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Young man just diagnosed weighing brachytherapy or da Vinci surgery

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Posted 12/11/2012 9:09 PM (GMT 0)
Hello all.

I'm sure this topic has been beat to death but I'm recently diagnosed (two weeks ago).

46 years old.

PSA 5.34 Apparently four years ago it was 3.99.
Gleason 3+3=6

Cancer in five of the 12 biopsies. Two on the left (20% and 40%), three on the right (5%, 40%, and 60%).

Bone scan came back fine.

MRI ordered but can't be done for a month.

I've done a ton of research online and honestly this forum has been the best resource I've found.

I'm considering of course either brachytherapy or the da Vinci.

But so much I'm seeing out there tends to be geared toward the older man.

So I have a couple of questions.

First is about ED.

For several years I've taken Cialis, as I had a moderate ED problem already. Not severe. Was able to achieve erection without it, but not always and didn't always last. Good part of the problem was low sex drive (to the point that I thought I had low testosterone). But the Cialis works well for me.

I'm seeing a lot out there saying that surgery has a pretty terrible ED side effect, and that brachytherapy does not. At least initially, but that five or ten years out men start showing it, and that some theorize it's because the radiation slowly seeps into the nerves.

But the studies on the subject that I've seen all seem to be primarily older men. I'm wondering if that could be because of advancing age.

In short I'm starting to feel like I have a more mature man's disease, and that the studies are all geared toward assuming you are first diagnosed much older than I am.

Second, the risk of secondary cancer from the radiation. Reports on this seem to be all over the place. Again I'm wondering if that's a factor of age. I'm hearing that it's about 1%, and it manifests quite a few years later? I'm wondering if that's traceable just to the radiation or a factor of age.

Third, I'm seeing conflicting reports about the 'salvage' surgery necessary if you have radiation and later the cancer comes back. Is it really terrible or is that overstated?

So many of the things I'm finding out there are dated. For instance, the data my health plan Kaiser has on their website is from studies done in 2007. That seems awfully dated to me (but of course admittedly I'm sortof a novice here).

Last, does anyone know sites where you can find out more info on urologists and oncologists? Specifically how many surgeries or radiations they have done? Weirdly my health care provider (Kaiser) is very mealy-mouthed about that.
Posted 12/11/2012 9:33 PM (GMT 0)
Hello, Aachen.  Welcome to HW...sorry you have to be here, especially at such a young age but I'm sure you will find this is a good place for both support and advice.  I'm a brachytherapy guy and you can see my "journey" by copying and pasting from my signature.  To specifically address your questions:

1.  The ED effect with surgery does tend to be worse than with brachytherapy.  As a young man and if you have nerve sparing surgery with an experienced doctor your chances of ED decrease.  Nevertheless, the odds are better with brachy.  It is true that any ED with brachy shows up later rather than sooner.  However, any sexual side effects from brachy are likely to show up by the two year mark post-procedure.  In other words, where you are at two years is likely to be where you stay...not counting the effects of getting older, of course.  I recommend that you Google "New England Journal of Medicine Quality of LIfe Study Prostate Cancer" for some perspective.

2.  There is a risk of secondary cancer with brachytherapy just as there is a risk of dying on the table with surgery and getting hit by lightning.  My advice is to focus on the likely side effects rather than the unlikely edges of the curve.

3.  I believe salvage surgery after a failed brachytherapy is problematical and it take a real expert to get it right.  Personally, if my brachy ever fails I will not do a salvage surgery.  However, what many surgeons fail to tell you is that there are treatments available for a failed brachy that are every bit as effective as radiation after a failed surgery.  They include re-seeding with a different isotope, HDR if you have had LDR, HIFU and cyrosurgery.  My advice is to focus on the primary treatment and its effectiveness and side effects, not any salvage issues.

4.  If you read Dr. Scholz, "Invasion of the Prostate Snatchers" you will find a summary of experienced prostate oncologists at the end of the book.  It does not give individual statistics.  This is a quandry for all of us who have to choose a treatment, i.e. getting real facts on the doctors.  If you share you location on this site I assure you that you will get references if you wnat them.  What you MUST do, IMHO, is choose a physician who is highly experienced, i.e. has done hundreds of procedures.

