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Proton Therapy vs. Nerve Sparing/Removal of Prostate

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Posted 9/17/2008 8:51 PM (GMT 0)

Hello all, I am new here and have been lurking about trying to get information about prostate cancer and treatment (forgive me if I sound ignorant, I am still learning!). My dad recently told my family that he has been diagnosed with prostate cancer. He is only 55 but His PSA levels have always been fairly high according to what I've been told (my mom once told me due to a larger prostate?). When I first heard about his PSA levels prolly about 3-4 years back, I believe they were around 3.8. In the last two years they rose from 4.2-6.1. He had a biopsy in May '08 and sure enough, it has been determined he has cancer in 25% of his prostate. I'm not sure about his Gleason score...I think it might be a 6--I know it is not anywhere near 10 (he mentioned that his doctor told him that this was when it would be critical for him to have treatment?). His doctor recommended DaVinci but he is concerned with side effects (such as impotence and incontinence) and thinks his doctor may be leading him down that road only b/c it is his specialty and what he does to treat prostate cancer. He has done much research in the last several months and is now thinking about Proton Therapy due to the low incidence of side effects and the non-invasive aspect of the procedure. The problem is his current insurance will not cover costs so he is waiting until October for open enrollement to switch to a different insurance plan and then in January says he will have treatment (I am very concerned about the waiting around and have voiced my concerns to him...should I be so concerned?). He says he does not want to rush into anything, he wants to have the facts and I do think that is important; however, I'm wondering if Proton Therapy is really the best option for him. He has three close relatives who have had prostate cancer. With such an extensive history of prostate cancer in his family, it would seem to me there is a good chance that this is a genetic issue that is not going to go away. If he does undergo Proton Therapy I am concerned that the cancer will come back and then I wonder what are his options? From what I gathered on proton bob, options are somewhat limited after Proton Therapy. Is there a recommended age for Proton Therapy? Would he be better off at such a young age, only just now being diagnosed with prostate cancer and having such an extensive family history, undergoing something like nerve-sparing (with the hope that side effects would be more limited) and then if it recurs, trying something else like Proton Therapy? Because of his family history I feel like it makes more sense to remove the prostate completely rather than leave it and take the chance of it coming back (I read the statistic that there is a 40% chance of return). I am concerned that his judgement is clouded because he is so overly concerned with side effects like incontinence and impotence. I want to support his decision for Proton Therapy but I feel uneasy about it after some of the things I have read.

I appreciate any advice or wisdom anyone can give me.

Thanks!

Post Edited (daughterto1) : 9/24/2008 10:27:34 PM (GMT-6)

Posted 9/17/2008 10:48 PM (GMT 0)
It is his call, but at 59 years old and 6 months post op, I am fully continent and potent, (with assistance of Cialis.) Potency is a real concern for any man. The sooner it is taken care of the better the chances of a favorable outcome. Best of luck to you and your dad.

Posted 9/17/2008 10:51 PM (GMT 0)
The ultimate decision will be your dad's -- only he can weigh up the risks and benefits as they apply to him. But you can help him as you are now by gathering the data to help him make the decision.

If his Gleason score is 6, his cancer is slow growing, and he will do no harm by waiting until January for Proton treatment if that is the course he decides.

Incontinence and ED are common side effects of surgery. But not everybody has them, and many have them for a time and then recover. I had surgery, had no incontinence but do have ED -- to be expected after non-nerve-sparing surgery.

With a Gleason of 6, your Dad would probably have nerve-sparing surgery -- and that would give a better than 50% chance of recovering potency. ED is not the end of everything -- there are therapies that work in many cases. I use injections and they work well for me.

All the best for whatever treatment you decide.
Posted 9/18/2008 5:07 PM (GMT 0)
  chas i to had robotic surgery in rochester ny dr joseph , what a class act his surgery team is . idid well , all good news on pathology, im 7 weeks out i still use about 5 to 7 pads a day but am dry at nite , do u think this is norm ty lemon lime . tongue
Posted 9/18/2008 5:10 PM (GMT 0)
sorry ment to post this first , it is up to your dad he probably will do fine every 1 is different , but i think they get your hopes up 4 a quicker recovery than actually happens . i am 48 yrs old  and had robotic surgery at rochester ny wilmot cancer center brand new center , excellent stafff . good luck 2 u both lemon lime smurf
Posted 9/18/2008 5:37 PM (GMT 0)
Thank you for each of your responses. I really appreciate it. I'm just trying to learn all I can so I can help my dad as much as possible make an informed decision. I know ultimately he will make his own choice but I want to help him be as informed as possible before going for treatment! Again, does anybody know whether Proton Therapy would be better for an older man who has already gone though prostate removal? Like I said, with his younger age, family history, and the availibility of fewer options after Proton Therapy, I am concerned that if the cancer comes back, he will not have as many choices if he goes with Proton Therapy first.

Thanks again...
Posted 9/18/2008 5:40 PM (GMT 0)
Also, thanks to Chas for the tip on the proton therapy waiting list. I will double check with my dad to make sure he is on it. I had no idea there was a waiting list and he hasn't mentioned it to me either.
Posted 9/18/2008 6:38 PM (GMT 0)
Hi daugher,
I would encourage you to read my question "between radiation and surgery" on page 11. Not because I am so smart, but because of all the comments furnished as a result from others. This was written prior to my decision. I have heard that proton theraphy is great, but you should help your dad look at all sides before making a decision.

