CSN Login
Members Online: 6

Surgery or Radiation Geason score 9

scottstoyan
Posts: 10
Joined: Apr 2013

I know there are alot of threads on this but I thought I would open a new thread and hopfully get some useful advice. First of all I am 52 years old and have no symptoms that anything is wrong with my prostate gland.  My last PSA was 9.4 and have no problem with urination or sexual function.  Every exam I have had including the one I had yesterday feels normal to the examining physician.  I was originally diagnosed with a gleason score of 4+3 on only 2% of one core.  I went for a second opinion and had Dr Epstien from Johns Hopkins look at my slides and he graded them very different as a 4+5=9 and stated that one core had 10% involvement.  This is a huge difference, not only in the gleason grading but the involvement is five times more, somewhat of a game changer in my mind.  I went to the Seattle Prostate Institute yesterday and had a meeting with Dr Ealau a Radiation Oncologist.  He told me my two choices were either surgery or what is called a trimodal approach which is hormonal treatment, seed implant and focalized radiation.  I am going back next week for a bone scan and a ct.  This has to be the hardest decision a guy has to make.  Due to the aggresivness of my cancer even, by the time I am done with radiation, hormonal therapy and a seed implant I am open to a good chance of a reduced quality of life, so now I am back to looking at what I never wanted to go through with and that is possibly surgery.  I have a phone consultation set up with Dr. Shaeffer at the Johns Hopkins next week and a multi-disiplenary consultation at the University of Washington next week also.  I guess at the conclusion of those meeting and along with some of your support I will make my decision.  I appreciate your advice and thoughts in advance

tp23
Posts: 11
Joined: Apr 2013

Scottstoyan -

     First of all, let me begin by saying that I'm sorry we're meeting under these circumstances.  My wish for you and all of us here is a long, healthy life, free of the troubles facing us at the onset of our diagnoses.  I am by no means an expert in this field.  I'm mildly versed only from being thrown into the fire.  My knee jerk reaction is that while your Gleason is indicative of an aggressive form of cancer, detecting it in only one core (out of 12?) at 10% involvement should play an important role in your decision making process.  I would think its location within the prostate would also play a role in the decision process.  The fact that your DRE's and other functions are normal would suggest to me that whatever has been detected is highly likely localized at this point.  All these facts would seemingly leave you with many options regarding a course and modalities of treatment.  I think I can speak for a number of us here that can attest to the fact that you may receive a large number of varied recommendations from equally well qualified, good intentioned medical professionals.  As has been said so many times, do your homework and pay attention to the details.  The path you eventually choose may not be the first, or even the most obvious.  What's important, is that it's the right one for you taking into account all

 

My best wishes to you and your family at this difficult time

yankeefan
Posts: 69
Joined: Mar 2013

best case your cancer is moderately aggressive, i.e. gleason 7; worst case it's even more aggressive, gleason 9. if you dre's are negative and assuming you've been having your psa tested annually, there is a decent chance the cancer is still contained within the prostate. At your relatively young age, doing nothing with this aggressive cancer is not wise. get the best advice you can and then choose. btw, i had my 2nd oppinion done by the same guy at john's hopkins, he graded mine slightly better than the original pathologist where i had the biopsy done, the first pathologist graded my sample (I had one core out of thirteen positive) as gleason 7 (4,3); Dr. Epstien graded it as gleason 7 (3,4). Either way, it didn't materially change my situation. I had my open retropubic surgery at john's hopkins last month. If you're in Seattle, I assume they have some good urologists there. I personally have never spoken with Dr. Shaeffer, he's not the surgeon I had, but I suspect all the urologists at john's hopkins are very well informed. As far as getting rid of the cancer is concerned my sense is that either radiation or surgery will accomplish that equally well; you just need to decide what the chances of side effects may be and make a choice. I posted in another string that I have a friend who was diagnosed with pc at 55, he's now in his early 70's and is fit as a fiddle, no incontienence, no impotence. his surgeon was patrick walsh, a well known john's hopkins urologist who no longer operates. The surgeons there who have worked with him and have built on his techniques are very good too. I don't know about the radiation, but if you should choose surgery, your likelihood of a good outcome will dramatically depend on the skill of your surgeon, so choose wisely. Reading the posts on this site, you will see there are many who have problems. If you go the robotic route, which seems to be the rage, you must especially be careful re the surgeon. Make sure you choose one who has done hundreds, if not thousands of them. robotic surgery by someone who really doesn't know what they're doing will probably not turn out well. I suppose that is also true of the retropubic (open) prostatectomy procedure too...so can't emphasize enough that the out come will be a function of the skill of the surgeon. if he/she is really good, you outcome will likely be good, and vice versa. cancer is the pits, no doubt about that...but you're still young...this doesn't have to be the end of anything for you. younger men recover their potency faster than older men. hopefully you are a good candidate for nerve sparing surgery, should you go with surgery. If so, make sure your surgeon understands that procedure. Note, if you have surgery and it turns on the cancer has spread beyond the prostate, you can always follow up with radiation. Let us know how the discussions with Shaeffer and the university of washington go.