Good luck and please keep us informed as you progress.

Jim

Posted 12/11/2012 9:46 PM (GMT 0)
Hello again. Glad to see you back. yes the subject has been beaten to death here but it's new to you so we'd be happy to help and beat it up again for you. ;)

Others will chime in soon but here's the real problem you're going to face: choosing which treatment. with your numbers either surgery or radiation will likely do the same thing just with different side effects happening over different time scales. I have a feeling it's going to personal choice based on how you feel about the odds and possible side effects. I'll stress the word 'possible' You can never know for sure what SE will manifest themselves. I had beam radiation and have had few of the possible side effects mentioned by my RO - no extra limbs or third eye yet.

If you've already got some ED, treatment isn't going to help and might be less affected by radiation but it's really difficult (was going to say 'hard' but that seems wrong here) to say for sure before hand. In either case you're going to have more of a loss there and will likely need more pills or the shots to fix it.

Yes, it's most of the studies focus on the more, mature, members but PC is PC and the only problem with the studies is that they often only look 5 to 10 years in the future when us, "kids" can expect to have 20-30 years left.

Have you read any of the books out there, like Dr. Walsh's "Surviving Prostate Cancer"? Might be a good place to start. There are other good books to that I hope other will mention for you. There's a good one on ED but I forget the title at the moment along with a couple of other websites.

I would worry too much about the possibility of secondary cancers from the radiation - the first level side effects are bad enough.

While there is the possibility that a first treatment will fail, in your place I wouldn't consider that too much. Your numbers are low enough that there is a very good chance you'll only need one treatment. With either radiation or surgery as your first treatment you have plenty of options for a secondary treatment.

One last thought - did you have a conversation with your doctor about active surveillance? Your numbers put you in the range what there might be a possibility.

All the best,
Andrew
Posted 12/11/2012 9:50 PM (GMT 0)
Aachen,

You came to the right place to get your answers. Either surgery or Brachy would work well; each has its advantages and disadvantages which you should become familiar with before making a choice. Get an opinion from an experienced surgeon and Brachytherapist.

This is a comparitive of the outcomes of different treatment options:

http://prostate-cancer.org/PDFs/Is14-2_p3-11.pdf

To answer your other questions:

There is a lot of data on secondary cancers: Brachytherapy has a zero rate of secondary cancers at 20 years, IMRT has a 0.5% rate and these are compared to surgical patients not to the population at large which is a valid comparison. You can search "secondary cancers" on the New Prostate Infolink for the various studies.

The question of salvage surgery after a failed radiation is a "red herring" arguement. Salvage surgery is not recommended, because of it's morbidity and is seldom used anymore. The most common treatments for a failed radiation is reseeding with a different isotope, cyberknife, cryosurgery and HDR brachy. All have the same effectiveness as salvage radiation after a failed surgery.

The advantages of surgery are for a young man the side effects have a much better chance of not being permanant. You also get a post op pathology and spotting a reoccurrance is easier.

The advantages of Brachy is that it is a 1 hour procedure and you can return to work in 2 days compared to a 2-4 day hospital stay and a couple of months recovery for surgery. Incontinance rates are near zero. Immediate complications from a Brachy procedure are zero with no record of anyone requiring a hospital stay. Complications from surgery are more common and include 1% death at 30 days from complications or infection.

The various qulaity of life studies conducted indicate that Brachy patients are much more satisfied with their ongoing QOL than radiation or surgical patients.

Review the recent posts on how surgery and radiation affected the members of this forum.

Regarding ED: if you now have some ED then both of the treatments will make it worse. You should discuss this at length with your doctors.

Many more will be chiming in with their take on your situation. Hope we can address all of your questions. As you noticed I'm biased towards Brachy, because I and many others on this board have had great results with few or any side effects from this treatment.

JohnT

Posted 12/11/2012 9:52 PM (GMT 0)
InTheShop:

Yep, already read Dr. Walsh's book. Taught me a lot. But I did feel it was a bit dated, in that certainly in the last few years more research has been done, particularly I would think on brachytherapy.

Particularly since it's my gut feeling that brachytherapy hasn't been recommended for guys in my age group for that long (could be wrong about that).

