J's Journey

Hello nice folks. I am a newbee into the fraternity and am going up the learning curve as many of you have done. As per my signature line, you can see my initial diagnosis. With no other information, I look like a prime candidate for surgery. All of the normal tests are either done or scheduled. I am proceeding at this point as if they will all come back normal as my urologist and another urologist I spoke to as a favor from a friend (you know the drill...its all about who you know) have said that I should have surgery within 3 months to minimize the threat of positive margin. In other words, I don't think I can wait until the final test is done.

I know I am rushing things a bit, but am truly "hastening slowly" to make sure I make the right move within the window. My predisposition as are many now adays is to do the daVinci surgery. My research has narrowed it down to two surgeons in the Philly area that are good enough to have a major backlog. Neither one of them can see me even for a consult until mid-late June. I am finding though that everyone hedges their bets and books multiple doctors so there are cancellations and I plan to call every few days to try to improve that date. I am leaning towards this procedure because my otherwise fairly youthful body (I have worked out regularly for most of my life) has a tendency to throw blood clots out of my legs (deep vein thrombosis for those in the know). Therefore a somewhat bloodless surgery has a lot of appeal. I have also either spoken to or heard from several survivors of that procedure who relate fantastic results. I am however sure that there are some horror stories as well.

My urologist is recommending the open nerve sparing alternative, which of course he is more familiar with and says that there are some horror stories with the new "sexy" method. I suspect though that from my research that the surgeon might be more key in this case than the procedure as the technology is now fairly mature, just not widespread. The other urologist said that probably 20% of all surgical procedures for prostate cancer are now done in this fashion. My current urologist will however support me if I want to go over to the dark side.

I am sort of in limbo now until the tests are complete in the middle of this month, which hopefully will qualify me as a surgical candidate, otherwise I will be back for advice. In the meantime, if anyone would like to make comment on the decision I have to make, it would be most appreciated. Its been therapeutic just writing my story to an audience that I know will not necessarily react with the typical "well that's one of the better cancers to get if you had to choose". Hello, I didn't choose and in fact don't feel lucky, but am determined to beat cancer and do so with some quality of life for the short and long term.

J:

Since you had to join this group, your positive attitude will serve you well during the next few months.  Keep us posted and take care.

Dutch 

I too, think you are doing the 'right stuff'. It's a difficult experience, but I expect that you will find your way through it. Stay here with us, please.

Regards,

Bill

Hey Survivor Wannabe:

FYI, the open procedure witht an experienced surgeon is not bloody.  Ask your prospective surgeon how many of his patients need a transfusion.  The good ones keep track of these statistics.  If your guy cannot give you an answer, he is most likely not what we call an "expert", someone who is a seasoned veteran with exemplar credentials.  I had the open procedure.  My guy's stats:  2% of his patients had transfusions.  That's low for any procedure.  My open surgery took only one hour, which meant he went in, took it out and closed.... uneventful...which is the way you want to go.

Whatever procedure you choose, make sure your surgeon is an expert. 

I read through a bunch of forums and at first blush this one seemed to be the most informative. You folks are great.

Let's see, first of all SJC, my current urologist is recommending open surgery and although he does these regularly, I asked for the affiliate hospital University of Penn that has a fantastic reputation in my area for open and robotic. The guy he recommended was confirmed by a prostate cancer wellness counselor I have been seeing as well as confirming his robotic choice as well. I also have talked to several survivors that personnally had surgery done with both with excellent results. After doing a good amount of research I recalled my local urologist and he recommended I settle down until I get my other tests back to ensure that I am a surgery candidate at all. I hate waiting, but that's what I am going to do until I get closer to the last test and then start working on moving up the appointments. I appreciate your advice though as I keep hearing that the surgeon is more important than the procedure as long as the options are viable.

Dave, the DRE was positive and being that I had 6 out 12 samples positive, I certainly don't want to wait. I am hearing from 2 different urologists that I should have surgery within 3 months. My wife just came in and told me about a friend who had surgery done by the open surgery guy recommended at U of P and he never had to wear pads....hello I should be so lucky. I am starting to be a little bit more open minded about the procedure options. I have friends that have influence at the Cleveland and Mayo Clinics and am getting recommendations out of DC as well as yours in NY. I feel though that I have to get my tests results back before I put the pedal to the metal. Go for the bone scan tomorrow....blood tests on Monday, then the MRI the following Monday (only a couple of the machines in the area that do what needs to be done for prostate cancer).

Thanks to you guys as well Bill, Jim, Dutch and KW. I appreciate the support.

PS. As soon as I figure out what Kegels are, I'll start doing them.

