My new Urologist is waiting for the pathology results.

Until he gets them, there is nothing to do. He pointedly mentioned that sometimes his pathologist does not even agree it is cancer.

That may be, but the recommended procedure is that if the free PSA is less than 10 or 12%, and biopsy did not find cancer, then do it again. To me there is the strong implication that they just somehow missed it, so do it again. I am not terrified of another biopsy, but I don't look forward to it either. My free PSA is less than 5%. From the free PSA graph, it does not look good.

The pathology info needs to be examined by my own Urologist's Pathologist.

I think the important info is two pieces.

One piece is the photo-micrographs of the stained prostate cells from the biopsies. There is a lot of information there. Only the originals will do.

As part of the initial evaluation, I had a CT scan done. There was some calcification in it. One can over-weight this information - the prosatate is not a breast. Calcifications are very common in prostate specimens. They seem to be associated with benign prostate growth. Calcifications can occur in direct association with prostate cancers, but the direct correspondence is not as clear. This association is not as high as in breast cancer.

Until the Pathologist gets the pathology photographs and images, there is no diagnosis. My Urologist has no recommendation until he sees it.

Nothing is going on, until he has the Pathology report in hand.

It ain't over until the Pathologist sings, or something like that.

Joe:

Welcome to the board. I'm an infrequent poster, but have been coming out here for years.

I don't consider myself knowledgeable on prostate-related issues. There seem to be some folks here who at least claim to know a lot about that area, so I'll leave you in their hands with, of course, the caveat that you should check out any advice you get with a physician.

I do, however, feel that I know something about living without testicles and about HRT (Hormone Replacement Therapy, if you're not fully into the "jargon"). I don't have a view on whether a bi-lateral orichectomy is a necessary consequence of your own condition, but since we're talking about potentially life-and-death stuff here, I'll leave that to oncologists and urologists.

Assuming that you do need to have both of your testicles removed and assuming that you want to continue having a normal libido, normal sexual function and normal male secondary sex characteristics, here is what I think. But, as with my comments on seeking medical advice above, I do note that I am not a Physician and that you should check out anything I suggest with a board-certified endocrinologist.

You need to separate in your mind HRT from whatever impairment to sexual function may (or may not) result from your prostetectomy. HRT will address your libido, sex drive, chemical balances, secondary sex characteristics and how you "feel." It won't manage your "plumbing," which is a matter you should discuss with your urologist. Think of the testosterone as the "fuel" and the plumbing as the "engine." You need both, but they are quite different.

So, my first advice is for you to establish a relationship with a good endocrinologist. I would do this before any surgery so you can be sure you get along with him or her. The doc should be someone with whom you are comfortable and who you feel will be willing to work with you to "get it right" through what might be some trial and error when it comes to HRT, which might take a few months. If you don't like the doctor or if you can't talk with him, find another one.

What can you expect?

A lot of this depends on your own physiology and body chemistry. It would be a very good idea to get your Testosterone levels before the surgery, so you'll know what makes you "feel like you" today.

There will be a good deal of residual testicular testosterone in your system for some time after the procedure. In addition other parts of your endocrine system will continue to produce some testosterone on their own, even without testicles, but not enough to sustain anything near "normal" levels. Non testicular testosterone will, over time without testicles, most likely give you a level of below 50. Using the common measurement employed in the US, the reference range for testosterone is 300 or so to around 1,300 depending on your age. Your endo will also talk to you about "free" testosterone and explain to you the volatility in any testosterone measurement but I don't want this to get too long. Where you want to end up will be, to some degree, a matter of where you are today. If your natural levels are in the low normal range (below 500), your reactions and needs might be different than if your natural levels are around 1,000. So get a doctor who gives a shit and who will listen to what you want and need.

So, you will start some form of testosterone therapy that will take into account the residual but declining levels of testosterone in your system. There are many resources on the internet that discuss these alternatives in depth and detail. Here is a very brief summary of my own experience.

Pills are relatively ineffective and generally not used at all any more, if for no other reason than the potential liver problems they might cause. I doubt very much that your doctor will suggest them.

The patch has fallen into disfavor because it can fall off, leave a rash and otherwise be cumbersome to use, so I doubt s/he will go that way either.

My guess is that your doctor will initially steer you in the direction of a gel or maybe a cream. The big advantage of these is that they release a constant level of the hormone into your system. They are also easy to apply. Their downside is that if your body is producing no testicular testosterone, you will need to use a lot to get your levels into the mid normal range if that is where you want to end up. Many people who use them do not have hypogonadism and indeed have functioning testes that just aren't generating enough testosterone, for whatever reason. But, this is a very good alternative. The gel especially is an expensive option, but most insurance programs should cover it.

