HealingWell
Search Close Search
☰

Newly diagnosed..and hoping for brachytherapy

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/27/2011 9:23 PM (GMT 0)
I am 45 and was just recently diagnosed on 11/17/11 with PC, after a routine physical led to an elevated PSA of 4.05 in September. My GP made a referall to a uro, and saw him in early Nov. He drew blood, and DRE indicated what he referred to as a "small knot". I was then scheduled for a 16 needle biopsy, which confirmed PC in 2 of the 12 needles, on the left side. Stated my Gleason score was 3+4, and my PSA had dropped to 3.67. He felt really comfortable saying he felt it was confined to the prostate, and had not metasized at all. He basically said all options were on the table, but that surgery and radiation were the best choices. We did request a 2nd opinion biopsy report through Bostwick, but haven't gotten that back yet.

After researching like a beast, I, quite frankly, am scared to death of having the surgery, even with DaVinci. I don't like all the statistics that I'll probably return to full continence, and I'll probably able to enjoy sex with my wife again after, maybe 24-36 months with the help of some type of impotence aid,..oh and the orgasm will be dry ! How in the hell does that supposed to work (..I know the mechanics, I am just frustrated). The cathether, etc ...ARRGGGGG !!!! I know all the positives for surgery, the final pathology, etc, etc, etc.

It seems that brachytherapy is the one that I'm most comfortable with at this point, as far as quliaty of life and being able to get back to normal life in as little time as possible. We have a meeting the the radiation oncologist on Dec 8th to discuss radiation options. I am hopeful that I am a candidate for this treatment. From everything I'm hearing its cure rate is as good as with surgery, plus less side effects.

I have been up and down from day to day on which treatment to pick. Second guessing myself, sleepless nights, etc.  I've went throught the gamut of emotions from initial shock, panic, and probably anger now. I am starting to think that if the radiation isn't an option, then to just let nature take its course and take my chances.

 

Post Edited (powellst) : 2/13/2012 2:42:01 PM (GMT-7)

Posted 11/27/2011 10:03 PM (GMT 0)
I hope the RO green lights you.
You are way too young and your Gleason is too high to be doing nothing.
You may have been hearing about over treatment etc, but that applies, if at all, to Gleason 6 cancers. You have a far more dangerous animal with your Gleason 7

Seeds, Cyberknife and HIFU are the treatments to be explored if you are looking to minimize SE's, but if anyone tells you they have a virtually zero rate, walk away, and find more honest advisors.
There are treatments with lower rates of SE's than surgery or standard beam radiation out there, but no zero or near zero rates.
Posted 11/27/2011 11:04 PM (GMT 0)
Brachytherapy is definitely something to consider, but if you are interested in minimizing side effects, you also need to take a good look at proton beam therapy. Minimal side effects is the main advantage of this mode of treatment.

Steve
Posted 11/27/2011 11:48 PM (GMT 0)
Im 41 and about 3 weeks post DaVinci. I can only tell you what I chose and how things are going. Overall, the surgery and recovery have been much easier than I expected. The catheter was minimally annoying and Ive had no incontinence issues. Even though I have yet to recover my potency (still with ED), I have enjoyed sex with a normal feeling and satisfying, albeit dry, orgasm.
My PSA was 6, gleason 4+5 =9, negative surgical margins and nodes negative.
Posted Yesterday 12:01 AM (GMT 0)
Most all of the patients on this forum that have chosen Brachy seem to be doing very well with little long term side effects. I'm three years out with no side effects. Just be sure you choose a doctor that has done at least 500 procedures as the skill of the doctor is very critical to a favorable outcome. You will have dry orgazms or one with very little seman, but they feel exactly like the ones you had prior to treatment.
Posted Yesterday 12:36 AM (GMT 0)
"Do nothing and take your chances" is really not an option.. Your chances are not very good without treatment..YOU decide on your treatment, not the doctors..They will perform what YOU decide...Your life is on the line here...If you must travel to get the treatment you want, then travel...If your prostate is too large for Brachytherapy, they can shrink it! There are treatment centers that specialize in doing seeds plus IGRT in a combined radiation treatment that is VERY effective. But don't expect your local doctors to recommend it if they don't perform the treatment you want!

