THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

While working out of state, I went to a local urologist due to mild symptoms of restricted urination. I had been diagnosed 9 months earlier with an infected prostate and feared the infection may be returning.

The doctor did a DRE and said the prostate felt a little hard (perhaps scar tissue from the infection) but symmetric and no lumps. He decided to do a PSA test and when we got the results, he was astonished that it was 98.8 ng/ml. The test was repeated with similar results and I was referred to a urologist in my home state for a biopsy which was done on Aug 6 '07.

The biopsy came back positive with 4+3=7 on both sides and 80-85% tissue involvement. The ultrasound showed that the prostate is double the normal size. The urologist says the enlargement may be due to the tumor, but could also be due to BPH (Benign Prostate Hyperplasia).

The biopsy was followed up with a bone scan and a cat scan. Both came back clear. The CAT scan showed no extracapsular tumor.

The urologist said the clinical stage was T2. However, he felt that the high PSA and the grade of the tumor made it probable that the cancer had already escaped the prostate at a microscopic level. In such a case it would not be visible to the scans. He did not think surgery was my best option and referred me to a radiation oncologist. The game plan was for IMRT (Intensity-Modulated Radiation Therapy) plus ADT (Androgen Deprivation Therapy).+ hormone therapy. I began five days of Casodex to be followed by a four month shot of Lupron.

I thought that a PET scan might be helpful, the urologist agreed and he ordered it. The PET also came back clear. He seemed encouraged by the result and was willing to reconsider the surgery if I wanted it. I told him I would have a meeting with the radiologist and let him know my decision.

In the interim, I consulted with the urologist that originally found the cancer. His advice is for a "multimodal" approach. Do the surgery, then do follow up therapy such as radiation, chemo, and hormone as time and the situation dictate.

I had my first consultation with the radiation oncologist in early September, and he makes a very convincing case. He is not comfortable with the idea of a radical prostatectomy if the cancer is locally advanced. He says there is no justification for surgery if it must be followed with radiation treatment anyway. He says it will only make the side effects of the radiation more difficult. I have researched IMRT and it seems to be a very impressive technology. The radiologist thought the PET wasn't helpful and wants me to have an MRI to verify whether or not the cancer has spread locally. If so, he hopes my reluctance to abandon surgery will fade away and I can choose radiation therapy with confidence and without future regret.

I am now facing the most difficult and consequential decision of my life. It is maddening that virtually everyone in and out of the medical community puts a different spin on it. The is no consensus at all and I can find research and opinions to support or oppose any path you care to name.

I need to be on hormone therapy for two months before radiation can begin. Therefore, I can take a little more time deciding what to do. I will see what the MRI reveals, reflect on it and make a decision.

I'll post updates later.

Hello all, Well it's been 2 months now since the diagnosis.

Started Lupron at the end of August and have been on it seven weeks now. Hormone therapy hasn't been too bad so far. I get a little overheated and sweaty from time to time but nothing I can't tolerate. Started getting headaches about a week ago but I don't know if it's related.

I spent much of the last two months doing research, having tests and consultations to try to figure out the best treatment for my particular situation. An MRI last month that showed some "enlarged pelvic nodes" the largest measuring 2.0 x .9 cm. I don't see that as cause for panic as that barely meets the criteria for nodal enlargement. Without pathology it really doesn't mean much. It also showed that the tumor was growing near the base of the seminal vesicles but could not tell if they were involved yet. Capsule of the prostate was intact.

After weighing all considerations, I decided to go with IMRT (Intensity-Modulated Radiation Therapy) + Hormone Therapy. In view of my high PSA, I felt that I need a local treatment that would address the entire pelvic region. The radiologist will target the prostate, seminal vesicles, lymph nodes and prostate bed which is pretty comprehensive. My urologist implanted seed markers this week (non radioactive). The markers will allow the radiologist to calibrate and align the radiation beams from session to session. Good news is that ultrasound showed my prostate has shrunk considerably. It was twice normal size at diagnosis and is now about normal.

Treatment begins at the end of October and should be complete at the end of the year. After that I guess I will live from one PSA test to another and hope for the best.

Well it's finally over. This past Tuesday (Feb 5) saw the end of 45 IMRT treatments.

The first 25 was "Whole Pelvic" which broadened the radiation fields to encompass the lymph nodes. These 25 treatments had a dosage of 4500 cGy which the oncologist says is sufficient to destroy any micrometastasis in the nodes or surrounding tissue. The remaining 20 treatments were a 3600 cGy boost directly to the prostate and the base of the seminal vesicles. Total dosage was 8100 cGy. That's quite a substantial dose for external radiation.