The other major option is a regular intramuscular injection. The advantage of this therapy is that it only has to be done once a week or every two weeks (for hypogondal males, it's unlikely--but not impossible--that an injection every three weeks will be adequate). The major disadvantage is that it is tougher to get a constant level of the hormone in your system, since the level tends to spike in the 48 hours after the injection and then gradually reduce over the next few days. So, the levels have to be monitored carefully at the beginning to be sure that the nadir for the day or so before the next injection isn't too low. If you need injections every week or every two weeks, it can be impractical to show up at your doctor's office to get them, so it's best if you can do them yourself. However, many people are squeamish about doing this. Some also find it to be a negative, psychological factor to be getting what drives their "manhood" by having what is most often a female nurse give them a shot in the butt. But, everyone is different in this regard. This is also a relatively inexpensive option.

The bottom line is that you will do what "feels" best to you.

I hope this has been helpful, as it has certainly been long.

As we await word from our host, Joe, Robotic -assisted prostatectomy has been added to the list of three surgical options recommended by the National Compreshensive Cancer Network . . . minimally invasive . . compared to open and laparoscopic surgery, and it is associated with faster recovery and less pain compared with the other two procedures.

Joe, the longer you wait the better things get. Hopefully, your new Urologist will say keep in touch with us once a year once he has all the facts from your strangely defective previous urologist.

Presumably you have also joined one or more real world or internet world cancer survivor help groups. Talking with others who are / have been in the same predicament is just as vital as medical treatment.

My dad lost his prostrate and both balls to cancer, and had to endure a lot of pain from radiation prior to that. While that got him down it wasn't what did him in. It was his heart, from years of not watching his diet. Moral of the story: There is more to life than gonads so don't ignore other health risk behavior.

You must feel like one with your Dr. If not, you must get a new one who supports your wants, needs, wishes,desires 100% and doesnt' treat you like just another manila folder full of money making treatments that is the Dr.'s ticket to a new Corvette.

On the positive side, while cancer may kick you in the balls and prostrate and send them over the goal post with diminished testosterone you won't really care about sex or about not being able to engage in sex. And you won't even mind that you don't mind. You won't be looking at anyone else as a sex partner so your spouse will have no reason to get jealous. Since having sex is pretty much, mostly, going to be a thing of the past, your spouse too needs to join help groups to see how other spouses have dealt with this. Don't understimate the benefits of hugging, cuddling, kissing, even it if doesn't lead to foreplay or sexual activity. You just never know about some things. Some women are surprised to discover they really enjoy feeling out a man with out balls and they can frolic in bed with a castrated man and masterbate themselves and get along quite well. For people use to "normal" sex, such things may not ever be thought of, or if thought of, never spoken of. Screw normal. Branch out and discover new ways to make every day a good day. Good days don't happen automatically. You really have to make them happen. Little good comes form lying back and thinking "woe is me".

Finally, last Thursday, my new pathologist received the prints from my biopsies.

The lab has not yet completed their analysis.

My new doc is out of town until Wednesday.

Still, I am more comfortable than I was before.

I have decided to go ahead with the Surgery.

I scheduled it a month ago.

I have no qualms about calling it off at the last minute.

I have made decisions like that before and have not had problems with them.

Surgery is scheduled for Thursday morning, and I have to be there at 5 AM.

I called my new Urologist's office last Friday morning.

I was concerned. Without the Pathologist's report, I had no clear diagnosis, and no clear plan.

I explained my concerns to the secretary and she said she would see if she could get the doctor to call me.

Fifteen minutes later, he was on the phone. Never a bit rushed. He seemed ready to take as long as I wanted.

My understanding of the protocol was what my first Urologist said he was going to do. That he would first biopsy the lymph nodes, then if the lab found they contained cancer cells, he would end the surgery without removing the prostate.

That makes zero sense to me. By the time he touches the first lymph node with an instrument, I have already taken 100% of the risk - the risk associated with the anesthetic, the infection risk with Surgery, the infection risk associated with being in a hospital, the risk of uncontrollable internal bleeding. To stop then, means that I go home, and later, after the cancer is worse, they might decide to go back in and take out the prostate, and take all the same risks all over again.

My new Urologist has a different protocol that is exactly opposite. He will take some of the lymph nodes. The Pathologist will look at them the next week after that. No matter what the condition of the lymph nodes, the Prostate is coming out.

The new doc then said something that set me at ease. He said that if I wanted the other protocol, he would do it that way. How did I want it done?

Wow. My body, my consequences, my decision. What a concept.

I discussed a bilateral orchiectomy at the same time, with him.

Again, an open invitation to do more surgery, make a few more bucks, and he said he didn't want to.

He said the orchiectomy was entirely too radical and was totally unnecessary. He said I had a small cancer that was probably totally contained. I had caught it early. Of the patients he sees, I am definitely way down on the bottom end of severity. When he removes the prostate, he expects to totally remove the cancer. Nothing is guaranteed, so, of course, there will be follow-up for years. He expects me to be a long-term patient and wanted to have a good relationship. We will be checking PSA levels regularly from now on.