One interesting side effect is my willingness to talk about ED. Never in a million years before this would I have admitted to another guy that the Lil General may not alway be good to go.

Active surveillance - I plan to bring that up in my consult tomorrow. He seemed from the very beginning to be pushing me toward surgery, so I suspect he won't be in favor of it. I do plan on getting a second and maybe third opinion on everything related to the diagnosis.
Posted 12/11/2012 10:11 PM (GMT 0)
"In my opinion" with your case, Robotic Surgery or Proton.

Both treatments should seek the best place and person as reasonably possible.

It is "in my opinion" protons passing through the body is "possibly" less damaging than other types of radiation.  This is only an educated guess.  The body is comprised mostly of protons.

All things being the same and no issues, ED will "possibly" be your biggest side effect hurdle.

Posted 12/11/2012 10:59 PM (GMT 0)
aachen,

did you read the latest version of the Walsh book? the 3rd revision was just released a few months ago, and much of the info has been update.

sounds like you are already really researching very well, that's the way to do it. the hints to get a good qualified 2nd opinion is very sound.

all treatments come with risks, and no doctor can guarantee any particular outcomes. the stories here at HW PC, pretty well show the full spectrum of results.

i agree with Tud's comments above entirely, good advice. Salvage surgery is almost never done, so I wouldn't look at that as a feasible alternative to failed radiation. Many surgeons won't even perform it, because it is very problematic at best. even my own very experienced surgeon, said after helping on a salavage surgery when he was in medical school, he knew he would never perform one in his own practice, and he never has to this day. the chances of leaving the patient with perm and total incontinence and ED is very high, and the chances of doing anal wall damage is also very high.

keep on doing what you are doing. learn, research, study hard, ask a million questions. you will not get a second chance with a primary treatment choice. so as we say, study hard, choose wisely, hope for the best.

please keep us well posted on your journey, we are here for you

david
Posted 12/12/2012 2:20 AM (GMT 0)

Aachen said...
InTheShop:
One interesting side effect is my willingness to talk about ED. Never in a million years before this would I have admitted to another guy that the Lil General may not alway be good to go.

Understand completely. I had some ED as a result of blood pressure meds a few years back. My wife encouraged me to ask the doctor about it. Odd but that conversation happened right after I changed to a new primary care doctor. Yup, the new doc was a woman and my wife went along to the first appointment with me.

That took a bit of adjustment to sit with two ladies and talk about Mr. Happy.

It all worked out, got my BP meds changed and it all ended up good. Although I am have a little trouble 9 months after IGRT. My Uro said if it gets worse he'd prescribe something. So far it isn't that bad.

I looked up the book I read on ED - it was: "Saving Your Sex Life A Guide for Men with Prostate Cancer" by John Mulhall. It might be something you should check out.
Posted 12/12/2012 3:03 PM (GMT 0)
Aachen:

I would talk to a radiation oncologist at a CyberKnife Center. 5 high dose treatments, one a day for 5 days. Get all the info, you can before making a decision. Ck is not the same as traditional radiation treatment.

Good luck on your journey.
Posted 12/12/2012 6:40 PM (GMT 0)

Aachen said...
Hello all.

I'm sure this topic has been beat to death but I'm recently diagnosed (two weeks ago).

46 years old.

 Aachen,

I had my brachytherapy done last year as primary treatment @ 45 years old. It was done in January, so I can relate to your young age. I looked at all the options very carefully, and spoke to my uro and RO about both procedures. Neither was pushed on me, but clearly my uro preferred me to choose RP, but after reviewing all the options, I just didn't like all the side effects that came along with surgery. Brachy offerred, for me, as good (or better cure rate) as surgery and the least invasive option and low S/E profile.

So far, the treatment is going according to plan and I couldn't be happier with brachy as my treatment.

Both JohnT and Tudpock18 provided some excellent information. If you would like to chat offline my email is in my profile.

Good luck in whatever option you chose.

Bob

PowellSt

Posted 12/12/2012 8:09 PM (GMT 0)
Hello Aachen, and I will also welcome you. Lots of good information already provided; I'll try to add to that.