For those that may be facing radiation therapy and want to know what to expect, let me break down my experience this way.

Hormone therapy resulted in a noticable loss of muscle mass, totally eliminated my sex drive and produced mild hot flashes. I also put on 10 lbs over the last 5 months.

As for the radiation, it did make my pre-existing urinary symptoms worse. After the first 10 treatments I had to double up on Flomax and even that was barely sufficient. After about three weeks, frequency and urgency were added to the flow issues. There was some mild irritation of the rectum that resulted in more frequent bowel movements, but that was about it. Never had any pain, diarrhea or bleeding.

These are all effects I could have done without, but I have been able to cope with them. Throughout the therapy, I have still been able to do anything I want physically, including sports. The bottom line is that if all this leads to a cure, it will have been well worth it.

When I first met my Radiation Oncologist, I asked him about my prognosis (mainly overall survival). His response was: 5 years, 100%; 10 years, 70%. At the time I saw that as pretty good news. After all, I was a high risk patient. It isn't every day someone finds out their PSA is higher than their temperature. However, after getting the results of my MRI, he basically cut those estimates in half. That really shook me. As a result, I haven't allowed myself to look upon my treatment as anything more than management. If my chance for a cure was a long shot, I did not want to set myself up for dissapointment. When I recently expressed those sentiments, he replied that my chances were not as bad as I seem to think. He said he wouldn't subject me to the rigors of the treatment if he didn't think he could cure me.

I now feel like I have gotten "mixed signals". I just don't what to make of it. I guess time will tell.

First post-treatment PSA will come in three months. We'll see what happens.

Tony USA

My last update was February so I thought I might post a few lines.

On Feb 26th I got my first PSA since I was diagnosed. The docs said they would wait until at least three months after the radiation therapy to take my PSA. It takes time for a tumor to recede after RT and any earlier reading wouldn't mean much.

However, I came down with the Flu just 3 weeks after treatment and had to go to the local clinic. They wanted a blood test and since they were going to stick my anyway, I had them run PSA and testosterone levels.

The PSA came back at 0.84 and Testosterone was 11.08. That was 9 weeks ago and I have every reason to believe it will continue to fall. I will check it again in a month when I see the Oncologist.

The first week in May marked 8 months on Lupron and it was time for another injection. I changed Urologists and the new guy recommended a 1 year implant called Vantas. When it wears off he says we may go to intermittent HT. We'll see.

Hope everyone has a great summer.

Tony - USA

Well, last week marked one year since beginning hormone therapy and this week makes 7 months since the completion of IMRT. Now that I have reached this milestone I suppose it's time for an update.

My work has taken me to a new city and therefore, a new urologist. My bloodwork last week showed my PSA has now dropped down to 0.1 Considering that I was above 102 this time last year, this is tremendous news for me. I wasn't sure it would ever get that low. I don't think it goes much lower before becoming undetectable. I only hope I can maintain it. If it stays this low for another 9 months, I think I can finally take much needed break from the HT and go intermittent.

I haven't really had much trouble or side effects from my treatment other than the classic symptoms of testosterone deprivation. No symptoms linger from the radiation and I have improved to the point that I only need to take Flomax about once a week just to loosen things up. I hope to be off Flomax completely by the end of the year.

At this point I'd have to say the results of my treatments are good and my outlook is guardedly optimistic.

Best wishes to all.

Tony - USA

I just thought I'd drop a quick update before the new year.

It's hard to believe a year has gone by, but this time last year I was in the middle of 45 IMRT treatments. At that time, 2 Flomax per day was barely keeping the pipes open. Now a year later, my last PSA is down to .05 and I have been completely off Flomax for about 3 months now.

I can't really report much as far as side effects or problems. I do tend to have a lot of muscle cramping and occasionally have sharp pains in my legs. I suspect the leg pain is related to having nerves in the groin irradiated. However, any difficulty is generally minor and soon passes.

I'm looking forward to May. That will mark 20 months on hormone therapy. If my PSA is still stable, I may get to go off it for a while. That would be a welcome change.

Best wishes to all.

Tony - USA

It's been a while since I have submitted an update so I guess I'll chime in.

I met with my urologist about a month ago as it was time for the Vantas implant to be removed. For those of you that are not familiar, it is a capsule that is implanted under the skin and contains a one year supply of a drug similar to Lupron. The implant had been used up and my PSA continues to be below 0.1.