It's your life and your money. Simple as that..But YOU will have to do the research, do the legwork, make the appointments....Have you sat down with a radiation oncologist and asked him what you can expect in the way of side-effects 10, 20, 30 years down the road? Will the "healthy tissue" that gets irradiated hold up for 20 or 30 more years? They have the answers to these questions..
Posted Yesterday 1:14 AM (GMT 0)
Thanks for the replies, guys...Keep them coming, please ! I'm going through a roller coaster of emotions , here. One day is fine, and I almost forget all about the PC, and then other days it's all I can think of. It invades my every thought. I'm trying to find out all I can, then think I'm getting too much information. It seems that everyone that wants to offer advice has had an RP (either open or DaVinci), and think I'm crazy for not wanting to have the surgery. Maybe I am.....then other things I read say that the radiation is just as successful in cure rates.
Posted Yesterday 9:25 AM (GMT 0)
For deciding on one type of treatment so soon is potentially closing the doors on other treatments

Do not be frustrated with surgery. The Catheter is no big deal at all, so please do not rule out surgery because of that silly thing. Making love can happen a few months after surgery with some Meds, not 2-3 years. Yes the orgasm is dry, means you do not have to be washing sheets anymore, unless of course you always leave that to your wife to do for you

How about a big positive, like being able to make love for hours on end now because now that you have dry orgasms you do not need a recovery time, yes you will be able to orgasm and keep going !!!

When looking at your treatment plans look at what is your Plan B if your Plan A fails. You are only 45 you need a plan B
Posted Yesterday 12:02 PM (GMT 0)
Welcome to the prostate cancer Twilight Zone it is strange than fiction and an episode you can barely believe is reality. Brachy is a good choice and less used, because most uro-docs have the market on surgery via training and schooling (they out number all other modalities for treating docs). John T and Tudpock and others herein have been there and done that and with nice results, lot less chance of incontinence and some other issues. But the many choices to consider are yours and only you walk the walk. Good luck to your plans, your numbers are reasonable for great expectations .

LOL- DaBrachy vs. DaVinci (Da decision is up to you)
Checkout info on IMRT & Brachy combo treatments also: www.dattoli.com www.rcog.com (just for info)
Posted Yesterday 1:12 PM (GMT 0)
Take some time and consider all your options. I know it is very tough digesting all the information (and tough dealing with being diagnosed). Good luck. Take your time and feel free to ask any questions here. You can read my journey by clicking on the link in my signature.
Posted Yesterday 7:11 PM (GMT 0)
 

Powellist,

First, you are not alone in your aversion to sugery.  I too am in the "avoid surgery" camp.  To me the SEs are too great a risk.  At this point, I follow AS, but if I ever do decide to undergo a treatment (I'm 49), it won't be sugery.

AS is a little easier decision for me as my stats fit the definition of an AS candidate to a tee.  Your slightly higher gleason makes it a more difficult decision for you, but your stats are still reltively low risk, you can take some time in making your decision, 6 months, a year, longer if the disease shows no progression.

It's important to realize that, no matter what, you are not just "doing nothing".  You know about the disease, you are educating yourself on options and you are actively monitoring it's progression.

BT, from my research, isn't a bad option for limiting the risk of SEs.  It's also possible you are a candidate for Targeted Focal Therapy (TFT) if the disease in confined to one side of the gland, this carries with it even less chance of SEs, but it's also somewhat unproven since, like HIFU and proton therapy, there isn't much history behind TFT yet.