Our PSA history is remarkably similar, and our biopsy results are not that far off although I had more core samples come back 'bad.' I would also recommend that you get a 2nd read on your slides - Epstein and Bostwick are two of the best labs in the U.S. Regarding your other stats, my stage is T1C, I didn't see yours? Also what is your prostate size and volume? While our ages are a bit different I've been blessed (up until the PCa Dx. . .) with very good health, to the point my PCF considers me 10 years "younger" than my biological age. I only mention this to say that I can relate. . .

So then I went on an absolute mission to study this disease and the treatment options - as well as the results post treatment including progression free as well as all of the SE's. This included spending lots of time here at HW, internet research to the point of "paralysis by analysis", and also of course meeting with a number of medical professionals in the different practices. In addition to Walsh's book I would also highly recommend "Invasion Of The Prostate Snacher's" by Scholz and Blum.


I can also relate to what I now refer to as the "perception" that at a younger age surgery is 'better.' Looking back at that point in my journey I remember talking to the head of urology at a major medical facility in the midwest - one of the acknowledged "best" this part of the U.S. has to offer. After our consultation he recommended surgery (and only open because it is his belief that a surgeon's feel trumps a robotic approach - he only does open so imagine that). When I asked him why he stated "because at your young age and excellent physical condition you have better odds at handling the surgery as well as a better chance at the side effects." My counter to that was, "and at my young age and health if I don't beat the SE's then I'm looking at living a long life in hell." Of course he didn't appreciate that. . .

By the way let me stop here and say that while I chose LDR Brachy, that doesn't mean I endorse it unilaterally across the board. I may come across that way as I am an advocate of this treatment because of my research and where I'm at - HOWEVER, each of us is different, there are no guarantees with ANY of the treatments, and it is an incredibly personal decision - likely the biggest one we each will have to make.

You mentioned that much of the available information is dated; JohnT provided an excellent link to more current and long term data. I have a similar report just published earlier this year that I purchased and would be happy to send a PDF copy to you; can't provide a link to it because it has to be purchased, however their "terms and conditions" allow me to share this for those that have been DX'd. Shoot an e-mail my way and I'll reply.

With respect to SE's - in addition to what the various treatments may potentially cause, as others have stated no treatment will make current conditions better; in your case with ED best case is it stays the same, worst case is it gets worse - for me that made looking at the post treatment statistics even more crucial. Yes, go after the cancer first - but SE's are not that distant of a 2nd place for me. . .

You also asked about sites where you can find out more info on urologists and oncologists - I am not aware of any - however my approach was to ask each and everyone I talked to for their personal treatment statistics. They all have them, and if they tell you they don't or won't share this with you then I would say that's a big red flag warning. Also push them to define their statistics - stats can be presented a number of ways and it is important to understand the baselines. For instance, "continent" to them may be "only one pad per day" or "only when straining" - when to you and I it means NO issues.

My very best to you as you move along this path; we're all out here to help as much or as little as you'd like - same approach I would suggest you use as you talk to the medical professionals - be your own advocate and don't be afraid to challenge.

Posted 12/12/2012 8:44 PM (GMT 0)
I just didn't like all the side effects that came along with surgery. Brachy offerred, for me, as good (or better cure rate) as surgery and the least invasive option and low S/E profile.
So far, the treatment is going according to plan and I couldn't be happier with brachy as my treatment.

Ditto for me. I couldn't have said it better.
Posted 12/12/2012 11:01 PM (GMT 0)
I agree that seeds offers a better prospectus, especially for immediate side effects. I was 56 at Dx, and having worked with some of the people who first commercialized seeds back in the 80's, I was all about trying it. But I was told I was too far along (too much involvement). I eventually decided on surgery. Once the post-op path came back, RT was scheduled immediately. I'm not willing to look back, since there is nothing to be gained by wondering if I made the "right" decision. That will be a big thing to come to grips with. I often suggest that new guys research even the absurd suggestions, just so that they know why they didn't pick those options.

I think Tud did a good first summary for you, although I don't like the "Invasion" book. It seems a bit of scare tactics stirred in with fact. If you can separate the two, it works.