My urologist agreed that since I had maintained my PSA at such a low level for almost a year, I could go intermittent and come off the drugs for a while. It will be wonderful to give my body a break after 21 months of testosterone deprivation. I will continue to receive regular blood tests and I am hopeful that the PSA will continue to be stable for a good long time. If the PSA starts to rise, then it's back on the drugs immediately. The uro says that the low PSA over the last year is an indication that the bulk of the disease has been irradicated, although there may be some dormant PCa cells still floating around in my system.

It has been almost two years since diagnosis and 16 months post-radiation. I can't believe it has gone by so fast. So far I couldn't have asked for a better result. I dare not allow myself to think that I am cured, but it seems clear that, for the moment, the disease has been pushed back. Getting your test results is always nerve-racking but the next one will be doubly so after my first three months off treatment. Will it stay low? Could I be that lucky? We'll see.

All the best, Tony - USA

Just a few quick lines to bring my story current.

I have been off all meds since early May. I just had my first PSA since discontinuing Hormone Therapy. While I was waiting for the results I was,...terrified. The urologist came in and announced the PSA was zero, or at least too low to be detectable. Testosterone was around 20.

So far, I couldn't ask for anything better.

Best wishes, Tony USA

Just a quick update for those that may be interested.

In February 2010 I had my latest check up with my urologist. Last blood work was back in August 09. I was astonished that the PSA is still undetectable. The doc says the lab equipment cannot detect anything below 0.04 It has now been below 0.1 for 1 1/2 years. The last 8 months it has been undetectable without any treatment. I really thought it would start to rise by now and tried to mentally prepare myself for that eventuality.

My PSA has done nothing but drop since the day I started treatment. I don't look forward to that trend changing. I expected some change and frankly, it has no where to go but up. Fortunately, I didn't have to face that. I don't want to jinx myself but my doc is now talking about future treatment in terms of years instead of months.

I like it.

Best wishes, Tony - USA

My case history on this site is getting quite long. However, I know from my emails that there are people that follow my case. Therefore, I would like to offer an update following my last check up.

I visited my Uro last week and discovered that my PSA was still at 0.0 This is the figure the lab gives when it is too low to be detected by their equipment. It has now been below 0.1 for more than two years. It was undetectable when I went off all meds 18 months ago and the good news continues. I am thrilled with this outcome but have discovered that I now have something more to concern myself with. [As a wag said at a support group meeting some years ago "A man with prostate cancer has no need of a hobby."]

My testosterone has not recovered at all despite the withdrawal of all meds 1 1/2 years ago. The blood test showed a level of 10 ng/ml which is about half of what it was 14 months ago. In fact, thats about the lowest reading ever. I'm sure someone would be tempted to ask, "If your PSA is staying so low, that's wonderful, why worry about "Low T"? Here's why.

It should be understood that Hormone Therapy drugs like Lupron do not directly affect PCa. What they do is lower your testosterone. It is the absence of testosterone that surpresses the cancer. When you go off the drugs, the testosterone is supposed to come back. Hopefully the PCa will not. Up until now I had evaluated my progress in the context of how long I have maintained a low PSA without any treatment. The problem is that even though I haven't had the meds, I am still experiencing hormone deprivation as if I were still on them. The whole idea of intermittent treatment was to give my body a break from the effect of low testosterone. My Uro told me that if and when my PSA started to rise he would put me back on the drugs.

Now I have to wonder: Will the testostorone ever come back? Am I now at greater risk for the PCa to go hormone refractory sooner? If the PSA starts to rise is there any point in resuming the drugs? What is there to gain? [These are all questions upon which there is considerable debate, many theories and no definite answers. Some men have used Testosterone supplements to raise their levels without any apparent ill effects, although this is regarded as unwise in most quarters. One thing that has to be remembered is that there are four main 'classes' of ADT drugs. The drugs used often have different names in different countries, but the most common ones are: Lupron (leuprolide acetate), Trelstar (triptorelin pamoate), Zoladex (goserelin acetate) and Casodex (bicalutamide) All act in different ways, so even if one fails, another may work.]

When the Uro's office called with the result of the testosterone test, the lady told me I had low T and I would need treatment....she is clueless. I asked to have my Uro call me. The same lady called me back and told me the doctor says not to worry about it. My reading was to be expected. Say What??? This from the same man that one and a half years ago took me off the drugs and told me I would start to feel much better when my "T" climbed back up to about 150.