Hello everyone. I thought it time for an update, partly for my own piece of mind and partly for those that will follow looking for what to expect. Let's see, I felt like I have done every test known to man..being stuck, prodded, irradiated, photographed from every angle etc. That's OK, I thought that was the case when I had my first deep vein thrombosis and pulmonary embolism, but unfortunately discovered that wasnt' the case.

Most of the tests were pretty routine except fo the MRI with endorectal coil. The coil stuff immediately makes one feel uncomfortable, doesn't it. This was well warranted when the specialist conducting the test starts by saying that this will be at least less uncomfortable than the biopsy I had. I replied that I guess that means that he is to administer local anaesthia and that the procedure will be over in less than 10 minutes....well not quite. No anaesthesia and what he told me was going to take 20 minutes seemed more like forever was the result.

At any rate, all of the tests indicated as best they can tell that my cancer is contained within the prostate....hurrah!. Unfortunately, the cancer being shown in 6 out of the 12 samples on one side and up against the capsule wall means that a good part of one nerve will have to go. Well, I guess one out of two is beter than none. Incontinence was my biggest fear and I was told that that should not be a problem....we'll see.

The interesting thing is that my local urologist had done a couple of RALPs while I was going through the tests and in so doing his recommendation for treatment had changed from LRP to RALP. For those of you not used to these acronyms, he now was recommending DaVinci. As he started to describe his reasoning, I told him that he had me at hello (reference movie Jerry McGuire). In other words, that's what I wanted in the first place after fairly extensive research.

He then recommended one Costas Lallas out of Thomas Jefferson University Hospital in Philly as he knew I was after a doctor with lots of experience in that procedure. THUH is rated way up there in terms of urology in US News and World report, which I admit might not be the defacto standard for best hospitals, but none the less made me feel comfortable. The two guys I had tried to schedule elsewhere couldn't even see me until June. Through my urologist's connections, I got a consult the same week and am now scheduled for surgery 5/29 several weeks before the other two recommended could even see me for an initial consult. THUH did the first robotic surgery in the Philly area. Lallas just does DaVinci and seemed a straight up guy. I doubt that anyone has used him on this forum, but if they have, would appreciate feedback.

One word of wisdom here, which may not be a big deal. Only two hospitals here use the MRI with endorectal coil, University of Penn (which my local urologist is affiliated with) and Fox Chase. My guy at Thomas Jefferson doesn't feel like it really tells him a lot and certainly doesn't change his strategy for surgery as cancer penetration outside the prostate at this stage is typcially microscopic and not detectable. I tell everyone this not because maybe you could avoid the discomfot, but because I had to wait for the biopsy to heal before undergoing the ordeal and probably could have scheduled surgery earlier. My local urologist countered by telling me that he had a patient that showed cancer of the bladder with the MRI, which way changed his treatment recommendations. The only other thing that irriated me was that the tests showed that I showed signs of degenerative arthritis at the bottom of my spine. In inquiring what I could really do about that, my oncologist...who is also my hematologist for the blood clot issue let me know basically nothing as I work out regularly and can't take aspirin as I am on blood thinners....hello why tell me, but doctor's feel obligated to do that it seems.

So now I am a month out from surgery, not having had any surgery more drastic than a tonsilectomy when I was in my early twenties...that was major trama by the way, but Demerol fixed that problem and a couple of weeks later was back to normal. So begins the waiting game. I have worked out continually for most of my life, so am stepping up my workout regimen and have read the Kegel procedures and am starting them today.

PS. I think I might just shoot the next person who tells me that they hear of all the cancers to contract, that prostate is one of the better ones to get and I haven't even had the surgery. Can anyone relate to that?

Sounds like you are on the right track. Doing your homework really pays off. Keep up the good work.

I can totally relate the "good cancer" cracks. I guess folks mean well but minimizing it does not make me feel better. I may have to shoot a few myself, shoot them the bird anyway ;o)

Joe

I believe that exercise is the key right now. I worked out 2-3 hours every day and it really paid off.  I lost 30 pounds which I needed to do anyway. Upper body strength ( to help move), abs, and heart were all a big help in recovery. Also did power walking. Two weeks after surgery and I have to make sure I do not do too much. Also I was very careful with my diet.  Good luck.  Ed

S_W
Even though I knew people meant well, I wasn't crazy about the "Best one" cracks either. Then one of my dearest Cousins was diagnosed with Lymphoma, and my Brother was diagnosed with a Stage 3 Melanoma, and I realized....I do have the best one! Keep the faith! With your positive attitude, I think you can safely change your name to survivor_gonnabe!
Mike