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T3b post-op. What’s next?

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Posted 9/25/2009 5:45 PM (GMT 0)

I’ve been following posts here since my DaVinci surgery on 8/27. I got a copy of my post-op path report, and was disappointed to learn that I am not cured. Positive margins, seminal vessel involvement. Stage T3b. I had blood drawn for my first post-op PSA a couple of days ago, and will meet with the Urologist on 9/30 to discuss results, and where we go from there.

 

I am trying to anticipate the next steps. I realize I am looking for a PSA of 0.0. How much above that is bad?  How does the Uro confirm the presence of cancer? Does he do another TRUS with needle biopsy? Another CT scan? Am I looking at IMRT, or hormone therapy, or both? What’s the time frame from one to another?

 

I’d really appreciate some input from those of you who are walking in front of me.

 

Thanks.

Roger

Posted 9/25/2009 7:12 PM (GMT 0)
The good news is no more biopsies! There is nothing there to test. The bad news is the path report. I think that the general advice would be to go to radiation at a PSA of 0.2 or 0.3 at the latest. Some uros consider the one month PSA unreliable and may want to wait for a three month test. But, before anything else -- take a deep breath, itq
Posted 9/25/2009 7:53 PM (GMT 0)
You might want to discuss with your uro regarding adjuvant vs salvage radiation.
Posted 9/25/2009 10:55 PM (GMT 0)
Roger,
The path report is not good, the positive margin means the PC has escaped the capsule and the seminal vessel invasion indicates that it has a good path to the lymphnodes. At this point I would be trying to find a good prostate oncologist. Salvage radiation may work on the positive margin, but I would be more worried about the seminal vessel invasion. At this point surgeons and radiologists may be out of their element in giving you good recommendations; you need a good prostate oncologist to review your path reports and give you some workable options. This is not the end of the world, and there are many options still available.
JohnT
Posted 9/25/2009 11:02 PM (GMT 0)
Geezer - Thanks for the reply, but I'm not sure I agree with you about no more biopsies.

Earlier I googled "biopsy after radical prostatectomy" and got back a bunch of responses about studies done about TRUS with needle biopsy, combined with DRE to find recurrence of PCa. Seems the Uro uses the ultrasound of the Prostate site to paint a picture of the "bed", then uses 6 - 8 needles on suspicious areas. Check it out.

A dear fiiend nurse practicioner friend also says take a deep breath and a few days off. Good idea.

Thanks.
Roger
Posted 9/26/2009 3:17 AM (GMT 0)
Hi Roger,
Welcome to HealingWell. And I have the dubious honor of welcoming you to club 3B. One of the first things I did was have my prostate shipped to Johns Hopkins after surgery. Have Dr. Jon Epstein look at it and hopefully restage it.

I have been down this road for nearly three years. Surgery/HT/ radiation...I am doing well and staying positive. My Email is open here and I welcome you to write. We can even chat on the phone if you want to know where I've been, why I went there, and maybe what I might have changed.

Anyway, welcome to one of the finest group of folks you will know in prostate cancer.

Tony
Posted 9/27/2009 1:50 AM (GMT 0)
Hi Roger,
The key for you now is to get to a good PC oncologist. I think Tony's recommendation of sending your prostate to John Hopkin's is a good one. I also saw something on TV yesterday about a second generation CT scan that can identify cancer cells that couldn't be identified with previos scanners. Good luck.
Posted 9/27/2009 3:07 AM (GMT 0)
While my numbers were different than yours, my stuation is similar.  I was mortified by my pathology report, initially thinking that once my surgery was over, so was the cancer.  Statistics pointed to getting the additional therapy of radiation, with two years of hormone therapy.  I'm happy to report that I have completed it all - 6 months since my last 3-month zolladex injection, and my numbers are still the zeros you desire.  This is the big reason I have recommended surgery to many - you then have radiation to fall back on, if there is still some cancer left over.  As my surgeon told me, the good news is that your prostate is in some jar of Formaldehyde, and you know the extent of your cancer.  Now you need to listen to your doctors, and make the decision on your secondary treatments.  Just be thankful that you have secondary options available!
Posted 9/27/2009 3:58 PM (GMT 0)
hawkfan75
Thanks for the response. Your numbers are outstanding, and really give me some hope for the future. Obviously Zoladex worked for you, but what kind of side effects did you have to deal with? I googled it, and the list of side effects was long indeed. I had heard previously about Lupron for use in this situation. Any particular reason why your Uro went for one over the other? Was the jump in PSA on your second test the trigger to start HT? Why HT first and not IMRT, or was that just a scheduling thing? Anyway....

