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Posted 10/5/2011 6:04 PM (GMT 0)
Currently, I am on the fence. I am 51 and single and this incontinence has really changed my life. Every doctor has recommended ART because PSA of 49.7 prior to RP just to be safe. My surgeon was more optimistic, but now recommends ART because of my post op stats. (in my sig) just to be safe.I can deal with the incontinence, I have to. The possible SE's of ART-not so much. In fact I am pretty sure I cant deal with bowel probs and that scares me more than the PCa. Am I correct that incontinence and ED will never improve after ART?

I see some here that start ART soon after surgery and some that wait until the PSA starts to rise again. I know everyone is different-physically, mentally, age, married or single. Is there a way to find out just how dangerous it is to wait rather than possibly doing ART unnecessarily?

I am cynical that my surgeon is recommending it to avoid the status of failed surgery more than my QOL. He referred me to a pediatrician that just graduated as RAD ONC with little experience with PCa. Seems he has more experience with other Cancers. Super nice guy, but I am concerned about his inexperience with PCa. The surgeon said light dose-33 treatments and the Rad Onc says full dose-42 treatments. So even my team does not agree with each other.

Your thoughts would really be appreciated-thanks in advance
Posted 10/5/2011 6:10 PM (GMT 0)
Updated sig, but it is not showing yet

Margins were indeterminate as the PCA was right to the edge.
Posted 10/5/2011 6:32 PM (GMT 0)
Hi Startech,

I'm sorry to hear about your path report results. With such a high Gleason score, it is routine for doctors to recommend ART, especially when possible positive margins are present. With clean scans and no other evidence of mets, and SVI negative, you can assume the cancer was local.

If there is no sign of mets, then waiting for ADT would depend on your post-op PSA. If it is undetectable, then you might consider waiting for a rise before starting ADT. If not, it would probably be better to begin as soon as you are healed. But if you elect to wait, you should use ultra-sensitive testing and be ready to take action if you perceive a confirmed rise, and definitely at or before PSA reaches 0.1.

Like me and others, you have a very aggressive and serious cancer. You have to firmly evaluate relative risk. As Dr. Myers said, dead people don't have sex, so with our more threatening cancers, the alternative is much worse than radiation or even chemo side effects. Some doctors, including Dr. Walsh, even consider adjuvant chemo in the hopes of killing any micromets before they can get established. Dr. Scholz, who I see, recommended this for me, but I couldn't find a local oncologist willing to do it.

And if you're going to get treatment, you are right to find the best, most experienced radiation oncologist you can find. The same goes for all your doctors. This is no time for amateur hour. You want someone who does these all the time -- successfully.

Having a post-op PSA of less than 0.01, I chose to wait for radiation until my PSA rose. I went ahead when my PSA hit 0.03 twice, even though that amount of PSA could have benign causes. I just didn't dare take a chance.

I hope your post-op PSA is undetectable. Best wishes,

Nellie
Posted 10/5/2011 6:55 PM (GMT 0)

Startech,  my stats are similar to yours and I wrestled with the same issue for a while...to do ART or wait for BCR and go for SRT. I consulted a couple of different docs and was told that if you have continence issues before ART you will be incontinent after ART.  ED issues here as well and now I have a chance.  After ART very unlikely that will work again.  Then because I am 53 there was concern that bowel issues or bladder cancer may pop up down the road as a SE of radiation.  The most recent study indicates that there is an advantage to ART over SRT for TX of PCa.  40% will benefit while 60% will not experience BCR even without further treatment.  So, to save 40%, 60% would be treated unnecessarily and have do risk the SEs that go with it.  I finally decided to wait for BCR and let the chips fall where they may.  It isn't an easy decision but that's where I stand and my reasoning for it.  Neither of the docs I consulted recommended ART for me.  Not sure if that will help but I feel your dilemma...it really bothered me for quite a while until I made my own decision.

-Bob R.

