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Paul C and Marc live in California, USA. He was 50 when he was diagnosed in May, 2007. His initial PSA was 4.6 ng/ml, his Gleason Score was 4+3=7 and he was staged T2a . His choice of treatment was Laparoscopic Surgery. Here is his story.

In May 2007, at age 50, I had a routine checkup which included PSA and DRE. My doctor felt a bump, and said he wanted to see how the PSA came back.
Previous readings in previous years had been 2.7 ng/ml and 3.2 ng/ml ; this time, it was 5.2 ng/ml and he referred me to a urologist, whom I saw ten days later.

Urologist repeated the PSA and DRE; still a bump on one side, but the PSA was now 4.6 ng/ml. I now had my first lesson in ambiguity and measurement error. Biopsy clearly indicated. Clinical stage: cT2a.

Biopsy went fine, without much real pain -- sorta like twelve rubber-band snaps. Several cores came back positive, the worst being a 4+3. By that time, I had done a ton of reading, so I wasn't surprised. But I was still shocked.

Urologist recommended open surgery. I shopped around.

I investigated da Vinci robotic laparoscopic surgery and thought it looked right, but the waiting time was long, so I scheduled a surgery date for 11 weeks off while I continued to shop for info and options:

* I saw a radiation guy - promising, but I wasn't too keen on the side effects and difficulty of salvage later if things returned.

* I consulted an active-surveillance advocate - clearly not a good option for a 50-year-old with moderate to aggressive disease.

* I investigated cryosurgery, but decided its success rate wasn't good enough.

* I spent $450 for a one-hour consult with a general oncologist who basically said I was investigating all the right things; he agreed that treatment was certainly indicated, but that it was tossup between radiation and surgery.

* I investigated HIFU, but decided it was too inconvenient to go out-of-country. (When will it be approved in the U.S.?)

So I kept my date with the surgeon in late August.

Pathology report re-staged me as a pT3a N0 Mx:

* Some extraprostatic extension (EPE) (boo!)
* No spread to nodes or seminal vesicles (yay!!)
* Surgical margins were negative (yay!!)
* Post-op Gleason sum per was 5+4. (boo!!)

I'm writing this in October. Post-surgically, I've had a very good course, relatively speaking. Catheter came out at 6 days post-op, very little leakage (in fact, I had to strain a bit to pee).

I've not had any erections at all in seven weeks, even with Viagra or Cialis, but I see encouraging signs of plumpage and lengthening, and I'm still able to orgasm if I really put my mind and hand to it, despite remaining soft (and having no cum).

I'm quite unhappy about the loss of hard-ons, but I've learned, from comparing stories, that they will probably return with patience and continued handiwork. If the improvement plateaus, I'll try VEDs and cock rings; if that doesn't do the trick, I'll try injections.


My big worry at this point (October 2007, seven weeks after surgery) is my PSA:

* Before surgery, my PSA was 5.2 ng/ml.

* Four weeks after surgery, when it should have been 0.1 or below, my PSA was 4.7 ng/ml.

* Hoping for a lab error, we measured again one week later (five weeks post-surgery): 4.6.

So far, nobody has been able to explain this to me, and I've seen nothing like it in the literature. This is not a recurrence or relapse in PSA, it's a non-decrease despite prostatectomy. Do I have a dozen spare prostates tucked around somewhere??

My doctor is concerned, and has prescribed lots of tests (CT scan, bone scan, PET scan), and he's strongly hinted that he will be recommending a bout of radiation and/or androgen blockade, but he has still not offered any kind of explanation. **

So it's clear my story has barely begun, despite my hope and expectation that prostatectomy would be the final word. Stay tuned for more chapters ..

 

UPDATED

February 2008

 

 

I decided to hold off, at least for now, on the radiation therapy and ADT options presented to me by my oncologist, and to pursue modalities that seem to me more conservative.

