Just had the RALP, and now the pathology report. My pathology stage is pT3a NO. I am a bit concerned that it had already escaped the capsule. I'll have my first post RP PSA in about a month.

The catheter came out today and I have already peed 3 times. Somehow something taken for granted before is a cause to celebrate! Leaking has been not bad so far. We'll see if that continues.

From my reading it looks like with pT3a, my 5 year survival rate is around 80%. I was hoping for something in the 90%s. [Not sure where John gets this information. It seems from the Memorial Sloan-Kettering Calculator that his Progression Free probability is 95% at 10 years.]

Its been almost 15 months since I wrote that initial entry. Basically, I am doing well. I've been having ultra sensitive PSA done about every 6 weeks and although I had one reading right at .01, my doc thinks that was a false reading. ( I have had two Less than .01 since then). No urinary problems whatsoever. I have changed my diet to a vegan type diet plus cold water wild fish ( salmon, tuna, sardines )basically - very little dairy, mostly fruits, vegetables. My weight has dropped from 220 lbs to 178lbs. My friends say I have lost too much weight, however, many say I look great! I swim every day in a new pool.

Now the difficult part. I put myself on a penile rehab program that I saw on a video on the internet, with my urologist's cooperation. 25 mg viagra 5 x a week, and two trimex injections per week to keep my penis getting blood. plus daily vacuum pump. I did all this religiously for about 5 months, then dropped off the vacuum pump. ( the pump engorges venous blood - which apparently has less oxygen, than arterial blood). And though the injections really weren't difficult to do, - I had just two times I hit a blood vessel, and I liked the ability to have an orgasm with an erection, it made me feel normal after feeling so abnormal for so long, eventually, I noticed a change in my penis. It was a narrowing in the shaft midway. My urologist said it was mild Peyronies disease. I have stopped the injections. The good news is that I can have an erection without any drug. My penis is not as 'pretty' as before due to the peroynies - and I wish I had been more aware of that possible side-effect.

Also, I go to a really top -notch support group one time a month. The men in the group are facing much more serious conditions than I but we accept each other with where in this journey each one of us is, currently. ANyway, most of us are taking rosemary and sweet potato leaves with good results. The rate of PCa in the Mediterranean area and Asia is much lower and there is some research to suggest that it is the carnisol in the rosemary and I forget the substance in the sweet potatoe leaves ( often can be found in Asian food markets - if you don't grow your own) that are the reason for the lower rate in those populations.

Hope this update helps someone!

Though I ended up being staged T3a (the cancer had just begun to spread outside the capsule), the surgery had negative margins. It has been 27 months post surgery. I have a hyper sensitive PSA test monthly and the last 5 months have been below detectable limits. I have changed my diet to pescitarian (fish, fruit and veggies) - little dairy, no meats including chicken). I have lost 40 lbs - I'm 6'4" and weigh 175 lbs. I work out with resistance weights several times a week. I had no urinary incontinence from the time the catheter was removed. I put myself on a penile rehab after surgery - including about 6 months of injections 2 x a week. - overall ED issues are very minor, but girth has been reduced.

I appreciate life quite a bit more and my sense of priorities have been clarified by having cancer. I am now 59.

Well, I think I probably have a recurrence. 5 out of my last 6 monthly PSA's have been above detectable limits. The latest one was 0.022 which is still below the 'offical' biological recurrence, but now with hyper-sensitive testing it is possible to track a recurrence earlier. OR it could be left over prostatic tissue - but I think that is unlikely. At this point I am interested in determining the PSA; doubling time to see if my Gleason 6 is acting aggressively which I hear sometimes happen.

I am not on avodart, but I do take a combo of food powders and extracts including: rosemary, ginger, green tea, broccoli powder, and dehydrated sweet potato greens. This is a strategy of 'tumor growth arrest'. In a way, it makes it harder to determine the aggressiveness of the cancer, but I am conflicted about just letting the potential cancer grow so I take the powders every day.

I continue going to the support group and feel that I learn each time I go as well as have developed a sense of community of caring folks. Overall, I feel good and the journey continues!

After seeing Dr. Meyers, I have been put on a 'growth arrest program'. - which includes Avodart and 2000 mg metformin. It has been 2.5 months PSA went down twice, then went up slightly. My dhT is still not below 5 and Dr. Meyers says we'll need 6 months to see if this approach will work for me.

Though I was a gleason 6, he says my cancer is acting like a 3+4.

We'll just have to see.

I have been on a 'growth arrest' program, designed to reduce dHT to below 5, in an effort to slow Pca progression. I take 4 avodart, one finasteride, 2000mg metaformin, vitamin D, Viagra, and cabergoine (this one only 2 times a week). My dHT has stayed below 5, but my PSA is still increasing. I get tested every month. So, things are not ideal, and I am still working with Dr. Meyers to see if we can get that PSA to stabilize at the least.

After my recurrence, I have taken a medication approach. I also have had the deciphr genetic test, which indicated that I have PTEN loss. My doctor is retiring so I will see a new med onc Nov 1. My PSA is doubling every 12 months.

Well, alot has changed since my earlier entry. I had my pathology slide reviewed by Jonathan Epstein at John Hopkins and it turns out my Gleason really is 3 + 4 with 10% cribiform pattern (so Dr. Meyers was correct in his assessment of my cancer's behavior!). I started taking propranolol and my PSA started to go down for about 5 months, but then an emotional crisis, it jumped to 0.221 which made me eligible for the Gallium 68 scan at UCLA. One 'node' was discovered near the rectum and bladder. So I was now able to get Zitiga along with prednisone, Firmigon, Avodart. The plan is to take this blockaide for 6 months. After two months, I'll go down to Sarasota to the Dattoli Clinic for more imaging and probably 39 sessions of External beam Radiation of the prostate bed. After I return, I'll finish up the last two months of ADT. I am also self-injection with Leukine (but not during the radiation) to try to boost my immune system. Moving to Sarasota (with my two dogs) for 2.5 months may seem like alot of trouble, but I am trying to look at this as an adventure, and of course the weather will be great. I am treating myself to a very nice home on Longboat Key. My overall thoughts are that this may be my last chance to take an aggressive approach while my cancer load is relatively low.

My testosterone is increasing but still sub normal. PSA remains undetectable using Labcorp. I remain on Metforim but no longer on avodart, nor cabergoline. I feel great. I hated the feeling on adt. I developed some gynecomastia as I had more estrogen than androgens while on adt. I considered surgery, but tried tamoxifen for 5 weeks with good results. I am working out 7 days a week now. My progression free odds are 66% for 10 years. I am cautiously optimistic and trying to focus on enjoying my life rather than the cancer.

Things are going well. My testosterone has returned and put is still undetectable now for 36 months. No urininary incontinence. I use trimix 2 x a week. It works well about 70 % of the time. I just try to enjoy life.

I have been released by my retiring MOnc. He said I have only a 1/2 of 1% chance of any more problems with pca. We stopped metformin and vit D. I ended my 12 year participation in my support group. I am getting used to the idea that maybe I have actually beat the disease.

Doing well. I feel I am in a 'surviorship' mode now. 6 years post salvage radiation and adt with zitiga/ firmagon. PSA is undetectable. My diet has changed to low carb. I walk and lift weights.

John's e-mail address is: archtrees AT aol.com (replace "AT" with "@")