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Posted 2/11/2012 3:56 PM (GMT 0)

After my husbands RP he NEVER had undectable PSA.

We are investigating next step.

We have been told to try Radiation and are having a Sodium Floride 18 test done first as all other tests show nothing, stats below.

Has anyone with a RISING PSA right after surgery AND CONTINUEING had any luck with radiation??????

This roller coaster ride just never ends and although love to talk to others on this forum, just would like some data on anybody's results.

Thank you!

BOOGEE 

Posted 2/11/2012 5:17 PM (GMT 0)
I do not have any experience like your husbands and I am not an expert or a doctor but with no bone mets and the G6 & 7 grading it is possible that some prostate cells got left behind in the prostate bed. Normally in a case like yours SRT is definitely a possibility. You need to find a good radiation oncologist with extensive experience in PC radiation therapy. A lot of guys here with similar journeys like your husband have had successful SRT after RP and have gotten back to the undetectable PSA.
Posted 2/11/2012 5:46 PM (GMT 0)
Thank you Waterguy.

Will keep you posted as to next step if I can find you again.
We are new as you can see to this forum so if you have advice on keeping in touch with certain people.
I sometimes see a thread breaks off eventually.
I try and read previous and next posts but they are often backdated.

Stay healthy!

BOOGEE
Posted 2/11/2012 6:11 PM (GMT 0)
Even though I am at this time not having any serious PC issues I do post a lot as last year I got so much great advice early in my journey. I also have a lot of new friends thanks to HW and attending GFMPH in NY last September. I  keep my email contact open in the forum and have a lot of guys and gals who contact me on a regular basis.  This is first a support group and a lot of us veterans stay around to support newbies like you and your husband.

Terry TWG

Posted 2/11/2012 6:54 PM (GMT 0)
It's called "persistent PSA" and it means the surgery failed..But there is a fair chance (50-50) that SRT may be successful in curing your cancer if it is still localized..When combined with hormone treatment in high-risk cases like yours, the effectiveness of the radiation is considerably improved...

It's time to talk with a Radiation Oncologist who treats a good number of PC patients and has access to the latest radiation equipment...Since the radiation will stop the healing process, the recovery from surgery, incontinence, it is usually postponed until that process is complete....But the sooner you can, the better...

Best of luck to you...
Posted 2/11/2012 9:22 PM (GMT 0)
Fairwind,

Thanks for the encouragement.
We haven't ruled out radiation as we have seen 3 Oncologists 2 radiation Oncologist, and 1 medical Oncologist who was the one who didn't think radiation is what we need, primarily because of our high PSA post-op.
I haven't had anyone on HW discourage us from having radiation so that is a good thing.
I also haven't heard from anyone who's case is like ours either.


 Keep being positive!

BOOGEE

Posted 2/11/2012 9:31 PM (GMT 0)
Terry,

Thanks for answering back with kind words of wisdom.
Our situation is jsut don't know which radiation Oncologist to use as we have been told 3 different things. GO Figure!

As you can see we are starting a study with Stanford having the sodium floride pet scan next week 3 tests with a week or so. Once we get those results we will start aggressive treatment, starting with
the Lupron shot as we have started on casodex already.

We may end up back at the origional radiation Oncologist that our surgeon referred us to as they have all the state of the art equiptment we were told.

Talk Later!

BOOGEE
Posted 2/11/2012 9:50 PM (GMT 0)
BOOGEE,

Sorry to hear surgery didn't do the trick. I had RP in 2009 and first post-op psa was 0.02 (not what we were hoping for). psa two months later was 0.05 and two weeks later we started radiation to the "bed area" in hopes that the remaining cancer had not spread outside that area. All tests after radiation to this point have been "undetectable".

I was 45 when diagnosed. Gleason was 3 plus 3 both before and after surgery. Initial staging was T1 and upgraded to T3a  due to the positive margin. 

Just wanted to share and hopefully encourage you. Good luck.

Terry

Posted 2/12/2012 3:03 AM (GMT 0)
Thanks Terry,

I am reading that people who have positive margins and a low PSA post-op seem to do well with RT.
I am hoping our case will be remarable and also work.

How did you do with radiation and how many treatments did you undergo?
Everyone seems to be encouraging too!

BOOGEE
Posted 2/12/2012 3:26 PM (GMT 0)
This could be a case for a second opinion on the examination of the surgical tissue by another pathologist. The opinion of negative margins indicates that psa is produced by significant tumor outside of the surgical area. This suggests that radiation is less likely to be successful.
Any G 4 is cause for concern and psa serves its best purpose in cases such as Mr BOOGEE. No matter the direction of treatment, he will not know his chance of success for a few years and the anxiety of delayed results will replace the fear born of surgical failure. in any case Mr. B has a very long time to go.
Posted 2/12/2012 5:39 PM (GMT 0)
SRT did nothing for me (see my signature). Your PSA doubled in 1 month. I believe SRT is most effective when the PSA is much lower. I don't think it is useful with a PSA at your level.