Posted 10/5/2011 7:10 PM (GMT 0)
Startech,

From a fellow G9: My stats are similar but I had SVI. A few points: 1) Data clearly supports the benefit of ART for high risk cases. 2) You might want to go to a rad-onc that specializes in PCa. However, if your rad-onc is really up to date on the latest equipment and planning techniques .. he might be a good choice despite lack of long time PCa experience. Make sure they have state of the art equipment .. mine uses a Varian Rapidarc. 3) I just finished ART on 9/19. The side effects were very minimal .. an upset hemorrhoid and some increased urinary frequency/urgency. All of that resolved within 2 weeks. 4) My urologist pushes to make sure men are totally dry before ART. They told me they have had men even wait a year. I would not rush until you get a handle on incontinence.  5) You should probably consider adjuvant HT to go with radiation.

Posted 10/5/2011 7:21 PM (GMT 0)
Startech, I really don't have anything to add except good luck with the decision process. I know that it is very difficult to make. Our brothers Bob, Nellie, and Southern Comfort have given your their words of wisdom and what they have done.

Hang in there and I will agree first thing is find the best RT Doc that you can find.

Cajun Jeff
Posted 10/5/2011 8:42 PM (GMT 0)
Startech, I'm a Gleason 8. My PSA was only 3.8 at the time of DX and surgery. I had EPE but negative margins and SVI. I decided to do nothing after surgery and I'm glad I did. So far my PSA has remained undetectable for over 2 years. I'll be having a PSA test next week and hope to remain undetectable. Take a deep breath and try to recover from your surgery. You may become continent in the next 3 months if not sooner and if your PSA starts to rise then you can take action.
Posted 10/5/2011 8:49 PM (GMT 0)
Find a rad-onc that has great experience with advanced PCa cases. You may need lymph node radiation as well as prostate bed. Get someone that has done a lot of this. Radiation dose is for the rad-onc to decide, he is the specialist in radiology, not the surgeon.

Also it is time for to get a really good medical oncologist that does a lot of advanced PCa as it looks like HT might be in your future. Your surgeon has done his work, now it is time to bring in the other experts to do their work.
Posted 10/5/2011 11:29 PM (GMT 0)
Don't even consider using a radiologist that has less than 250 treatments for PC and in your case should be experienced with advanced PC. Also as JNF has indicated get a good medical oncologist who specializes in pc.
Posted 10/6/2011 1:28 PM (GMT 0)
This just goes to show what a great forum this is. Everyone of you have made great points and I have found some level in comfort in knowing that I am not thinking to far off track. My first PSA is coming up in a couple of weeks and I am more nervous about that, than I was with the surgery. If it is anything other than zero, then I will have my answer. HT and ART, but how long do I give myself to become continent. We will address that IF necessary. Zero's will mean to wait for BCR. That is how I am feeling now, thanks all

Nellie-Thanks so much for your post and best wishes with ADT and WPRT, I will be watching for your post.

Bob-Congrats on your 0's. Also congrats on your continence, you dont know what you are missing, LOL. So yeah, we are very close in stats. The study that you quoted: Did it take in to account gleason scores? Thanks also for confirming my thoughts on continence and RT. I used to think wrestling was fun, but not in this case. I was so glad to see you went from g8 to g7.

SC-I remember posting with you before and I am glad to hear your continued success in your fight with PCa. My brother is schooling to become a Rad Tech and he mentioned the same thing, the new Onc's have the latest training and theories. He also said that the new Docs have a lot of rechecks by other specialist and those specialist are more comfortable questioning the new doc rather than an experienced doc. So its quite a dilemma old vs new.

Hey Jeff, talk at you soon.

Thanks Ed. I see you had a larger than normal gland also. Best wishes on your next PSA next week. Waiting for the first after surgery or the first after a rise is a brain shaker. I will be thinking of you also.

JNF-What a year it has been for you. Glad to see those low numbers and hope the PSA stays that way for you. I certainly have some home work to do.

Thanks John T. Your input always means a lot to me.
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