Posted 12/13/2012 1:00 AM (GMT 0)
http://nomograms.mskcc.org/Prostate/PreTreatment.aspx

You can us the Sloan & Kettering namogram, put your stats in and

toggle between brach & surgery.  Progression free stats start

at 5 years.

Most if not all responders are below the radar including myself.

Posted 12/13/2012 2:24 AM (GMT 0)
Aachen, welcome, but also condolences. I was 50 when dx. 11 yrs ago, surgery was not as refined and seeds were just coming into use.
I chose surgery for the options if, surgery didn't work. My choices if, we're chemo, radiation and HT.

There are many more options now. What you need to way is your family history. Anyone die, I had 3 uncles from 54 to 62, so that is why surgery.

I have ED and found pills and injections did not work well for me. I am using VED. I did not need anything prior to surgery.

I was 11 yrs ago, so the guys on here with treatment in past several years will have better perspective of what works now.
Good luck, Tom. West central. Ohio
Posted 12/13/2012 4:24 AM (GMT 0)
Why is surgery more often considered in younger men, then say brachy or external beam?
Posted 12/13/2012 1:35 PM (GMT 0)
Squirm - not sure what others may say/think, but from my post above this is my input:

I can also relate to what I now refer to as the "perception" that at a younger age surgery is 'better.' Looking back at that point in my journey I remember talking to the head of urology at a major medical facility in the midwest - one of the acknowledged "best" this part of the U.S. has to offer. After our consultation he recommended surgery (and only open because it is his belief that a surgeon's feel trumps a robotic approach - he only does open so imagine that). When I asked him why he stated "because at your young age and excellent physical condition you have better odds at handling the surgery as well as a better chance at the side effects." My counter to that was, "and at my young age and health if I don't beat the SE's then I'm looking at living a long life in hell." Of course he didn't appreciate that. . .
Posted 12/13/2012 1:54 PM (GMT 0)
@Squirm - my understanding is that Brachy and RT are probabilistic approaches. if the radiation from the beam or seeds blankets/saturates each affected PCa Cell, and causes enough damage to kill it or keep it from spreading, then you get a complete cure. if you impact less than 100% of the PCa cells, you have an opening for future problem. The longer you live with partially or untreated PCa cells, the more chance for bad things to happen. if you are older the short clock is in your favor. The younger you are the more time for bad cells to go wild, i.e. time works against you.

Surgery attempts to remove all the cells, if they have not yet broken through the prostate to the outside, you have a better theoretical chance at a complete cure.

I'm not sure how significant the different approaches are in cure rates.
Posted 12/13/2012 3:10 PM (GMT 0)
Squirm:

Sfigato gave part of the answer at least according to the conventional wisdom (which the brachy guys will indignantly reject). The other part is the effect of the radiation on the non-cancerous cells. Radiation doesn't know cancer from healthy tissue. It simply damages the DNA in all the cells. The cancer cells, happily, are the most susceptible and they gradually die. If enough of them are damaged so that they cannot recover as a population then the cancer is 'cured'. But that leaves quite a bit of previously-normal cells in the treatment periphery that have damaged nuclei. Mostly these damaged cells don't cause a lot of trouble, at least statistically. In the first year after treatment, maybe one or two guys in 100 will develop some sort of radiation-related problems. Not so bad compared to the immediate side effects of surgery. In the second year the radiation guys will have another one or two in 100 and the surgery guys are starting to heal. But still the rate of side effects in the radiation cohort is still less. Third year a few more... Eventually, according to the theory, the lines cross and you are better off having had the surgery and recovered from it. Same cancer control but fewer genetically compromised cells to cause trouble down the line.

If you are treating a man who is in his 70s and has a ten year life expectancy then radiation sounds good -- fewer immediate side effects, good cure rates, and even if enough cancer is left to cause recurrence five or ten years out those five or ten years are a big chunk of the remaining life expectancy. Similarly, the radiological side effects that pop up with a one or two percent per year rate simply don't have the time to affect the odds much.

But if you have a younger patient with a thirty five year life expectancy and you introduce a permanent risk of some radiological side-effect with a statistical probability at 2% a year then that patient has a 50% risk of experiencing that side effect at some time.