My wife finally made the comment that gelled my decision. My current medical insurance coverage under COBRA runs out in less than a year. If I don't have it done now, it won't get done. I cannot risk the small percentage of chance that what I have will progress to full blown metastatic cancer. She does not want to lose me.

I had a blood drawn for a blood test when I met my new Urologist.

My PSA from that blood test was 1.4. I don't know if a free PSA test was done or not.

I switched around work days, so I will be off Thursday through Sunday. He was quite willing to let me get back to work on Friday, if I felt like it. (I work from home.)

I have been telling family members, quietly. My daughter was very upset. I managed to get her settled down. The "C" word just sets people off.

About ten days ago, I went in for the pre-surgery. A couple of really cute med students dropped in and asked if I was willing to be a part of a study. Some of my prostate cancer cells would be taken as a sample and preserved for later evaluation. Long term, the study would be checking on outcomes versus procedures, and how outcomes related to the severity of the cancer itself.

That really tickled my sense of humor. Two foxy girls were having a conversation with me about a procedure. We all knew that it would result in my permanent, irrevocable sterilization, and possibly permanently end my sex life. We might as well have been talking about how the local baseball team was going to do in their next game.

As it turned out, they had to come back a couple of times. Somehow, I was just really, really cooperative. I don't know what came over me. I did manage not to laugh.

All the usual questions from the anesthesiologist. I get a little nauseous when flying in bumpy air, so I am one of "those" and he will adjust for it. Allergic to Penicillin, but many folks are, so no surprise. A nurse gave me details about what to do to get ready. Nothing by mouth but clear liquid on Wednesday, and nothing - no coffee, no meds, nothing - after midnight on Wednesday.

Gotta dig out the sweat pants. I will have a catheter for the first two weeks after Surgery. Sweat pants will hide the catheter and bag.

If I get time, I will post once more before Thursday.

Joe, the driving force is the Insurance, it appears. Because, with a PSA of 1.4, there is nothing wrong with you. The PSA should be over 4. and the Gleason score has to be over 7 to indicate some cancer is present. I'm surprised your new Dr. hasn't secured your Gleason score before proceeding and, in fact, supports surgery for a case as extremly Low Low risk as your situation appears to be. The surgery will result in things not being as they are now. Ever again. Surgery will change your male life style. Since there may be more to this than revealled, if you do have anything done, good luck with everything.

Good News. I survived.

I am not allowed to sit in this chair for long, so this will be short.

My Gleason score did not change.

The surgery was more serious than I expected. It was still abdominal surgery.

I had a robotic-laproscopic radical prostatectomy. Start to finish, the surgery took 4 hours.

They kept me in the hospital overnight, and practically speaking, there is no way I could have navigated my way home the day of the surgery, not even with my wife's help.

One incision is about three inches long. The other four incisions are between a half-inch and an inch long. A combination of staples and stitches are holding me together.

I am wearing a Foley catheter. It has a balloon on the top end that is inflated after insertion. The balloon mostly prevents it from falling out.

The whole catheter affair is a royal pain in the neck.

They had me up walking the day of the surgery. The next day, they wanted me to walk five times. We compromised. The first time, I went two laps instead of just one, and the second time, I did four laps instead of just one. One of the Residents gave me the strangest look the fourth time I went by. I just smiled and waved.

I found that the first twenty feet hurt. After that, I just felt better and better, until I started to run out of energy at the end of lap 4.

1:30 PM on the day after the surgery, they discharged me. I am now at home, and recovering.

Walking, within reason, and going up and down stairs, again within reason, is allowed.

I have been going downstairs and walking for ten minutes at a time. Gets my heart pumping, blood flowing in my legs, and I have to breath deeply. Clears the flim out of my lungs. Also keeps my digestive tracts in balance.

More later.

Good News. I survived.

Joe_Trotter (imported) wrote: Mon Aug 04, 2008 5:29 pm The whole catheter affair is a royal pain in the neck.

More later.

I am glad to read surgery and recovery is going well. Sounds like you are doing all that you should. Please keep us posted.

Wow! That was some surgery! (I'll take a simple orchiectomy any time....)

Prayers that your recovery goes smoothly and that you don't have any lasting undesired side effects.

Friday, the doctor will remove my catheter and take out the staples.

Next comes toilet training. I will have to wear a diaper until I get the control down.

Most guys have a ring around their urethra slowing or stopping the flow, and have to squeeze to void. I don't have one of those thingies anymore, so I will have to learn a new way, the way all the women do it.

I am already taking a certain amount of comfort in knowing that either I have eliminated this threat of cancer, vastly more likely, or I was going to die of prostate cancer and nothing would have prevented it, it has already metastasized and I was just too late. (extremely small chance of that).

More later