THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

Due to my father having prostate cancer, my primary care had me on an annual PSA test except I skipped 2007. When I was tested in June 2008 my PSA had doubled from 2006 to 4.1. My primary asked me to retest in July and although it was lower at 3.2 my free PSA was not acceptable. I was referred to an urologist/surgeon who felt a firmness during the DRE and did a follow up biopsy.

The biopsy returned with cancer in 7 of 12 samples. Each rated as 3+3=6. The urologist recommended Da Vinci and my primary concurred. We are very fortunate in having a primary that we trust. The urologist stated that he has done hundreds and I would be in good hands. I even asked for a reference and a patient very similar to my circumstances and age called to answer my questions based on his experience. I only happened on to the Yana site after my surgery. I wish I had seen it earlier. My decision would probably be the same but more of my questions could have been answered as things came up. Even though I told the surgeon I've had bad reactions to sulpha and Cipro drugs, he was mostly sceptical and gave me a couple tabs of Leviquin (Cipro like) before and after the biopsy. I believe this resulted in an inflammation afterward and I was uncomfortable for a couple weeks. I have recently read on Yana where others have reactions too.

Surgery was done the first week of November 2008. I stayed an extra day in the hospital because of nauseous feeling and unstable walking. Most of my recovery was fine. I've since found that burning on urination, various pains and constipation are fairly common. I've also found you don't get much info from your surgeon in the brief visit. Usually I find him with his hand on the door to leave just after entering.

My pathology report showed clear margins, confined to prostate, absent extraprostatic extension, absent involvement or invasion of seminal vesicles, vascular or perineural. Gleason 3+4 = 7, 5-10% of 4 and location in right mid-gland.

I was lucky in being almost 100% continent in six weeks although I did get jock itch in the groin due to mostly the sweating under the pad. This was uncomfortable and I would have taken more care with baby powder if I knew the potential. ED has been fairly minor and using only about 1/2 tab of Cialis returns me to pre-surgery condition. We don't like to talk much about it but I am a bit shorter since the surgery but my penis does seem to expand back on arousal and I think it is regaining some normal size. Still no doctor tells you that when you initially sit on the toilet, your pee direction is altered due to the reduction and you can end up peeing on your pants at first (I was a slow learner). I do have initial pain at first on arousal and after orgasms. The other surprise was urine leakage on orgasms. [The leakage of urine when climaxing sexually is very common after surgery. For some reason it is rarely discussed and very few men are warned of this probability before surgery. This is known as Climacturia] Luckily my wife and I were in the shower doing therapy when it happened. I've since had more control now but the surgeon didn't have much comment or advice.

My six week PSA in December 2008 was 0.10 ng/ml. The same 0.10 was true for the 3 month in February and 6 month in May 2009. The surgeon thought he might have left some tissue behind while peeling off the bladder base. I pointed to the pathology report that states "Left Face Margin... benign prostatic tissue... ganglion. Negative for Tumor". I think he agreed this might be the source of the residual but his hand was on the door while talking. Really I have nothing but praise for the guy. I have another test in August and hope this is as high as it goes (even better if it goes less than 0.10).

In June I broke my ankle and ended up with an erector set in my ankle bones. I'm still in an non-weight bearing cast for a few more weeks so I have plenty of time to answer e-mail questions of my experiences. I've learned a lot from the questions asked and others here.

While not completely surprised, I was disappointed to find out that my 9 month post-surgery PSA had risen to 0.20 ng/ml. My urologist said he was worried but wanted to follow-up with a bone scan and another PSA in two months. I asked him directly if there is more likely distant spread since all the margins were clear and he said that since I had 7 of 12 cores positive, it could have penetrated to a lymph node (not the biopsy but merely there was a lot of cancer). If the PSA does not return to 0.10, he will have me see a radiation specialist.

My wife is very concerned and I'm using information gleaned from here to help her understand that she should not fret at this time.

Since my PSA rose in August to 0.2, my urologist wanted me to re-test in October 2009 and include a bone scan. I was also having lumbar spine area pain. I was worried this might be due to bone tumors so I requested the tests sooner. The bone scan was clear and the back pain has been attributed to recovery from my ankle break.