I wonder if you shouldn't do a retest on the PSA?

Mel

Posted 2/13/2012 12:19 AM (GMT 0)
BOOGEE,

I did very well with radiation, at least as far as I can tell. I had 39 treatments total. The only negatives I experienced were a little fatigue at times. That could be because I drove over an hour each way to treatment and worked half days. Also shortly after I completed radiation I started seeing blood in urine. Don't know if it was related to radiation or not but had cystoscope and was found that a staple from surgery had begun to corrode and was causing the bleeding. Outpatient surgery fixed that.  Incidently, I'm due to have next psa test Tuesday. 

Posted 2/13/2012 4:53 PM (GMT 0)
Terry,

Hope your next test proves nearly zero if not zero.
I am thankful for your encouragement and will keep you and all up to date with my husbands progress.

Did you have HT?

BOOGEE
Posted 2/13/2012 8:58 PM (GMT 0)
If your medical team comes to the conclusion that the cancer has not metastasized, then they may approve radiation as a worthwhile treatment...Lots of things go on backstage, including getting approval from the insurance company...

Radiation can be curative, hormone treatment is not considered curative, it's palliative, a delaying tactic..

So if no evidence of spread can be found, then undergoing RT might be lifesaving...Have your Radiation Oncologist present his case strongly..He is the one who has the experience in this area...
Posted 2/14/2012 1:26 AM (GMT 0)
Fairwind,

Who are you suggesting my Oncologist present his case strongly to?

As far as our insurance goes we haven't had any delay in pre-authorization approvals.

I just read an article RE: Alternate Cancer treatment, suggesting mainstream measures hasn't had much success treating aggressive prostate cancer like my husbands.
It said testosterone blocking drugs are dangerous as it reduces ability for PSA production which is anti-angiogenic and it promotes estrogen dominance which feeds cancer.

Any expeirence with this approach?
Still waiting to hear from anyone who has rising PSA post-op that actually started at 1.2 now 3.5.

Thanks,

BOOGEE
Posted 2/14/2012 4:50 PM (GMT 0)
I suggest you find an excellent medical oncologist with a lot of experience working with high risk cases. Often the problem is that they don't know where the cancer is. Scans don't tell a lot until the cancer is in a tumor stage as they generally don't see the micro-mets.

If it is in the bed or some tissue left behind at the apex or nerves then the SRT can be effective. If it is outside the area then SRT won't reach it and you starve it (that's what HT does) or try to kill it with various combinations of drugs including chemotherapy or even provenge. That is why it is important to get with a great omedical oncologist.
Posted 2/14/2012 8:08 PM (GMT 0)
JNF,

What does the T 23 mean? Our surgeon states chemo is not effective for PC only in last stages.

It appears you had RT only not surgery?

Thanks,

BOOGEE
Posted 2/15/2012 12:22 PM (GMT 0)
BOOGEE,
I did not have HT. The hope is that any remaining cancer was left in the bed area that was radiated. Dr. says if detectable psa returns, it will have to rise quite a bit before HT is recommended.
Posted 2/15/2012 4:04 PM (GMT 0)
Tigre,

So did your Dr. tell you what number it would have to rise to?
As you can see ours is 3.5 and my Dr. mentioned when asked 20 would probably be too late to do HT.
It just seems like such a crapshoot, one says don't start too early and others say start right away.
Trying to get an appt. with UCSF, to see if they have any new treatments coming down the pike.
Our surgeon suggested we see Dr. Carroll who is a surgeon.
I think we are beyond that, so hoping to get an appt. with a medical Oncologist.

Stay Positive, as I know it is difficult.

BOOGEE
Posted 2/16/2012 2:02 AM (GMT 0)
BOOGEE,
My Dr. did not put a number on it, only stated that it's probably best to wait as long as safe to do so to begin (if RT fails). You are correct about the crapshoot for sure. There are so many tx options available with seemingly conflicting protocols. It can be very confusing.
In my case, if psa were to become detectable again it would be time to cut ties with the uro and see the best medical oncologist specializing in pc that I could find.
Posted 2/16/2012 2:57 PM (GMT 0)
Tigre,

We did secure an appt. with UCSF with a medical Oncologist early March.
My surgeon was dismayed when we saw a medical Oncologist at Stanford and said we should be seeing a radiation Oncologist, but feel a medical Oncologist might be a bit more rounded in treatments?
We have started on Casodex and Lupron shot was to follow. We halted that until after this Sodium Floride test startin Fri.
I will start another post RE: trial studies.

BOOGEE
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