Another newbie joins the club

Hi everyone.

I've been lurking for quite a while, It is incredible the amount of knowledge and support that is shared here. In today's world of medicine, I have found it very difficult to get real information about our disease. It is because of this forum and the dedicated people here that I have been able to educate myself. It is 7 weeks today since Dr. Tully in Birmingham did the deed. They are tremendous! I am pretty much continent with only a few drops here and there. I had non-nerve sparing so ED is real issue. I did however have some "decent flow" with pills and agressive therapy from my wife. My local urologist was "disappointed" with my psa .039 a month after surgery. I thought it was pretty encouraging. He thought it should have been almost zero. Anyway, Dr. Tully and Dr Cardinale (radiology/oncologist) both strongly recommend igrt because of the gleason, amount of cancer, and the seminal vesicle invasion. That begins 11-15. I hope the side-effects will be minimal.

Anyway, if there is any way I can help anyone here... just ask.

Thanks to everyone for being a part of this forum!

Mike

Thanks Casey59.
I put my info(psa,et.) in my signature. Is that the way it's done?

Hi Mike

Welcome to the fraternity you didn't have to rush to join. Do you live in the Birmingham AL area? I live in Helena AL and I do not know of any other HW recent members in the local area. Send me an email with your contact information and maybe we could get together for a cup of coffee and local PC support. I had my RALP in June at Shelby Baptist Hospital and I am doing great except for the ED.

Terry TWG

Post Edited (The Water Guy) : 10/27/2011 11:39:36 AM (GMT-6)

Mag, thanks for the kind words!

Hi  terry, No I am not from Birmingham although I loved it there. I was referred to Dr. Tully in Birmingham by a former patient from Fort Lauderdale. After doing some research on the web and here, I realized the importance of finding a surgeon who had done thousands of Davincis rather that the thirty or forty the local boys had done. I flew from Ct to AL to have the procedure done. The biggest selling feature for me was the fact that Dr. Tully's group did not close you up until there were clean margins. I would have assumed everyone would do this but apparently not. I asked my local urologist and he confirmed that most do not. The people down there are so nice and caring. It gave me confidence in their ability to cure me.

Thanks again guys!

Thanks Geezer.

Speaking of pads, I use a pad just to be on the safe side. Like many, totally dry at night with the occassional oops during the day. Seems to get a little better every day. I have found that using the female shields work out better than the very heavy and thick men's liners. Also, less expensive.

Thanks again, Mike

Yup... 41 cores. The funny thing was I put off the regular 10 or 12 core biopsy in the uro office and opted for mri-s thinking I could avoid all the pokes and possible cancer seeding, possible infection, etc. unfortunately, it did not really identify the cancer. Funny, because my prostate was almost 75% full of cancer.  In hind-sight, it was probably denial that kept me from doing the biopsy. I was one of those people that was concerned about getting on the medical escalator. I really thought It was just prostatitus. I couldn't have cancer. I did the saturation bombing, I mean biopsy, to make sure there would be no false negatives. When I got the results of the biopsy, I realized it probably would have detected the cancer with just one poke. Oh well. Obviously I was put out in a hospital setting and never felt a thing.

I am not a doctor or an expert but why is your URO/Oncologist recommending IGRT so early after the surgery. You did not post much of your post pathology for us to understand the direct need for RTother than SVI. Your 1 month PSA was only .038 and most URO's do not like to do the fist PSA tests until  90 days post surgery. I tried to get my URO to run mine early and he would not, as he told me it can take that long to get all the old PSA out of the system. Have you gotten any second opinions on RT or is there something bad in the pathology other than the seminal vesicle invasion, that requires such early radiation ?

In my case I was a G7 with 60% of my prostate tumor involved but it was 100% organ confined and I do not have to do further treatments unless I see a rise in PSA down the road.

Terry

Mike,

You should also think about coming to the 4th annual NY GFMPH gathering next September, CT is close to NY. You can meet many of us older crazies in this forum.

Terry

Hi again Terry,

I'm so glad you asked...