What I've found is, the more promising a therapy is, in terms of low SEs, the more risk you are taking that it might not work long term.  Only you can decide how much risk you are willing to accept.  I'm OK with taking on significant risk, but that is wholly a personal choice, the only advice I can give on that is, don't listen to what others think of your choice, they aren't you, they don't have to live with the results, only you do.  I think the worst thing that can happen to any one is they make a treatment option that they really didn't want but bowed to outside pressure.  Then if it doesn't turn out great, the remorse is that much worse.  Take the time to figure out what you are comfortable doing.

Dave

Posted Yesterday 7:13 PM (GMT 0)
I am a Brachywife - my husband is six years out now and don't believe everything your hear about dry orgasms - I can attest to the "wet spot" being alive and well at my house LOL.  If you are looking for a step by step journey search my post "JustJulie's Brachytherapy Journey" - it has been locked so I cannot update it any further but my husband weighed all the odds, did not like the surgery odds and opted for Brachytherapy and has done very well with it.

If you have any questions, please post and the Brachy guys and gals will help you out the best we can.

 

Posted Yesterday 7:48 PM (GMT 0)
JustJulie (and others)...thank you for your replies..and JJ, I did look at your journey post...It was very much needed to be read by me. I had searched in vain for success stories published on Brachy, and just couldn't find alot. Even though being told that the expected results were as good as surgery, it seemed that there should be more out there on actual SE's, and personal experiences. It kept coming back to surgery, surgery, surgery. Obviously, if surgery WAS my only option, I'd do it with w/o remorse. But, I'm the guy who hates hospitals, from the very 1st surgery of tonsillectomy as a child. I'm running as far away from surgery as I can, if at all possible. I do think about the Plan B options, and hopefully my concerns will be addressed on Dec 8th, when we meet with the radiation oncologist.

Post Edited (powellst) : 2/13/2012 2:54:56 PM (GMT-7)

Posted Yesterday 10:11 PM (GMT 0)
Powelst,

Keep your surgery options open minded, do not close it out, it is an amazingly simple recovery I ( and many others here) did not need so much as a Tylenol after we got home

I can see already that Trimix therapy is already a no no for you
Posted Yesterday 10:36 PM (GMT 0)
Powellst,

If you want some new information go to The New Prostate Cancer Infolink and do a search on "Brachytherapy QOL" and you will find several studies comparing QOL of Brachy and surgery.

For an updated study on effectiveness do a google search of "Prostate Cancer Study Group Results" for a retrospective study comparing the cure rates of all the treatment options.

JohnT

Posted Yesterday 11:54 PM (GMT 0)

SkeeterZX22v said...
Brachytherapy is definitely something to consider, but if you are interested in minimizing side effects, you also need to take a good look at proton beam therapy. Minimal side effects is the main advantage of this mode of treatment.

Steve

or both as in my case.....
Posted Today 1:43 AM (GMT 0)
Dear powellst:

First of all, welcome to HW.  Sorry you have to be here but I'm sure you will find this is a good place for both information and support.  After JustJulie, I think I'm the brachy patient with the longest tenure here and you are welcome to view my longwinded "journey" by copying and pasting the link at the end of my signature.  Of course, my tenure doesn't give me any more clout than any of the other posters...just a longer period of time of a trouble free journey.

Here are some thoughts about your situation:

1.  Good idea to get a second opinion on the biopsy slides and Bostwick is one of the acknowledged experts in the field.

2.  I would recommend you continue to educate yourself on our disease.  HW is a great place with plenty of links.  Also, there are many books you can read on the subject.  One is Dr. Walsh's, "Guide to Surviving Prostate Cancer" which is chock full of info.  Dr. Walsh is a prominent surgeon from JH.  And, if you are thinking non-surgery, you might want to read Dr. Scholz' "Invasion of the Prostate Snatchers".  His co-writer is a bit "out-there" in my opinion, but the chapters written by Scholz (a top prostate oncologist) are well worth the price of admission.

3.  Your conclusion that brachytherapy cure rate is as good as surgery is supported by a number of long term studies.  Even on this site, which tends to have a majority of surgery patients, there are few who would argue with that conclusion after the studies posted here in the past (particularly by JohnT).

