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Still confused! can anybody help?

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Prostate Cancer
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Posted 7/30/2018 2:35 PM (GMT -5)
Good Day All, We are coming up on the first anniversary since the Prostectomy , and still so many unanswered questions. Obviously, that is expected I understand but our surgeon is still our MD, and we were never referred to an Oncologist etc for advanced metastatic PC. My question is, do we just continue seeing the Urologist for Lupron every 6 mo, wait and see what the PSA does etc ? I have always wanted to be as informed as I can and treat this as aggressively as possible but the Lupron seems to be the only answer available. Which, if that is the case, I'll accept that. However, I read different places that we should have a RO at least by now. I want to just stop questioning and trust that we are in good care. Any thoughts are appreciated ! Thanks and Blessings to all of you
Posted 7/30/2018 2:51 PM (GMT -5)
You posted some months ago that he had a 12 week post surgical psa of 4.8, a significant number and the reason for the androgen deprivation therapy. I believe your urologic surgeon is done now. He is out of his depth at this point and has done all he can do. A medical oncologist, especially one who has extensive experience with prostate cancer is a better call. If you have time and money to travel I have learned that the BEST person is significantly better than the next person on the list from a local doctor referral service. As with most G9-10 patients the surgery is the first of a series of treatments over many years.
Find someone you trust, well recommended, and put your faith in him/her.
Posted 7/30/2018 3:06 PM (GMT -5)
That's a very high post op PSA. He should definitely be seeing a RO or MO. The main question is that given that the prostate is already out, whether the remaining cancer producing the high PSA is local or metastatic. If it is local, radiation may still help, but if it's metastatic, then he should definitely be treated by a MO. Other than Lupron, there are more advanced hormone therapies as well as chemotherapy and immunotherapy. There are some new scans that can determine if it has spread from the pelvic area to distant areas of the body. From your signature, it looks like there was bladder neck invasion and lymph nodes with positive margins.

I think you should be proactive on this because even metastatic prostate cancer can be slowed down to a point where there is significant life extension.
Posted 7/30/2018 3:35 PM (GMT -5)
I agree you need to get with a good Medical Oncologist. With 4 of 5 lymph nodes positive a year ago, radiation may not be an option. But that is something on the list of things to discuss with a Medical Oncologist. Your surgeon is really done.
Posted 7/30/2018 3:53 PM (GMT -5)
I agree that you're beyond seeing your uro anymore. Where are you located? Some folks here might have an idea of MOs that you can speak with.
Posted 7/30/2018 6:32 PM (GMT -5)
By now you should have been referred to an RO. Getting a good MO who specializes in PC would be good to check out your options.
Posted 7/30/2018 8:24 PM (GMT -5)
Do we pay our doctors all this money to be afraid of them...I need to stand on my head to make sense of this....nope that didn't work...I will retreat from this thread..that will work for all concerned
Posted 7/30/2018 10:24 PM (GMT -5)
Sometimes local Support Group members can share experiences about different types of local specialists and regional experts with advanced prostate cancer expertise that they have found. For those near Buffalo, NY, e.g.,

Us TOO Buffalo Metro Chapter
VA Med Ctr - 3rd Floor Room 301 3495 Bailey Ave,
1st Tues 7-9 pm
Contact : Bill Krellner
Email : racer3232@verizon.net
Phone : 716-836-4761

Reference: http://www.ustoo.org/Support-Group-Near-You

Charles
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