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Posted 5/3/2018 2:44 PM (GMT 0)
Still Really struggling making my decision on Surgery V Radiation
Doctors at Dana F seem to recommend Surgery even the RO probably thought slightly better choice.
Was surprised and disappointed to learn they do not do SBRT as not yet been approved.
Talking to my insurance to see if they will let me talk to anyone outside DF on SBRT.
Really concerned on Sexual effects of surgery and how it will affect quality of life and seems SBRT is much better from that perspective and also recovery time but little more long term risky
Going back to Ireland for next week to think about it some more but appreciate any final thoughts either way.
Thanks
Posted 5/3/2018 2:53 PM (GMT 0)
Can you post your stats ....need to see where you are with all this ....thanks ....David
Posted 5/3/2018 2:59 PM (GMT 0)
Every once in a while here we see insurance issues with SBRT. That strikes me as odd since it's not a super new treatment, there are lots of studies on it, and it's certainly less expensive for the insurance company. What type of radiation does the RO at Dana Farber perform?
Posted 5/3/2018 3:30 PM (GMT 0)
hopefully will show in signature. not sure why it did not but biopsy
Gleason 3+3 in 10 locations on March biopsy
Mri showed currently contained
52 years old

DF said the numbers are still not there to prove SBRT for long term. Said it is a possibility they might go there in the future though - will do 20 or 40 sessions
Posted 5/3/2018 3:51 PM (GMT 0)

Dana Farber's RO said...
the numbers are still not there to prove SBRT for long term.

Maybe... but they are starting to come in. We had a posting last week about some recent results. They look promising.

/www.healingwell.com/community/default.aspx?f=35&m=4008876
Posted 5/3/2018 3:52 PM (GMT 0)
I know Tall Allen has quoted a 9-year study on SBRT and it's likely even been updated to 10 years by now. I'm sure he'll be along to provide specifics.

Although you have a lot of positive cores, the fact that they are all G6 and there's no evidence of extension means you have an excellent chance of a cure no matter what treatment you choose so I think you're on the right track by looking at potential side effects.

BTW, I was diagnosed about the same age as you and I heard a lot about how surgery was more appropriate for "younger guys." I sorta get that, but it also means that us younger guys have longer to live with the potential SEs.
Posted 5/3/2018 9:31 PM (GMT 0)
I think I recommended that you talk to Irving Kaplan at Beth Israel who certainly does offer SBRT. Beth Israel is part of the Harvard hospitals, so if your insurance pays for a consult at DF, they should also pay for Beth Israel.

Check the links in my signature for long term SBRT studies. The results are longer term and include more patients than all IMRT studies (save one very small IMRT study).
Posted 5/4/2018 2:14 AM (GMT 0)
If you dont enjoy sex, go ahead in get surgery.
Posted 5/4/2018 9:10 AM (GMT 0)
Have you considered HDR BT? It is a great treatment, easy to endure and little SEs. Denis
Posted 5/4/2018 12:05 PM (GMT 0)
When I was at Daner Farber I was told about the good work Dr. Kaplan is doing with SBRT. You are most fortunate to be close to these PCa experts. Good luck!
Posted 5/4/2018 2:29 PM (GMT 0)
I would get a second read on your slides, if you remain a 3+3 maybe you are a candidate for active surveillance at this point in time.
Posted 5/4/2018 6:17 PM (GMT 0)
Oldbeek, I enjoy sex. Still enjoying it from 2 weeks after my surgery. I say that to give a balanced view on surgery outcomes. I went for surgery resigning myself to the possibility that I might be impotent for life and incontinent. I think you need to be prepared for that. BUT ... and it a big BUT there are so many factors involved that can prevent these side effects from being long term. Its hard to get ourcome stats for specific ages but they are out there and the younger you are the better. You are in the younger category. One of the reasons I went for surgery has been mentioned. The younger you are the longer there is for it to progress.

1. Because I was G6 they went for nerve sparring.
2. The younger and healthier you are the better your chances of recovery of from the big 2.
3. Kegel exercises before and after surgery are crucial for continents recovery (start NOW just in case)
4.THE SKILL OF THE SURGEON.
5. If your over weight try and lose it. It helps during surgery. They've less to work around.

I didn't want to go radiation first because you cannot have surgery later. If you have surgery first you can still have radiation treatment later. I also didn't like the small chance that radiation treatment may cause cancer to develop elsewhere.... and listen guys I know its small I only raise it to explain ONE of the many reasons I chose surgery FIRST. I will take radiation treatment now in a heartbeat if I need it. To complicate things, taking the prostate out also has a small chance of spreading cancer cells but I would argue that its smaller than the chances of radiation doing that.

These are just some of MY REASONS however flawed they might be. I am not advocating any treatment and in another time, in another body, in another situation I may have chosen radiation first.

My experience with my surgery in March has been nothing but positive. Why... many reasons. Some stated above. Biggest reason? Who the hell knows, but if I had to guess... age and fitness with nerve sparring as a given.
Posted 5/5/2018 6:04 PM (GMT 0)

tomobrain said...
Really concerned on Sexual effects of surgery and how it will affect quality of life and seems SBRT is much better from that perspective..........................

hopefully will show in signature. not sure why it did not but biopsy
Gleason 3+3 in 10 locations on March biopsy
Mri showed currently contained
52 years old

DF said the numbers are still not there to prove SBRT for long term. Said it is a possibility they might go there in the future though - will do 20 or 40 sessions

If you are indeed "only" 3+3, contained, and DRE and PSA are not alarming(say PSA well under 10) then you are low risk. Depending on all of the details, you might well qualify to do NOTHING other than keep a close eye on it. If you do RP, RT or NOTHING, the odds of you ever dying of PC are extremely low. If you do nothing other than Active Surveillance(AS)- IOW watch it closely, and you should advance enough to need treatment later on, the odds even then of you dying from PC remain very low. The side effects of AS- assuming you are not the 1 in a hundred or 1000 who end up having mets despite your rosy initial diagnoses(compared to some), are zero. The SEs of RT seem to be pretty low, but they are certainly not zero. Surgery, you can get lucky and have no problems at all after some time healing, or it can be quite bad, and is for a significant %.