All the best.
Roger
Posted 9/27/2009 4:49 PM (GMT 0)
Roger-
I am sorry about your path report. My family knows the devastation of getting through the surgery and hoping for the best and then finding out that the war is not quite over. As you will see from my signature, my father had a poor path report. I have found that there really appears to be no rhyme or reason with PC. My father had a "focally" positive margin, which means that the cancer touched the margin, but did not go through, he had negative SI involvement, but had a positive lymph node. Similar to you, he had a relatively low PSA and we did not expect spread. We were wrong.
Like so many others have told you, the best thing to do is take a few days....week...whatever and rest. You need to heal from the surgery and regroup. Hopefully we can help answer questions and give options for moving forward. The first PSA is an important one. My father's came back as .07 and then .05, which to many is undetectable, but because of the positive lymph node, we moved forward with IMRT and HT. The thought behind starting with HT is stopping and shrinking any PC cells left behind and then zapping them with radiation. Unfortunately, there are not a lot of good studies that will give you a clear direction on which treatment steps to take. We found that you have to surround yourself with a great medical team, go with what you believe and move forward. My father completed RP, IMRT and has one more shot of his HT and then he will hopefully be following TC an Hawkfan on a long awaited and well deserved HT vacation. We will hope and pray that he will not need to return to HT, but there are no guarantees. Good luck and keep us posted!
Posted 9/27/2009 6:42 PM (GMT 0)
Daughter, hope it works for your dad, he's been through a lot, for sure. Since I am about to start salvage radiation in a week or so, do you remember how many gys they gave your dad?
Posted 9/27/2009 7:44 PM (GMT 0)
Dotty -(Doting Daughter)- May I call you that?
Thanks for your reply, and for looking out for your dad so well. Every response I get to this adds a bit to the puzzle I am trying to piece together. Your data was welcomed. I meet with the Uro next Wednesday, the 30th. I have pages of questions for him. Don't want any more blindsides in this process.

All the best.
Roger
Posted 9/28/2009 1:06 AM (GMT 0)
Dotty works for me :) Good luck with your appointment. I think we met with 2 radiation oncologists, two oncologists and a urologist and the most frustrating thing for our family is that they varied in their opinions and there were no promises either way. Cancer is so frustrating, BUT, there are options and there is hope. There is always hope and there are so many men in worse situations that have done incredibly well for years and years. I hope and pray that you, TC, Hawkfan, Purgatory and all our members in similar situations keep improving the statistics for T3 guys.

Purgatory- I can't remember what the Gys were off the top of my head. I know he did 7 weeks, with the additional radiation to the pelvic area following the bed. I will double check and let you know.
Posted 9/28/2009 2:28 AM (GMT 0)
Thanks, Daughter, was curious, studying how much is or has been given on salvage radiation, mine is suppose to be prostate bed only, and from 70-72 gys.
Posted 9/28/2009 4:49 AM (GMT 0)
Opa N

Yes, having the PSA go to .08 was the push to do additional therapy, but my surgeon and oncologist had mentioned it at the three month date, with the PSA at .01, and my positive margins.  The same day I got the .08 news, I had my first Zoladex injection.  (Thank God for U.S. healthcare!)  I don't know why Zoladex - just went with the doctors recommendation.  Two months later I started my radiation treatments.

I remained active for the two years of hormone treatments, and I feel that helped with the fatigue issues.  I walk an hour every day, and continue to officiate high school sports.  I called them "warm flashes", but they're irritating - suddenly sweating for no good reason at all.  Hormones take about 9 months to wear off, so those still persist.

As my surgeon told me as I started radiation, it would probably kill off the nerves he saved, and he was correct.  There's still some hope, but kicking cancer and increasing my chances for a longer life are more important.

Bottom line - keep up your spirits.  Be thankful that you have second chance options.  You appear to have done a lot of reaearch, and that will help as you make your decision.  Good luck!

Posted 9/28/2009 3:47 PM (GMT 0)
Roger,
I believe that you have read my story by now. Thanks for the very kind post on my website. I had Surgerhy on the 16th of February in 2007. I was in an oncologists office for consultation by the 28 of that same month. We tested PSA a few times and watched in decline to undetectable. But as a 3B, there was zero confidence that it would hold at undetectable. After looking into a study, I decided on action first with HT. In May of '07 I started HT, and in June we started IMRT radiation. I went to adjuvant approach instead of the salvage approach mostly because there so little data on adjuvant therapy. And I knew the direction we were going with waiting until we saw a relapse. Since that time, more data has become available favoring adjuvant therapies in our case so I am glad we did what we did. And as I am starting to come out of HT, I still have my "personal summers" but they are subsiding. During the football games yesterday, for a brief minute I believe I actually noticed the cheerleaders pom poms instead of their shoes...:-) Ugh...I think I have a ways to go...

Anyway, I am doing well. I look forward to your successful therapy...

Tony
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