1.0-0.98^35 = 0.507
Posted 12/13/2012 3:51 PM (GMT 0)
Because I don't want to hijack this thread I'll stay on the sidelines, respectfully disagreeing with a few of the recent posts that are against radiation. But then again I am one of the "Brachy guys" and am basing that on my own research and the studies and reports that report the actual statistics, including over 15 years of data on % progression free as well as SE's. As I stated in my original post to Aachen I also do not want to push my own decision on treatment too much on others as it is such an individualistic and life-altering decision. (I've probably already pushed too much! (:

Aachen please realize that each of us posts what we do because we do care about those of you that are new to this darn beast; sometimes our passion gets through, but it's all good and should all be weighed accordingly.
Posted 12/13/2012 6:55 PM (GMT 0)
I think that many of the longer term effects of radiation are holdovers from the era of 2BRT or wide area radiation and low doses. There were long term issues associated with this type of treatment and it was only recommended for older patients who could not withstand surgery.
The newer forms of Brachy are much more precise and since the radiation only extends 1mm from the seed the external damage is significantly reduced. Normal tissues that have been radiated are fallow, which means that future PC cannot grow.
In published studies by Dattoli with 14 year data on high risk patients found:
81% cure at 14 years using 0.2 psa as the standard.
Risk of failure was 1% after 5 years.
All failures were systemic and not local as confirmed by biopsies.
PAP was the strongest predictor of failure, followed by Gleason and PSA.
Posted 12/14/2012 2:13 PM (GMT 0)
Aachen,

You have gotten some very good advice for most of the treatment options at your disposal.

I was 61 when diagnosed with a large G7 PC tumor and looked at many option but unfortunately I did not find this forum until I was looking for answers to my severe ED. I used Viagra for 4 years before surgery and my URO told to expect to have severe ED even if my nerves were pared which they were. My first choice for treatment was proton RT but the closest treatment center was over 300 miles away and my insurance would not cover the cost as they still consider this as experimental. I also could not be away from my business for the 6 to 8 weeks of daily PBRT. I also looked at seeds and one of the best PC seed clinics I could find was in Atlanta and again my insurance would not cover this clinic as it was out of my network. I live in Alabama and the local RT clinics did not IMO have sufficient PC experience. I chose to have Da Vinci RP surgery and so far I  got the out come I expected. I am fully continent and have an undetectable PSA after 18 months, which was my primary goal. My loving wife told me that dead men do not have sex. The ED isn't getting any better but my wife and I have a successful sex like with the aid of Trimix injections.

The good news is that you have plenty of time to look at all of your options and do not let anyone or any doctor try to rush you into a treatment that you are not 100% comfortable with. There is only going to be one right treatment decision for you and that will be the one you choose as you are the one who will live with that decision.

Terry

Posted 12/14/2012 4:45 PM (GMT 0)
Aachen,
I was diagnosed at 37years old, operated on at 38. I agree that you have ED issues with any of the treatments you choose. I went with the radical nerve sparing which was at the time the best choice for me. Whatever you choose--you can't look back. I have ED problems now, I can live with it as I have undetectable PSA tests. It is always a tradeoff. Do your research and make a choice you can live with.

All the best.
Posted 12/15/2012 3:07 PM (GMT 0)
It is always a tradeoff. Do your research and make a choice you can live with.

I agree with the research part. After doing a considerable amount of research myself, I concluded that I was fortunate (as many are) of having multiple options to successfully treat the disease. My focus then shifted to the one that offered me the best opportunity to continue my lifestyle as it was prior to my dx. I didn't want any 'tradeoff'. No one knows what happens in the future, but so far, I couldn't be happier with my choice of brachy.

Several books have been mentioned. I'd like to add one that helped me a great deal: Surviving Prostate Cancer Without Surgery by Bradley Hennenfent.
God Bless.
Posted 12/15/2012 6:55 PM (GMT 0)
Aachen, of course you should continue to do your research and make the decision with which you are most comfortable. Unfortunately, the Internet is full of ridiculous statements posing as facts such as Peterdisabled's conclusions about brachytherapy and what happens with the radiation.

So, I would just caution you to listen to some of the wiser heads on this forum, e.g. JohnT, who deals in facts and not idle mischaracterizations.

Good luck with your decision.

Jim
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