My PSA taken on September 21, 2009 remained at 0.2 ng/ml. My urologist won't be surprised if my PSA rises again so he would like a retest in 6 weeks and once it does he will refer me to a radiation specialist. Although he still thinks there is still a possibility that the PSA is due to some residual benign prostate tissue.

My PSA after surgery was 0.10, remained 0.10 until 9 months later when it rose to 0.20; and when rechecked recently it rose to 0.30 one year post surgery. The urologist/surgeon has referred me to a radiation oncologist.

Although my post-opt pathology was clear, the surgeon remains hopefully that the recurrence is local. He simply states that the pathologist does not examine all of the margin and may have missed some extension.

I came out of surgery without long lasting side effects, i.e. short lived incontinence (only an occasional drop catches me off guard) and usable erections with Cialis (and not always necessary). I'm worried that these side effects will resurface with radiation and I won't be as lucky again.

Awaiting my appointment with the radiation guy; hopefully he will give me some indication that the radiation still has potential for cure and worth the QOL (Quality of Life) risks.

After my PSA rose to 0.3 ng/ml in November 2009, the urologist referred me to a radiation oncologist. I met with him the first week of December 2009. He exclaimed "looking at your chart you should have been cured" but agreed with the urologist that radiation was my final chance at cure and best started before PSA reaches 1 ng/ml and better before 0.5 ng/ml. I wanted to wait until after the holidays and the radiation oncologist had no problem with starting January 2010.

We retested my PSA again on January 4th and it remained at 0.3 ng/ml but no miraculous drop to undetectable (darn those supplements did not do the job). He advised me to take 2000 IU of D3 and said he took 4000 IU himself. I began radiation on January 19, 2010 and will have 39 sessions to a total of 72 gys.

I wonder if my PSA would have levelled off without radiation especially since 90% of my tumor was rated Gleason 3 (5-10% of 4 according to the pathology report). Unfortunately with an estimated doubling time of 6-7 months, I didn't feel I had the luxury of experimentation.

In January 2010, I started my salvage radiation (Tomotherapy equipment, 39 sessions, 70.2 gy) after getting small tattoo dots for alignment. I needed to drink 12 ounces of water prior treatment to help protect the bowel. The radiation oncologist also recommended I take 2000 IU Vitamin D and at least 1000 mg of fish oil (I took 3000 mg in 3 1000 mg doses over the day). He said studies showed this reduced injury to the bowel.

The most prevalent side effect I had was fatigue. Not debilitating but I generally went to bed a hour or two early. Others I know took naps. This continued for several months after and diminished gradually. I had some burning on urination for a while. I had achieved essentially full continence after surgery except for a small drop if I coughed unexpectedly. I may have experienced a drop or two more during radiation (perhaps due to irritation) but this is minor (never did I need to return to a pad) and back to normal. So far I have been fortunate by not having much bowel problem. Occasionally a little more loose than normal and some hemorrhoid problems but once again over the last 9 months things are back to normal. None of these side effects ever came close to changing my normal routines. I may have experienced some light ED but my GP gave me some Cialis samples and all returned back to normal.

I had enough time to return to mostly normal prior to radiation. The newer radiation machines (like Tomo and newer versions of equipment) have been touted as being more precise so this might be why my side effects haven't been much so far.

My PSA hit 0.40 during a test five weeks into the radiation but dropped to 0.20 at the three month post SRT (Salvage Radiation Therapy), down to 0.10 at 6 and 9 months post SRT. The radiation oncologist said it could take a year or more before I become <.1 and as long as it isn't rising not to worry. I've had a hard time finding studies indicating how long before SRT is considered a success at a PSA level of <0.10

My best to all, Jake

April, 2011 was the first time my PSA dropped to <.1 (undetectable), 13 months after completing SRT (Salvation Radiation Therapy) and 29 months after my Robotic LRP.

My radiation oncologist predicted that it would take about a year for my PSA to go undetectable upon completing SRT. A book entitled "Advanced Therapy of Prostate Cancer" authored in 2000 by Martin Resnick and Ian Thompson [This book appears to be out of print. It was published by B.C. Decker Inc and the ISBN reference is ISBN 13:781550091021] summarized studies indicating the average SRT response is gradual between 2 and 48 months with a mean of 12 months.