I was wondering the same thing myself. Dr. Tully down in Alabama thought that based on the concentration of cancer, psa over 20 and increasing rapidly, svi and gleason 7(4,3) that of course I was at a much higher risk of cancer spreading. Even though the margins were negative, he thought it would be wise to do the radiation as a pre-emptive strike. When I met with the rad/oncologist, he suggested that with my numbers, the studies suggested a better chance of cure by adding the radiation now rather than waiting for a psa rise. He seemed pretty adamant about it. He is very well respected here in CT., one of the best. He spent almost an hour with me...very impressive.  My local uro wanted the psa done after 1 month post rp. I asked him if that was early and he replied he likes to do it at 1 month then 3 months. I too thought the .039 was pretty good and would probably come down even more in a few months. But again, I've seen where many people here have the radiation soon thereafter and others wait to see if there is a psa increase. I was hinting to my wife that maybe I am ruching into the igrt too soon but she thinks I'm being negative. "There's no turning back. Let's kill it now while we can." And that makes sense. It also makes sense to wait awhile to heal more a watch for any psa increase. I'm really torn on this. Any advise is surely appreciated. I know there is no right or wrong answer on this.

Thanks, Mike

Bud,

The NY GFMPH is held at Worried Guys house just out side Rochester NY. This year it was Sept 22-25th. There will be another in Louisiana in April at Cajun Jeff's (Corvetteman) place in Baton Rouge.

Mike,

GFMPH stands for "Good For Men's Prostate Health" It is also a group of HW Prostate members who meet 2 times a year to meet each other face to face and have a good time with a bunch of great guys who are all on PC journeys. If you  google or search the HW forum "GFMPH" you will find several threads discussing GFMPH and past gatherings.  I made the September trip at the last minute after being talked into it by several members and it was one of the best and most fun times I have had since college. I will be at the Southern version in April.

As you will IMO always get the 2nd opinion you want, if you look hard enough, its really your call. If it was me I would wait at least to you get a recurrence,3 rising psa's after it hits .2, which is not a guarantee at all. I dont have stats on srt success rate even with a recurrence, but it really is not all that great, check around. Find an oncologist who is not in such a rush to radiate. You may be cured as you sit there. There certainly isnt any medical evidence to say your not. Its the medical escalator thing. The fact you use that term and wondered the same thing, tells me you are a savvy guy, You probably can find one, urological oncologist, in Conn. There is a lot opinions here on that very issue. adjuvant/ salvage radiation. Remember its your life, you owe ZER0 allegience, to the medicos, they get paid nicely Research the topic yourself. If you want to talk over treatment, which is in the news now. There was a gentlemen on this forum Who had a postop psa of <.04. Had post op radiation and a clinical trial, with a psa of <.04. No one on this site thought that was strange. Oh yea we are not doctors...... think about it.

Mike.

One other thing I have seen here from guys facing SRT  post op treatments is that it is a good idea to also wait until you are 100% continent as the treatments can set continence back.

Post Edited (The Water Guy) : 10/27/2011 3:52:35 PM (GMT-6)

Thanks Logoslidat, Your post mirrors that little voice in my head. I am thinking what if I wait another couple of months, retest psa and go from there. What if psa goes down more? It's funny because my local uro ordered the psa test that only goes to .1. Not that would have been fine as John Hopkins considers that a zero but I thought why not be as accurate as posible. I called his office and requested the more sensitive post-prostatectomy psa test. When I got my .039 result back, the uro was concerned that it had not gone to zero. Funny, because the test he ordered would have only shown <.1. I thought I read that there was not any advantage in doing srt early and actually just as effective if done soon after any psa increase is seen. Letting the body heal would certainly decrease chances of radiation side effects. And like you said, Maybe I'm cured now. It is a tough call. I want to believe that most Dr.s try to do the right thing with their patients, I do believe Dr. Cardinale has my best interest in mind. I'm sure he would agree that waiting a few months would not be detrimental. In looking at the member's histories here, everyone is so different. Some people with "smaller amounts and less agressive cancer have more recurrence than other people with seamingly worse cancer. Everyone's experience is so different. Thanks, Mike