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Posted 2/10/2010 5:09 PM (GMT 0)
Welcome to HW, sorry you have to be here. In another thread, you said:

Hello I'm new and looking for some infomation.My psa was 5.4 in november so I had a biosey and had a Gleason of 3+3=6 and 3+4=7. I went to johns Hokins on 1-22-10 an had a Radical Prostatectomy.My pathology came back extraprostatic extension and Positive Margins, pT3a. My Dr recomended adjunct radiation but didn't think I needed to come back to Hopkins as its a 5 hr drive.He sugested I look closer to home.What is the standard treatment and what is the state of the art.I spoke to a friends son who is a radiation onocologest and he said they do IMRT' and use x-rays each treatment for alignment I spoke to West Virginia University Cancer Center yesterday. They do whole pelvis 4 field for half the treatment then IMRT boost for the rest.They do a cat scan initialy for alignment and planing.but once the start treatment they use dots on the skin.[this discreption might not be exact as I was only able to speak to a tech on the phone and am waiting on an appt' to see the Dr] Does this sound like accetable treatment? How much difference does it make on outcome and side effects where you go?I do have confidance and am familier with WVU as my son was treated there 8 years ago for brain cancer.Any help or thoughts would be helpfull Thanks Dick
Posted 2/10/2010 5:27 PM (GMT 0)
Hello Dick, and welcome to HW. Looks like you are on the recovery side of your surgery. How are you doing with that, its been less than a month ago. Are you catheter free at this point, and if so, how are you doing on your incontinence? You should be able to have radiation much closer to where you live. Some will reccomend adjunct, and others will want you to wait to see if you have any recurance after your surgery. There seems to be a change in thinking on the subject going on. The radiation oncologists I spoke with, want to see 3 consecutive rises in post s urgery PSA above .10 before considering going to radiation. You will probably know more when you have spoken to one or more yourself. I had 39 treatments of radiation 72 gys) for salvage. They used instant scan x-rays each time I was aligned for treatment. In my case, it was just the prostate bed they were doing. There are several ways/methods they administer IMRT, we have had a variety of those here with different men and different cases.

Please keep us posted of your situation.

David in SC
Posted 2/10/2010 8:22 PM (GMT 0)
Hi David & James thanks for the reply.My catheter and staples came out monday of last week .My Dr had me remove the catheter myself that was quite an experience. his directions were rotate the tube 360 degrees both ways 2 or 3 times, by the time I got thru that my wife and I were both ready to pass out!After about 10 min sitting I was able to pull it out.It was certianily a different experience than haveing a Dr or nurse pull it out Quickly.I did go in to work last T,W,Th,& Fri. and did to much.This week so far I've gone in 9 to 12 and thats much better.My incontenence is improveing daily.The last few days I've started leaking around noon maybe the bladder is getting tired being at work.I've made it thru the last two nights OK.I have had an ache in the rectum area which seems to be agrivated by to much activity.Laying flat helps and it is getting better each day. At this point I'm waiting for the snow to melt in Baltimore as I need to get a referal for radiation and My Drs assistant is off until tommorow with the snow emergency[Today and tomorow they are supposed to get another couple feet so it may be next week] Thanks DICK
Posted 2/10/2010 8:29 PM (GMT 0)
Others will post their opinions I just wanted to welcome you.
CareBear
Posted 2/10/2010 8:30 PM (GMT 0)
Bemis, hope you don't mind my poking my head in here. Your surgery just happened and, in spite of the EPE and positive margin, I'm not sure why your doctor is recommending SRT so early in the game. I certainly understand the concern about EPE (my husband had that) and the positive margin. I would think that the doctor would want to wait another couple of weeks to see what your PSA results show. On the other hand, it certainly won't hurt to speak with a rad onc or two to get their take on your situation.

Good luck...and let us know how it goes for you.