I think your choice of what not to do is self evident based on the 1st sentence that I have quoted from you above. But, people vary. If nothing else, you have LOTS of time to decide what you should do. Don't let ANYONE rush you into a decision on this, and research the various options, and their respective side effects(SEs) vs survival. But again, survival odds will be close to 100% no matter what you do.
Posted 5/5/2018 9:42 PM (GMT 0)

Dharmacolm said...
Oldbeek, I enjoy sex. Still enjoying it from 2 weeks after my surgery. I say that to give a balanced view on surgery outcomes. I went for surgery resigning myself to the possibility that I might be impotent for life and incontinent. I think you need to be prepared for that. BUT ... and it a big BUT there are so many factors involved that can prevent these side effects from being long term. Its hard to get ourcome stats for specific ages but they are out there and the younger you are the better. You are in the younger category. One of the reasons I went for surgery has been mentioned. The younger you are the longer there is for it to progress.

1. Because I was G6 they went for nerve sparring.
2. The younger and healthier you are the better your chances of recovery of from the big 2.
3. Kegel exercises before and after surgery are crucial for continents recovery (start NOW just in case)
4.THE SKILL OF THE SURGEON.
5. If your over weight try and lose it. It helps during surgery. They've less to work around.

I didn't want to go radiation first because you cannot have surgery later. If you have surgery first you can still have radiation treatment later. I also didn't like the small chance that radiation treatment may cause cancer to develop elsewhere.... and listen guys I know its small I only raise it to explain ONE of the many reasons I chose surgery FIRST. I will take radiation treatment now in a heartbeat if I need it. To complicate things, taking the prostate out also has a small chance of spreading cancer cells but I would argue that its smaller than the chances of radiation doing that.

These are just some of MY REASONS however flawed they might be. I am not advocating any treatment and in another time, in another body, in another situation I may have chosen radiation first.

My experience with my surgery in March has been nothing but positive. Why... many reasons. Some stated above. Biggest reason? Who the hell knows, but if I had to guess... age and fitness with nerve sparring as a given.

You go in for NERVE SPARING surgery and the doc finds cancer in the nerves, He has to TAKE THEM OUT ,LIKE IN MY CASE. M y uro was very skilled and could recognize the spread into the nerves, so he took them out.. I am glad it is all gone with negative margins, but using other methods the cancer could have been knocked down without ED. On the other hand it is nice to know he got it all(0.05 psa), but now I am dealing with an implant. It is not the same. The term NERVE SPARING is used to much and newbies need to know that.
Posted 5/5/2018 10:41 PM (GMT 0)
Point well made Oldbeek. I did say I went into the surgery accepting that I may be impotent and that its important to be prepared for this. I also said that because I was G6 they went for nerve sparring. I was not clear that I understood the point you make going into surgery.
Posted 5/6/2018 1:22 PM (GMT 0)
At least talk to SBRT and BT RO's before you make your decision then you can feel like you have covered the bases.

Roger
Posted 5/6/2018 7:28 PM (GMT 0)
My experience: Radical Prostatectomy, surgeon and I decided on nerve sparing. When he got inside he found cancer was extra-capsular, had invaded the vesicles & nerves on both sides, was also in the bladder neck and the urethra. When I awoke after surgery, I now have a permanent supra-pubic catheter (hose sticking out at my waist that attaches to a urine "belly" bag. Nerves are gone, and so are erections. My point is, the extent of the cancer will dictate what the surgeon does.
Posted 5/6/2018 10:08 PM (GMT 0)

RayO said...
My experience: Radical Prostatectomy, surgeon and I decided on nerve sparing. When he got inside he found cancer was extra-capsular, had invaded the vesicles & nerves on both sides, was also in the bladder neck and the urethra. When I awoke after surgery, I now have a permanent supra-pubic catheter (hose sticking out at my waist that attaches to a urine "belly" bag. Nerves are gone, and so are erections. My point is, the extent of the cancer will dictate what the surgeon does.

WOW, I got by easy. But you made my point. My URO was saying I may need Cialis after the nerve sparing RARP.
Posted 5/7/2018 1:06 AM (GMT 0)
I know how you are feeling tomobrain. I was diagnosed 4 weeks ago 54 years old psa 5.8, mri biopsy with 12 cores 1 came back positive at 5%. My Urologist wants me to have A PR, and radiation oncologist suggested brach.. Funny thing is my urologist said that brach should be A last choice and radiation oncologist says PR should be my last choice. How I love conflicting opinions. I am going to Memorial Sloan Kettering for A second opinion on 5/8/18.. I will decide what to do after. As of now I am thinking of AS.. Just recently I met 2 people who have been on AS. One of them was diagnosed at 47 and is now 62. As per his DR he will be staying on AS only change he has had is an increase in PSA.. The other person was diagnosed 7 years ago at 56 and will be deciding on A treatment as they have seen changes.
Posted 5/7/2018 1:31 AM (GMT 0)
knocker28...welcome to HealingWell. Sorry to hear about your diagnosis, but if you stick around here, hopefully we can help. You've certainly run across what post of us have done here: doctors tend to recommend their own speciality. I think it's good you're going to MSK. Also good that you're considering AS, although I don't know what your Gleason score is. Lots of good AS info here and if you start a thread about it, you'll hear from several AS guys. Good luck on your journey.
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