My side effects from the SRT are mostly minor at this point. I'm taking daily supplements of pomegranate, green tea, fish oil and D3. My next PSA won't be for another 5 months and I'm glad for the break.

I just received the results of my 19 month post-SRT (Salvation Radiation Therapy) PSA; test and it came in at <.1 (my first undetectable reading ever was at 13 months post-SRT). I was a bit worried at my first PSA; reading right before completing SRT since my PSA; had gone up compared to the start of SRT. After that though, a very gradual decline until the first undetectable at 13 months post-SRT.

Long way to go but I'm moving in the right direction. No active medical treatment for Pca; I'm still taking pomegranate extract, fish oil and D3. The later two were added for triglycerides going through the roof and D3 for a low level seen on blood test. Not sure if there is a true impact on Pca but the supplements are inexpensive and my level is holding at <.1 so I don't want to change anything.

Minor urine leaking during sudden moves and sex. [This is termed Climacturia and is a fairly common side effect] Urologist just prescribed imipramine hcl (actually an anti-depressant but off label use is for minor incontinence). He suggested taking it either at a low-dosage per day or as needed (I am still going through occasional bouts of radiation irritation when the leaking occurs). I'll report on effectiveness after trying the drug for a while.

Thanks Terry for continuing the website!

My 31 month post SRT PSA; came in at less than .1 again. I'm taking pomegranite extract, D3 and fish oil. While this might not be helpful for preventing/delaying prostate cancer recurrance (not sure if proper evidence exists) but for a small price I'll not tamper with my success so far. I have an occasional bout of slight leakage during rapid movements and during sexual activity. My urologist prescribed imipramine hcl and this helps. I feel like my erections aren't as strong as prior to SRT lately. Not sure if this is just age or a result from the radiation. My life otherwise is good.

Our best to all,

Jake

I mentioned to my urologist at my last appointment that I passed a blood clot and urinated blood briefly. He thought it might be radiation cystitis (burn from the SRT) and scheduled a cystoscopy procedure to investigate. the passing of blood clot and bleeding a couple months ago. The thought of the procedure was mostly worse than the actual procedure. Lidocaine jell was inserted into the penis (worse part was the coldness) and about 20 minutes later the procedure was done. Some discomfort felt but tolerable. About a week of burning on urination followed too.

The Uro saw no bladder tumors but said a portion could not be seen since the bladder started filling due to length of time I laid on the table (probably won't get a discount though for a partial cystocscopy). Some redness seen but nothing special.

His conclusion was if there was another episode of bleeding he would investigate further and include the kidneys for possible tumors. I see him again in 5 months.

I also had a testosterone test done about a week ago since I had complained about losing some of my giddy-up. The level came in at 380 which the Uro said was on the low side. He did not feel comfortable doing anything at this point since I've only been undetectable for about a year and half past SRT and didn't want to add any fuel to the fire if any residual cancer remains.

I'm now into my third year of undetectable PSA; starting 13 months after ending Salvage Radiation in March 2010. Some lower gut aches that seem to be subscribed to the radiation scaring, the pains will come and go. Unexpected drips occur, frustrating but no need for pads although it seems that on bike rides it does leak more as well as during sex. My low testostrone continues with a reading of about 340 which may account for my lower level of giddy-up in the bedroom and some overall fatigue (nothing real serious but obvious to me). I'm due for my annual urologist visit and I'll speak to him about testotrone replacement. Last year with a similar lower reading he felt it was too soon to consider.

All in all, doing ok.

My best to all,
Jake

Pretty much the same as in March 2014, pains in the groin area which have been suscribed to radiation (SRT) side effects. Transit, and not life altering. I've quit seeing my urologist and have been following up with my primary for PSA; tests every 6 months and annual DREs. The urologist and office were very rude the last visits since I brought PSA; tests on scripts from my primary (the lab was the same). I figured if my PSA; rises above detectable, I'll be off to a medical oncologist.

Take care,
Jake

Jake's e-mail address is: jakesterca1 AT netzero.com (replace "AT" with "@")

NOTE: Jake has not updated his story for more than 15 months, so you may not receive any response from him.