be it took 6 months to go up .01 so maybe it is starting to stabilize. I still have no side effects from surgery, I will check back in 6 months. Good luck to all.
To update my situation, I have been putting off PSA test due to insurance changes. The previous one was April of '16 at .10. Last week I went to my family Dr for my annual checkup and he added a PSA to my regular blood work. It came back .126 which puts it on track for raising about .01 every 3 months.
I currently am suffering no side effects at all, life is normal except for dry orgasms. Hopefully it will level out or stop going up. I probably won't check it again for another year.
Best wishes to all.
Update: My surgeon's office called and after getting my latest PSA he wants me to come see him to discuss options.
Back to the Dr. Oct 13th for a 6 month PSA. In March it was .12, so in 6 months it went up to .17. Not crazy numbers but it still concerns me. I was very dehydrated and it took 4 sticks to get enough blood for the test, hope that had an effect on the test. I am at the 5 year mark and should be really excited that I am still "cancer free" but the PSA going up keeps me from celebrating. So in summary my PSA has continued to rise since 3 months post-op, typically .01 every 3 months. I feel too good to start ADT, and don't know that I will if the doctor suggest it. I do know I will get a 2nd and maybe 3rd opinion before I do. At 52 and living a very active lifestyle I really don't think I ADT is in my future.
In April I was back for another PSA test. 1st time since surgery 11/05/12 that my PSA went down, .15.
Back for another PSA test last week 10/26/18 and PSA is back to where it was a year ago at .17. I feel good about where I am at 6 years post op. I will be back for another PSA test in April '19. If it stays close to where it is I think we will go to annual test instead of bi-annual.
Well wishes to all and email if you have questions.
Back to the urologist for a PSA test. Dr. calls which is not the norm so my heart sank, .25. Dr. wants me to start Casodex, I don't I think I am going to search out an oncologist for advice. Using the Memorial Sloan Kettering doubling tool I am at 10 months even though it is actually almost 3 years for a true double. Confused and scared.
April 2019 PSA was 0.24 and DR wanted me on Casodex, I didn't. May 1, 2019 I started taking the dewormer protocol and June 1 PSA was down to 0.2. August 12 2019 PSA was 0.215 up a little. Not being sold on the dewormer I stopped that protocol and retested Dec 2 2019, PSA 0.275. Started the dewormer again and will retest about the first week of April 2020. I also am on a loose KETO diet, lost a little over 20 pounds, not that I was really over weight. I'll try to remember to update in April.
PSA had been creeping up since surgery in November of 2012. In July of 2021 it reached 0.3 so I finally decided to seek some opinions on a treatment plan if needed. I visited two diferent cancer centers and decided on MD Anderson Houston. I visited with Dr. Ngyuen and her NP Patricia Crabtrey about treatment options. Under their advisement we did a PET scan and MRI. Results showed a small suspicious spot at the anastomosis in the prostatectomy bed.
On September 16 of 2021 I started Lupron, PSA was 0.3 and testosterone was 599. Side effects were not great as anyone could imagine, hot flashes, fatigue, and some weight gain were the worst. I returned to MDA on Nov 16th for radiation simulation. We went home to prepare for our return visit expecting to be in Houston for 8 weeks.
I started IMRT/VMAT on November 30, 2021 at that time my PSA had dropped to 0.1 and testosterone was 13. The following is the dosage plan.
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Site |Modality |Start |Last |D/FX |FX |Dose
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Prost SV Fossa |x06 |11/30/2021|1/5/2022 |210 cGy |25/25|5250/5250 cGy
fossa CD |x06 |1/6/2022 |1/12/2022 |210 cGy |5/8 |1050/1680 cGy
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The first month was pretty non eventful as far as side effects with the exception of what I described from the ADT. As the treatments wore on fatigue continued to get worse and I had some intestinal distress. I made it through the treatment plan and we headed home.
The next several months were basically the same as far as side effects go. The first weeks of July I started to feel like I was gaining some strength back and I was not feeling as fatigued. By the third week the hot flashes were very few. I had a follow up at MD Anderson on July 20. PSA was <0.1 and testosterone was 459.
At this point the doctors were very pleased as was I. I will continue to follow up every six months for the next several years.
Email with any questions.
Not much has changed in the last year. I still have some fatigue from radiation I suppose. PSA remains undetectable, testosterone bounces around from 350's to 550's. I feel good and am pretty much back to normal activities. Good luck to everyone fighting the fight.
It has been almost 3 years since I started and finished my radiation program. The fatigue is gone and life is back to normal. No side effects from surgery in 2012 or radiation in 2021.
Tim's e-mail address is: foretexas AT gmail.com (replace "AT" with "@")
