puterpro's Journey with Prostate Cancer

In 2005, after feeling a lump in the prostate with a digital exam, I went through a painful biopsy and waited a whole anxious month to get a happy negative result . I did not have an elevated PSA. I had been increasingly suffering before and after the biopsy with Benign Prostatic Hyperplasia (BPH). Because my wife was also involved with a Cancer fight (blood-Multiple Myeloma), I decided not to treat the BPH. I continued to have normal PSAs. In early 2010, my wife was in remission, and I decided to treat my BPH with a laser procedure. My PSA was normal. The Urologist just wanted to take another biopsy because the laser procedure would eliminate prostate surgery if necessary in the future. This time the wait for a result was shorter but unexpectedly positive. Gleason score #8 agressive, fast growing. My PSA was still normal.

After the diagnosis, and visiting an Oncologist, I visited both a surgeon and a nuclear medicine specialist. I also had CT and then MRI scans. The Oncologist also provided information on the PUNCH clinical study for agressive, localized prostate cancer. The study provided for chemotherapy preceding a radical protatectomy. Arranging all these tests took a number of months. Unfortunately, the CT and MRI indicated slightly enlarged pelvic lymph nodes -- the largest of which was just under a centimeter. The enlarged nodes neither clearly indicated cancer spread nor eliminated the spread. This made participation in the study questionable, because the prostate cancer had to be localized. The Oncologist suggested radiation therapy (every day for a week) followed by 2 years of hormone therapy. I didn't like the possible side effects and the 2 year long wait to see if the treatment was successful. So, the Oncologist put me on an initial Lupron (hormone) therapy for a couple of months.

After two months of hormone therapy, they took another MRI. My testosterone level was low, and my PSA had dropped. The lymph nodes (especially the largest one) had gotten smaller. However, they weren't small enough to ensure the cancer had not spread. I wanted to be in the PUNCH study, because I believed that the study was the most agressive treatment available and offered an immediate success/failure status. But the Oncologist said that I could only use LUPRON hormone therapy for 1 month more before preventing me from joining the study. I finally convinced the Oncologist to schedule me for a lymph node biopsy during the next month. This biopsy was a bit more painful but worth it. They only biopsied the most enlarged lymph node, which curiously was the node furthest away from the prostate. It turned out negative for prostate cancer. But it was positive for SLL (slow lymphosidic lymphoma). With the fear of prostate cancer spread out of the way, I was accepted into the PUNCH clinical study in October 2010, 7 months after diagnosis.

The Doxitaxel therapy was administered one day at 3 week intervals for 6 treatments over 21 weeks. The effects built up with side effects increasing with each treatment. Tiredness, low concetration, increasing nausea. The other drugs also had a big effect (see additional entries). Scalp hair thinned. Hair elsewhere disappeared. A year after chemotherapy stopped, I started losing big toe nails.

I took Dex 2 days before and 2 days after chemotherapy appointments. They also gave me heavy Dex with the chemotherapy. My family tells me that it significantly altered my personality. I was extremely effected by noises and was very highly emotionally reactive.

They also added Lupron to the PUNCH study. Testosterone went down to almost zero. PSA continued to decrease. Prostate had started to shrink so BPH problem decreased.

I had a small bit of neuropathy in 1 big toe prior to chemotherapy, probably due to type II Diabetes. Half way through chemo, neuropathy extended to the balls of both feet and continues to this date 19 months after chemo treatment ended.

6 weeks after chemo was finished, surgery performed with DaVinci machine. Low after surgery pain. As expected, had catheter for a week. Afterwards, incontinence was not an initial problem. BPH (see initial OH NO entry) was no longer a problem (ha ha). So urination was wonderfully easy.

Because of decrease in prostate size during chemotherapy, surgeon was able to include "nerve sparing" as part of the procedure. Even with regular dosages of Cialis, erection is still not possible, but XXX is consistently possible.

Hair grew back (mostly), actually was less grey and darker on scalp and other body locations. But nail loss on both big toes. Nails growing back very slowly still at this writing am 19 months after end of chemo.

Did not have incontinence problem immediately after surgery. But just over a year later started to have some problems. Oncologist believes that having BPH so many years prior to surgery probably weakened muscles. Also, weight gain of 20 pounds since surgery may be causing additional bladder pressure.

My hair grew back, my toe nails are growing slowly back. my incontinence isn't constant and is not serious. MY PSA IS STILL ZERO.