I am so tired of fighting this disease when my only ally spends about three minutes a year thinking about my case. Two of those minutes are spent reading my chart.

Oh well, enough of the negative. Just had to get that off my chest. I'll just try to focus on the positive and hope it stays that way.

I just visited my urologist today. This month marks two years without meds. The result was: PSA remains undetectable.

My testosterone has climbed from 10 at my last checkup to 23.1. This is good news because it keeps me from having to make a difficult decision. I can really feel the effects of long term "T" deprivation, but I can cope with it if it doesn't go lower. Before the results were known, I told the doc that if the testosterone dropped below 5, I wanted to consider testosterone replacement therapy. To my surprise, he gave me no argument. In fact he said he had recently seen a report suggesting that hormone replacement was not seen as especially risky in men that had finished their primary treatment (Controversial for sure). Untreated men would obviously want to avoid this.

Considering my very high initial PSA I couldn't have asked for a better outcome to the primary treatment. Frankly, I don't want to rock the boat. I would do this only as a last resort. The doc said he would give me a lotion but would not care to do an injection. The idea being that we don't want the testosterone to spike. We would want to raise it slowly to some point between castrate level and the low end of normal. If the PSA starts to move up, the replacement therapy ends.

Glad I don't have to make that decision right now. I'll just keep watching and see if it continues to rise on it's own. Like I said,.... Don't Rock the Boat.

Tony USA

Well, I guess its time for another quick update.

In a matter of a few days it will be 4 years since my last radiation treatment. My last PSA test was for all intents, still undetectable, at least by the previous doctors standards. My uro had the equipment to test in his office but could not detect anything below 0.04

The last test (in November) was done by a lab that reported results down to three decimal places. The reading was 0.006 I'll take it. Unfortunatly the testosterone took another dip and is down to about 9.0 Oh well. Can't have everything. I'll check back in later in the year.

I haven't posted in quite a while because there was really nothing new to report.

In July it will have been 6 years since my original diagnosis. It has been more than 5 yrs since completing radiation and 4 since the end of all meds. Time marches on.

I am due for my regular 6 month check up so my last blood test was back in Dec. However, at that time my PSA was still undetectable. Further, my testosterone had come all the way up to 75. That's huge for me because in spite of the absence of any drugs, my "T" level showed no signs of recovery for several years.

Now I am hoping the the testosterone comes back at least to the low end of normal and the PSA stays where it is. If so I'm sure the rising T will benefit me.

I hate the last weeks before a bloodtest. My anxiety always rises until I know where I stand. So far the news couldn't be better. Here's hoping that doesn't change.

Tls

I haven't posted an update lately so there are some new developments. My testosterone came all the way up to 75 then bottomed out again at 9. At that point I had enough. I talked to my Dr and we agreed to use testosterone replacement to raise it artificially.

Testosterone replacement is very controversial for Prostate Cancer patients. However, the plan had always been to do intermittent hormone therapy. That means suspend the hormone therapy and let the "T" rise naturally. When/if the PSA starts to rise to a certain threshold, resume the hormone therapy to bring the "T" (and the PSA) back down. That way your body gets a break from the rigors of long term testosterone deprivation. I'm my case the hormone drugs were withdrawn but after 4 years, the "T" never really came back to anything approaching normal. The doctors said this was unexpected but can happen.

Since my "T" level never recovered naturally, and my PSA has been stable and undetectable for 6 years, it was felt that a low dosage of Androgel was an acceptable risk. I started the androgen therapy at 1/4 the normal dosage. After 5 months my T level was floating around 200 and the PSA is was still undetectable. We are keeping a close watch on it and I am getting tested every 2-3 months now. Next test in about a week.

200 is still below normal for a man my age but,....

I have been going to the gym regularly for more than a year now and working with a personal trainer for about a month. I lost a lot of muscle mass during the hormone therapy and got pretty weak. However, I am happy to report that the strength training has paid off and I am now stronger than I have ever been. On the advice of my trainer, I have modified my diet toward high protein/low carb. I feel absolutely great and I'm steadily losing weight.

This is a happy story to be sure, but not over. This disease could still come back with a vengance. I decided to be proactive because even if I did nothing, there is no guarantee there wouldn't be a reoccurrence anyway. I made a conscious decision that I refuse to be a victim and to take my life back. No regrets here. Anybody want to arm wrestle?

Good luck,
Tony

Tony's e-mail address is: tonyshores AT charter.net (replace "AT" with "@") (but this e-mail address may no longer be valid)

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