In my reasoning - it may just be my mental makeup, but I wanted to know if the cancer was confined to the prostate. The only way to be able to do that with any conciseness is from the pathology once it is removed. Secondly, I wanted it out of my body - maybe that is silly, but with me it was important. Finally, I also wanted to reserve radiation as a backup if surgery failed. As far as side affects from surgery - they are real, but liveable - interestingly enough the side effects of surgery are generally worse at first (not always so but generally), but improve with time. The opposite seems to be generally true with radiation. The side affects appear in at least some to be better at first but get worse in time.

This is just my reasoning - others have their own very reasoned ideas from other directions and that is what makes this forum so valuable. Besides, every persons diagnosis is a little different, etc.. I wish you well!
RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04
Posted 9/19/2008 4:53 AM (GMT 0)
RB...thanks for the post. I read your thread and it was very informative! It answered many questions I had and cleared up some confusion for me. What was said sure made a lot of sense to me.

Thanks again and best wishes.
Posted 9/19/2008 3:43 PM (GMT 0)
Contrary to the above I too had a cousin do brachytherapy 11 years ago. he swears by it and the only effect he claims is at times urgent urination. I would've likely gone that route too if I hadn't lucked upon a clinical tft study here. There are those who have had surgery that have had the cancer return too. No treatment is guaranteed not to. For a few here ED problems are a primary concern post treatment, for me and other incontinence was more worrisome. The choice of treatments have many personal variables your dad must take into account.
Posted 3/27/2009 1:05 PM (GMT 0)
Daughter,
Of course above all other things, it's your dad's ultimate choice. It's his body and his cancer. Must be nice to have such an informed daughter.

With a gleason 6, waiting a few more months for a particular treatment shouldn't pose a high risk, not unless his urologist thinks differently.

With the stats you post for your father, I would be more inclined to go for surgery, and if he prefers the robotic, then go for that. There's a good chance with his stats that the PC is contained to the prostate, and surgery could and should rid him of it.

In the rare event it were to come back in the future, then he would have a full range of radiation options to make a second pass on his prostate bed, minus his prostate of course.

With the surgical approach, the post surgery pathology results will pretty well determine fully the event and spread, if any, of the cancer, as well as the other bits and pieces they will remove.

That is my take on his situation. I am also assuming at his young age, he is well enough in other medical matters to undergo treatment or surgery without complications.

I wish him, and you, the best, and hope he can come to terms in his final choice of treatment. While starting out with a gleason 6 is good, as far as having prostate cancer goes, it is still cancer, and whether it grows slow or fast, it is still growing everyday in his body.

David in SC
Posted 3/27/2009 4:52 PM (GMT 0)
The thought as I understand it was because of my health and age surgery was the first consideration with the option of other therapies if ( in my case it was ) needed I underwent Proton 17 months after having surgery ( shocking but available to me ) Good luck and God Bless
Posted 3/27/2009 10:07 PM (GMT 0)

mjr...i see that you did have davinci done at 55 and you say you then had to have proton therapy at 57. that is wonderful that was available to you at that point but i'm sorry to hear the cancer returned. with davinci they remove the entire prostate, right?? may i ask you...did the cancer spread outside the prostate and that is why you had to have proton therapy? if you could go back and do it all over again, would you have had davinci first or would you have went with a different method?

just an update on my dad...i am happy to report he is doing really really well!! he decided against proton therapy after weighing all the options. he did go to the clinic in Indianapolis and spoke with the doctors there...he really liked the staff and doctors. but he also spoke with a doctor about davinci and then another doctor about the nerve sparing method with total prostate removal. he also spoke with a radiologist to make sure he wasn't waiting too long. i felt like once we got the ball rolling he was really able to come to terms with everything and make a very informed decision. i am really proud of him for taking all the right steps to get on the right track.

In the end he chose total prostate removal with the nerve sparing method. Dr. William Catalona did the surgery at Northwestern in Chicago, IL. Catalona is a wonderful doctor who is very cutting edge...he actually is the one who developed PSA testing. He's been in the game for a long time and knows his stuff. My dad really liked him and felt very comfortable with him...he can't say enough great things about him. We also know others who have gone with this method of treatment and used Catalona and had wonderful results. I think my dad chose this method (over pt) in the end because he came to the conclusion that although proton therapy is known for great results, he is the type of guy that would prolly worry himself sick with not knowing whether the cancer was truly gone and the possibility of return. he decided he wanted the assurance of knowing that the cancer was gone, and there was no chance of cancer coming back to the prostate since it was gone. plus the assurance of a doctor who was able to physically remove the cancer and check everything out to be sure that he got it all. on top of all of that, Catalona was able to spare the nerves around the prostate which hopefully helps to regain functions quicker and easier as well as minimizing side effects of impotence and incontinence. 

he had surgery january 12, so he did wait over 6 months before getting treatment; however, the lab results came back and lymph nodes were clear, cancer was confined to prostate, cancer in 25% of prostate, slight invasion of perineal (which they said is normal), gleason score of 3 (much lower than the biopsy score of 6). Although I did not like how long he waited to do something I am glad he took the time to decide on the best treatment for him. He's told me that had he not researched everything so thoroughly, he might have always wondered (or regretted making the wrong choice).

Posted 3/27/2009 11:21 PM (GMT 0)
I think your father made a wise choice. I am glad he's well on the recovery side of his surgery, and also glad his post surgery gleason was much lower, these are all good things. I wish him a good recovery, and hopefully he won't have a hard time with his side affects resulting from the surgery. Give him my best.

David in SC
Posted 3/28/2009 4:06 AM (GMT 0)
Thank you David, I appreciate your kindness and support...and you have my best wishes as well!! :-)
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