First, I completely reformed my diet. I weaned myself off red meat, sugary snacks, and almost all dairy (I had previously been drinking about five gallons of nonfat every week). I started taking vitamin D3, selenium, vitamin E, lycopene, and melatonin, as well as pomegranate juice, green tea, fish, and soy milk.

Secondly, I researched various clinical trials and decided to enroll in TORI GU-01, which investigates a combination of two targeted agents (bevacizumab=Avastin every three weeks, together with erlotinib=Tarceva 150mg every day). The first agent inhibits angiogenesis, thus denying microtumors the blood supply they demand, and the second agent interferes with growth-factor signals, preventing microtumors from marshalling resources they need to grow. The side effects have been quite unpleasant -- facial rash and pimples, diarrhea, queasy stomach -- but quite bearable.

At the same time, I was falling deeper into a clinical depression (despite psychotherapy that I had initiated a few months earlier), and I started taking Cymbalta. It took several weeks to kick in, but I now seem to have pulled out of the worst of the apathy and hopelessness, although I'm still prone to milder episodes.

Sexually, my erections have remained unimproved, never firmer than 2 on a 0-10 scale, and my libido has waned, possibly because of (or causing) the depression. I also learned that my testosterone was quite low when tested in early November, but I have no baseline to know whether it had decreased or increased from previous months or years. For six weeks, I've been taking l-arginine in an effort to boost the effects of the PDE5 inhibitor (Cialis in my case), but have seen no effects. I have an appointment to start tri-mix injections later this month, and am cautiously optimistic.

My PSA has progressed thus:

4.6 in mid-September, four weeks after surgery.

4.5 in late September, one week after my diet reform.

4.4 in early October, after three weeks of new diet.

3.0 in early November, before starting clinical trial.

1.9 in early December by lab #1, four weeks into trial.

2.0 in late December by lab #2, seven weeks into trial.

 

UPDATED

May 2009

 

 

Continuing from February 2008, chronologically.

In May 2008, the clinical trial of Avastin + Tarceva ended, with inconclusive results -- my PSA had already started to diminish before I started the trial, but it never dropped below 1.6. From April through July 2008, I did a bit of doctor-shopping and treatment-shopping before reluctantly deciding on androgen deprivation therapy (ADT) and radiation at City of Hope, beginning in August with my first Lupron injection on August 7, along with daily Casodex pills.

Throughout September and the first half of October, I underwent radiation therapy. Because of the hormone therapy (presumably), my PSA sank from 0.4 in early September to 0.2 in mid-September, then to 0.1 in October. The second Lupron injection was on October 27; at this point my testosterone was down to 10.1 and I was sinking into a fairly deep depression despite weekly therapy and medication.

I took a disability leave from work that lasted until mid-November. My depression improved somewhat with a change in medication and, perhaps, more acceptance on my part.

In January 2009 my PSA finally went to undetectable levels, and I had my third Lupron injection on January 21. Two days later, I was laid off from work (along with several hundred others). A month after that I was at a new job, fortunately with benefits roughly as good as my previous one.

On April 22, 2009, I had my fourth and last Lupron injection, and my PSA continues to be undetectable while I'm on hormone suppression. I'm still moderately depressed, although functional, and I continue to take medication.

Overall, I feel dulled, and as if I've lost 30 IQ points compared to where I was before the clinical trial and subsequent ADT. My lifestyle has continued quite healthy, with no red meat, no dairy except cheese, and thrice-weekly vigorous exercise.

I'm looking forward to ending the Casodex in July and starting to get my testosterone back. With any luck, my next posting will report that I've pulled out of my depression, that my sexuality is restored, and that my PSA continues to be undetectable.

I'm cautiously optimistic about the future. .

Paul's e-mail address is: PaulC1956@yahoo.com

NOTE: Paul's PSA was taken initially at four weeks - very soon after his surgery. The normal time lapse is three months to enable the system to settle after the major trauma of the surgery. For an interesting discussion on this issue go to the Yana Forum.