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

In 2005, at age 45, I was suffering from a prostate infection and went to a Urologist for treatment. I was treated successfully with an anti-biotic. I had my PSA taken and had a score of 6.3. I had a six core biopsy taken throughout the prostate and no cancer was found.

At the time I didn't know anything about PSA and didn't know that my score of 6.3 was rather alarming. I was not directed like I should have been towards frequently retesting my PSA and never bothered, being told there was probably nothing to worry about.

I wish I knew what I know now.

Six years later, in October, 2011, I was again suffering from a prostate infection and went back to the Urologist for treatment.

My PSA was taken and I was found to have a PSA of 67.

A twelve core biopsy revealed 4+3=7 Gleason score with 80% involvement. (Of note, if I had a twelve core Biopsy taken in 2005 my cancer may well have been found.)

A Prostascint scan, Cat scan and MRI revealed Seminal vesicle involvement but no bone or other metastasis.

After considering many options and reading much material I opted for a treatment plan which appeared to be the best for me, radiation with ADT (Androgen Deprivation Therapy). Reading through statistics of radiation and high risk disease in a book by Dr. Datolli, radiation appeared to offer a better cure rate (I believe 70-80%) in my situation as apposed to a lesser rate with surgery.

My cancer is (or hopefully was..) considered High Risk, Advanced Disease and I immediately started ADT after being diagnosed. I was originally on Firmagon (Degarelix) for five months then switched to Lupron. By the way. "Firm-a-gone". Is this a cruel joke? :o)

In February, 2012 I had Brachytherapy (Palladium seeds) implanted in my prostate. I opted to wait a bit longer (four months) than recommended before having my Brachytherapy treatment. My thinking was that the longer I was on ADT prior to treatment, the more my prostate would shrink. The smaller the target, the less radiation was needed and with better comprehensive radiation coverage. I had 55 pellets inserted. They are in me for life but by now near dead of radioactivity.

Finishing in June, 2011, IMRT radiation was applied daily for five weeks (not including weekends). IMRT was applied throughout my prostate, my cancerous seminal vesicle and also applied to lymph nodes susceptible to disease progression. Each IMRT treatment was performed with a "rectal balloon". This was not pleasant but did supposedly offer protection of the bladder and other organs from unwanted radiation exposure.

After finishing radiation, a countdown of 18 months more months of ADT started. It has recently been found that 18 months of ADT after radiation offers the same curative / longer remission benefit as longer periods of ADT after radiation. I had my last Lupron shot four months ago and they last four months.

I guess I will be gaining some testosterone back soon. After this last shot of Lupron four months ago, I have not been interested in sex of any kind and have not had one erection. Prior to the last injection I was able to have very occasional, perhaps once a month or once every two months erections and marginal quality sex. An erection would often be a bit painful and not exactly easy to maintain. Nothing though for the last four months. I have to say that in an odd way, though I am truly sick of hot flashes and I look forward to being more hormonally stable, I have not missed sex or the presence of testosterone like I thought I would. Being "chemically castrated" is like being more of a pre-adolescent in some ways. Pre-teen, pre-sex hormonal. I often feel like I am ten years old again and sort of appreciate being free of the slave holding powers of sex hormones and how idiotic they make people behave. Remember being ten and how dumb and serious adults looked at times? We were right. Give me a good fart or turd joke now and I will laugh for hours. I hope I still can in a few months.

I have been on Effexor (150MG), an anti-depressant, to control hot flashes. Effexor offers me around 50% relief. Maybe a higher dose would be more effective but I didn't want to go higher than 150mg.

Another issue I have had to deal with is that I have Osteoporosis. Its odd to be a guy and have Osteoporosis but I do. As ADT often compromises bone, it is an issue of great concern for me. I have been taking Fosamax on and off. Losing bone density is no fun but the controversial side effects of these types of drugs is also sobering.

After full radiation of your prostate or a complete prostatectomy, you have no prostate left. The prostate makes seminal fluid or "giz". Dry orgasms (nothing comes out) take a bit of getting used to. If you never heard that, its weird news I know, but hang in there.

I never had issue with incontinence. I did have some burning during urination around one year after radiation but it didn't last more than a month or so.

When I was first diagnosed I WAS DEVASTATED. If you are newly diagnosed perhaps you are devastated as well. Hang in there. I am happy and I think I have a good shot at being cured. If I am not cured I am convinced I will still live a long time. I am NOT freaked out by any means. New treatments and science are evolving at rapid pace. If you are newly diagnosed, try to be happy being alive in this era of medical progress. I have to say I have learned much about living a better life after being diagnosed. Life is short, life is precious, even if we all live to 100, I hope we all never forget to live while we are alive.

My last PSA was .2. Previous to that, one year ago it was 0. Six months ago it was .1, then three months ago it was .3. I was glad to see it fall after that small progression. My Radiologist predicted this.

I was told that after a prostatectomy, a PSA occurrence of .2 or more suggests disease re-occurrence. After radiation therapy it is impossible to truly set such a standard as each person is left with differing amounts of healthy prostate tissue which produces PSA. I have heard a PSA of 2 or 3 being used as a rough threshold.

In that I had very aggressive radiation therapy due to my initial 80 percent involvement and have little or no healthy prostate tissue left, I would naturally be considered in a state of re-occurrence at lower PSA values. So, what PSA value I should be scared of is unclear but so far, so good.

Osteoporosis....

My last bone density scan showed that I now have osteoporosis with a current t-score of -3.2. Previous to hormone therapy I had a t-score of -2.7. I experienced bone loss due to malnutrition earlier in my life due to a long term bout of Giardia which went undiagnosed for almost ten years.

During hormone treatment (Firmagon, then Lupron) I was prescribed Fosamax which I took only sparingly, being spooked by the negative side effects that come with bisphosphonates.

Do I wish I was more attentive to taking the Fosamax? I don't know. Probably. The bone it creates is suspect it seems, yet here I am with osteoporosis. I do believe I wish I was on a low dose estrogen patch perhaps as I have read this practice being done by some prostate cancer specialists. Testosterone converts to estrogen which protects bone loss. So, no testosterone, no estrogen and we have bone loss during ADT (Androgen Deprivation Therapy).

I loaded up on calcium and supplements, hoping to keep bone decline at bay, but it didn't really work. After doing much reading and attending some health message boards I have learned not to expect too much from supplements when it comes to repairing a bad t-score, painful as that is to acknowledge. There appears to be more of a trend towards using supplements, diet and excerize to "reduce fracture risk". Even though your T-score can remain relatively unchanged the theory is you can reduce your fracture risk by making your existing bone less likely to fracture.

A T-score of -3.2 is not good for a guy of 54 years old and I am now on Forteo, a daily injectable drug for one year. Forteo is a parathyroid hormone which basically encourages the growth of bone. As I understand it, our bones are always eroding and regenerating. Forteo I believe stems the eroding side of the equation. I do have some side effects from the Forteo. A little cognitive confusion, some aching bones and some fatigue. I am cycling off treatment for one week after two months intervals.

Forteo is linked to osteocarcinoma at high level exposure in rats. It is not recommended to people who had radiation to their bones. I am on the fence whether I should really be on this drug, yet documented cancer cases linked to Forteo are very sparse. I think maybe only one or two over the last ten years or so.

Erections....

My radiologist did a good job and I still get erections. Not as impressive as before treatment and maybe not as frequent nor as long lasting but erections none the less. No need for Viagra yet, though I can see the need maybe coming down the road in the future.

Michael's e-mail address is: michael AT southeastpathology.com (replace "AT" with "@")

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