4.  Your conclusions about quality of life are also supported by the data.  The urinary side effects from brachy are some short term frequency and urgency.  From surgery they are incontinence that may be short or long term.  The sexual side effects from surgery are about a 50% chance of lasting ED, while the ED from brachy is more like 35% and generally occurs after a couple of years if at all. 

5.  In addition to the QOL info quoted by JT, I would suggest you Google "New England Journal of Medicine Quality of LIfe Study".  There you will see some eye opening comparisons favoring brachytherapy.

6.  The main reasons someone with your stats might not qualify for brachy are (a) extra-large prostate (which can be shrunk with HT), pre-existing urinary problems (they will give you a questionnaire to determine this) or (c) with a palpable tumor and G7 they MAY recommend IMRT along with the brachy.

7.  Don't be alarmed by those who suggest you have surgery so that you can "save" radiation for a backup plan.  I find that to be a bogus argument for a couple of reasons, (a) if radiation works as a "backup" why not have it first  and do it right the first time and (b) there are salvage treatments after failed brachytherapy that are just as effective as salvage radiation after failed surgery.

8.  Dry orgasm is possible but not necessarily definte with brachy.  JT evidently has it; JustJulie's hubby does not, nor do I.  I have about 50% less liquid (so it appears - not measured!) but it feels exactly the same.  Also there are other less publicized SE's of surgery such as ejaculating urine and shortening of the penis that you should consider but not all urologists will mention.

As you can probably tell, I am pro-getting-educated but also pro-brachytherapy.  But, then again, why wouldn't I be.  I researched the heck out of this when making my choice and valued QOL. And I now sit here pretty much the same as if this cancer never happened and only think about it when I come back to this site to support old friends or help new ones.

Good luck and please keep us posted,

Tudpock (Jim)

Posted Today 7:13 PM (GMT 0)
powellst, like you, I researched statistics.  I looked at DVD's and got several second opinions.  I sought out the best oncologist in my area and asked for his personal observations as far as recurrence and quality of life issues. He gave me all the information he had, then guided me to several prostate surgeons and urologists.

I found that statistically the brachytherapy showed better chances of recovery from side effects, i.e. impotence and incontenence, but the numbers were slightly tainted since most men opting for brachytherapy were overall younger and therefore expected to recover more quickly and regain sexual function.  They had more of a chance to regain these because they had a higher quality of them than older men to begin with.  For radical surgery there was a lot of variance in percentages of regaining control from side effects. Most of the variances rested with experience of the surgeon.  It depended on how many he'd performed, and the hospital where he practiced. In fact, the experience of the surgeon is the main factor with the outcome. The more he performed, the better his patients did. 

Deciding what to do is very stressful.  It's a huge decision that can't be taken lightly.  And it's actually a lot of work researching and deciding which treatment option is right for you.  Everyone is different.  After much research, and at my age I realized that overall statistics for recovery back to " almost normal" were about the same for radiation, brachytherapy, or radical robotic prostatectomy.  (37%, 42% and 35% respectively) The only thing that significantly increased my chances of a more positive outcome was the experience of the surgeon.  I thought it over, and having worked in the space program for many years, cruching numbers, and evaluating risks, I sought out the best-of-the-best surgeon.  I had to pass a few tests before meeting with him to make sure I was a candidate for surgery.  Then I sat down and had a long discussion with him.  I frankly asked him what his personal success rates were for his patients for regaining contenence and sexual function.  His rate was 98% for contenence and 94% for regaining ability for sexual intercourse, but sometimes ED aids were employed. His stats were tremendously higher than statistical averages collected by the AMA.   He had performed over 4000 radical nerve sparing prostatectamies in his career and had been doing it for over 25 years.  All things considered. I chose the Nerve sparing DeVinci Robotic radical prostatectomy.   If I had been a few years younger I may have opted for brachytherapy. If I had been a few years older and I would have opted for radiation.  My surgeon didn't try to persuade me toward any specific option, he just gave me honest answers and let me decide what was right for me.