PS: The Baltimore/DC area is really getting slammed this winter. I'm in New York, about 50 miles north of NYC, and so far we only have about 4 inches of snow. Across the Hudson River, there's 11 inches on the ground.
Posted 2/10/2010 8:33 PM (GMT 0)
Dick, as far as the after catheter stage, it seems you are having the same responses and complaints that the majority of the guys here report, so you are in a nice happy 'norm' for tht part of it. Each day brings more recovery and a better feel for what you are gonna end up with, continent wise. The rectal pain is common, lasting up to 6 months to a year. You gotta remember that a big chunk of you was removed, and lots of supporting tissue in and around the removed gland is freshly incised and will take some time to heal and stop hurting. It's just part of the process, I'm afraid.
Posted 2/10/2010 8:36 PM (GMT 0)

Bemis:  I can not give you any help on your topic as I have not been down that road.  I just wanted to Welcome you to HW and I know that many others that have had RT will be giving you tips and some knowledge.  Good luck on the healing and sounds like you did do just a bit too much.  Rest buddy that I think you will do a bit better with the Dripping!smilewinkgrin

Jeff T

Cajun Country

Posted 2/10/2010 9:21 PM (GMT 0)
Sephe My Dr who's quite the statustition said with my biopsey and stage pT3a there was a 40% chance of recurance and his current stats show beiing able to reduce the 40% by 2/3 with adjunct radiation before the psa is on the rise.I chose him carefully after extensive research for his reputed surgical skill and his knowledge of the probability of reacurance and effectiveness of treatments.I guess at some point you have to trust in someone who has devoted his life to treating prostate cancer.Now I just hope I can find a radiation onocologest who files me with confidence. Thanks Dick PS I finnaly convinced my wife she could leave me alone and get out of the house .So yesterday she went downhill skiing and today went crosscountry skiing The crosscountry areas web site said 45" at 4000'.O well I was told 4 to 6 weeks until skiing and I'm counting the days
Posted 2/10/2010 9:57 PM (GMT 0)
Bemis -- Even if you do not plan to go back to JHU for radiation (which makes sense to me given the distance), you might want to talk with Ted DeWeese (radiation oncologist at JHU) to get his views on when to start radiation and any suggestions he might have for a more convenient but also talented radiation oncologist.   Who did your surgery?   (I am assuming it might be Alan Partin, since you removed your own cath, and I know that is his practice).   Best wishes.
Posted 2/10/2010 10:04 PM (GMT 0)
Dick,
I am also a pT3a, multiple positive margins, multiple EPE, Gleason 4+5. They have me booked for radiation (they use the Calypso locator system - they implant locator transponders as targets for the beam - not sure how that will work now that the prostate is gone, but... ). The people who will do this have a specialty clinic - that's all they do. It was to start 18 weeks after DaVinci (I am now at +16 weeks), but the initial undetectable PSA gave me a respite - now they will start in April, so I won't be road skating with the ice we get around here.
I was told that their standard of practice is to wait 18 weeks to let things heal up.
The marking discussion sounds similar to what I was told, although that part of the crew was trying to sell me on HT & radiation as the first line.
My surgeon didn't quote all the stats, but basically said I should do the radiation, and so far, I'm following his advice (but am driving him nuts with my internet research). I'll have another discussion with them March 15, and get better details then.
Sounds like you are making progress, so continue to hang in there. But do take it easy when you can, it helps the healing.
Posted 2/11/2010 12:56 AM (GMT 0)
medved you were right about Alan Partin Dick
Posted 2/11/2010 5:54 PM (GMT 0)
Go see a PCa oncologist for a different opinion, would not hurt to see perspectives. Since you are taking about odds/percentages...do you have any idea what your chances are with salvage radiation???? I am here to tell you no guarantees exist, talk to a PCa onocologist (not rad/onco) and see what is said. There are more ways to treat PCa radiation methods than many even herein know much about, doesn't mean they are bad or good necessarily, just they exist. I had one of the rarest treatments as my main treatment(neutron & photon=2 machines), but not recommending you do it or any form of radiations (it is worth thinking about if it is looking like needed). Get an education asap, the docs are not as expert as they preach because the nature of the beast is never definitive enough. The prominent PCa onco-docs do have more skills at assessment than do the uro-docs and rad-docs, e.g. like Drs. Scholz, Lam, Meyers, Strum, Barken and others, still no guarantees but perhaps a better served patient....kind of priceless perhaps.
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