best of luck

scottstoyan
Posts: 10
Joined: Apr 2013

Hi Yankee fan thank you for the very well thought out reply.   I am going to have a third opinion done at Washington State University but I am also going to have a phone consultation done with Dr Schaeffer at the Johns Hopkins.  As a matter of fact I would be very very interested how you thought about the entire ordeal as I am already leaning towards having my actual procedure done in Baltimore.  Dr. Schaeffer from what I read learned from Patrick Walsh himself and does both open and robotic.  I know i would be coming a long distance but in the end i would really love your opinion whether it is worth it or not...in my mind I would think it is to get the best experience possible and I just don't know if there is more talent in one team as there is at the johns hopkins.  Your thoughts and experience there would be much appreciated

yankeefan
Posts: 69
Joined: Mar 2013

first, I should emphasize that you should strongly consider radiation and/or other treatments at the same time you consider surgery. Every case is different and in yours something other than surgery may be the best; that's hopefully what the urologists you are talking to will help you sort out. I live relatively close to Baltimore so it was a pretty easy choice to go there for my surgery. My regular urologist doesn't take any insurance so that was also a factor...primarily though I was swayed by the reputation john's hopkins has in this area. The two urologists my normal guy recommended I talk to at jh were bal carter and alan partin. Both have been there quite awhile. I believe dr. carter only does the open procedure, while dr. partin does both kinds. I have seen videos of dr schaefer on their web site and he looks pretty impressive too. I happened to call dr partin's office first and my wife and i went to see him in march. he's a nice, easy to talk to guy, but pretty much no nonsense....when we asked him who he would recommend for the surgery, he said "i can help you out" so, at that point we thought, why not just go with him....he struck me as about the right age....probably in his 50's...not too young and inexperienced but not past his prime either. He also appears to be very well thought of professionally. My sense is Bal Cater would have been a good choice too...he has a great reputation and has done literally thousands of prostatectomies, most with very good results. He is probably a little olded than partin but not so old you would worry. my urologist probably recommended him as high as anyone (he's about the same age as dr. carter). My prostate was quite large...I suffered from bph for years before I found out I had pc. Because of it's size, Partin recommended against robotic surgery, he implied he could do it but said it would make his job much easier if I had the open variety...he  offered that you generally want the surgeon to have as easy a time as possible. So I had the retrobupic/open procedure.

I found jh to be a good experience, my only complaint...and I doubt it's specific to jh, is that they discharge you after only one night. If I had it to do over, I'd try to stay at least 2 nights. That first night at home was not good...too much pain and just not as well set up to deal with it as being in a hospital room, with nurses to take care of you, etc. btw, the rooms at jh are all private and the room was good sized with it's own bathroom and a separate bed for my wife to stay with me. That was convenient, especially since we were coming from out of town. I found the nurses at jh to be good. Another good thing about jh is that both dr partin and the hospital took my insurance. I'm 68 so I also have medicare part A for the hospital part of the bill and coupled with my other health insurance plan that was completely taken care of by insurance. The total cost (amount billed) for my two days at jh was $14,300. With my insurance, my out of pocket costs were only $300. See the post on this site re cost of prostate surgery for a breakout. JH wasn't as expensive as other hospitals/surgeons I have seen posted on this site. I'm sure one reason they get you out of there so quickly, i.e. only one night in the hospital, is to keep those costs down. Also, I believe the retropubic/open procedure is much less expensive than the robotic procedure. The robotic machines are quite expensive and they have to recoup those costs somehow. 

while I recommend jh, there are probably other hospitals that are real good too. You'll have to make your own mind up there. Like I said, for me, being less that an hour away, it wasn't a difficult decision. My sense is that if you should decide to have surgery and have it there, you would be in good hands. Schaeffer, carter, partin are all very experienced. They will tell you though that there are no guarantees. But going with highly skilled drs. increases the chances of a good outcome. also, hopefully you are a candidate for nerve sparing surgery, if you decide to go that route. They will likely determine that in your pre-op check up, which will include a dre.

hope this helps...best of luck...

scottstoyan
Posts: 10
Joined: Apr 2013

Yankee fan what surgeon did you have at the Johns Hopkins?

starr15
Posts: 31
Joined: Oct 2011

Ask your doctor about MRI prostate for local staging. Also ask about a PET scan. There was a study at the recent 2013  AUA meeting regarding use of PET for intermediate and high risk PC prior to any  treatment.

yankeefan
Posts: 69
Joined: Mar 2013

hope that helps...

Bill Curry's picture
Bill Curry
Posts: 10
Joined: May 2011

If you live in, or near, Seattle, I'm surprised to see that you've not consulted at Seattle Cancer Care Alliance. You get the research benefits of the Fred Hutch center and the clinical expertise of the UW; you don't need to go to Baltimore. Surgery v. radiation: After about five years, the side effects of both tend to merge to a common outcome. Surgery's side effects kick in right away and then recover; radiation's side effects are slow to accrue, but accrue they do. I am in my seventh year as a stage 4 prostate cancer person, and my strong counsel to you is that you should use the time between now and your primary therapy (surgery, radiation, or whatever it is) to develop a regimen of physical exercise and healthful diet. If you're a triathlete or Ironman, ignore that statement and just keep truckin'. Best wishes for your choice of primary therapy. Remember: There's no quality of life if there's no quanitiy of life.

scottstoyan
Posts: 10
Joined: Apr 2013

Hi Bill thanks for the reply...have you gone to the SCCA?  I am scheduled next week to a multi-disciplinary appointment (medical oncologist, radiation oncologist and urologist)  If you have had treatment there I would appreciate your feedback

Mounty
Posts: 42
Joined: May 2013

Scottstoyan,

One more piece of advice to add to the excellent recommendations you've already received: you might want to read Patrick Walsh's "Guide to Surviving Prostate Cancer" (third ed.) (Walsh is at Johns Hopkins). I read his book in part to prepare for my medical consults after a recent diagnosis and it really helped me to ask the right questions.

Best wishes

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network