YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Jake K lives in California, USA. He was 60 when he was diagnosed in August 2008. His initial PSA was 4.1 ng/ml, his Gleason Score was 3+3 and although he says he was was staged T2a, this seems to be his pathological staging. His clinical stage was likely to be T1c. His choice of treatment was Da Vinci - RALP (Robotic Assisted Laparoscopic Prostatectomy). Here is his story

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 organisms. The other surprise was urine leakage on organisms.[he 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.] 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.

 

UPDATED

August 2009

 

 

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.

 

UPDATED

September 2009

 

 

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.

 

UPDATED

November 2009

 

 

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.

 

UPDATED

January 2010

 

 

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.

Jake's e-mail address is: jakesterca1@netzero.com