I'm almost 4 weeks post op from Divinci surgery, still dribbling quite a bit during the day, but I am seeing signs of improvement as far as contenence. I'm finally dry at night now.  Even Junior has shown a couple of signs of life, so I'm hopeful things will eventually stand up on their own, so-to-speak.  It's all part of the drill, and I have to be patient.  One thing in my favor: Unlike other treatments, the radical nerve sparing prostatectomy doesn't tend to have side effects that degrade or tend to get worse after 2 years.  The surgery may not always leave you perfect, but what you've got after you heal for a year is usually what you keep. To me, that means a lot.

Anyway, I wish you the best with the the brachytherapy.   If it's the right decision you'll know it, just go for it and never look back.   best regards, hjs

Posted Today 8:12 PM (GMT 0)
Herman, I'm glad you are pleased with your decision to have surgery.  However, I will take issue with one of the points you made re the age of patients undergoing the various procedures.  Actually, most head-to-head QOL studies that I have seen show that the average brachytherapy patient is actually OLDER than the average surgery patient...unlike the statistics you quoted.  This makes sense in a lot of ways because quite often an older man may be unable to undergo the rigors of surgery while the less invasive brachytherapy is a possibility.

Specifically, if you look at the 2008 study, "Quality of Life and Satisfaction with Outcome among Prostate Cancer Survivors", as published in the New England Journal of Medicine, there is some interesting data that is both age related and protocol related.  This study aimed at identifying how around 2000 PCa patients and spouses/partners felt about QOL.  The study related problems two years post-procedure to give time for radiation related issues to occur and create a level playing field.  The median age of the surgery participants was 59 while the median age of the brachy participants was 65.  Speaking specifically of the ED issue, the sexual satisfaction score for nerve-sparing surgery patients fell from a baseline (pre-procedure) of 80 to a two year score of 43, i.e. a 46% decline.  For non-nerve sparing surgery the drop was even more severe...a 60% decline in sexual satisfaction score.  For the OLDER brachytherapy patients, the sexual satisfaction score dropped from a basesline (pre-procedure) of 67 to a two year score of 45, i.e. a 23% decline.  Looking at ED percentages only, 12% of the surgery patients had an "overall sexuality problem" pre-procedure and that jumped  to 43% at two years post procedure.  On the other hand, 18 % of the OLDER brachy men had an "overall sexuality problem" pre-procedure and that rose to 30% after two years.

Since you are a statistics driven guy, I thought you might be interested in the facts.  And the fact is that, on average, the sexual QOL with brachytherapy is better than with surgery.  That doesn't apply to every man or every situation but it is clear that many, many studies bear this out and it is NOT because brachy patients are younger.  It is specific to the treatment selected.

Tudpock (Jim)

Posted Today 8:48 PM (GMT 0)
Powellst,

As you have learned by now, most posters here have a bias toward their choice of treatment. You will rarely see a post that admits to treatment remorse. I am no different. I am biased toward BT/IGRT for all the reasons pointed out by Tudpock above. Like you, I really did not want to have surgery due to QOL issues that I learned about on this site as well as from some conversations with people I was able to talk to. During my decision making period in late 2009, Tudpock's post made me take a closer look at BT. That is what I chose to do and have been very happy with the outcome to this point.

I want to be clear that surgery is a viable option for you and many men have very satisfied outcomes. In the end it comes down to what you are the most comforable with. I predict you will make the right decision for yourself.

Regards,

Joe
Posted Today 9:02 PM (GMT 0)
Tudpock18, I've only posted twice and assumed the forum is to encourage and lift up those dealing with this disease. Thanks for giving me the "Facts" but the thread isn't mine. Why don't you encourage powwellst instead of spouting off statistics for my sake. I'm not going to take issue with anyone sincerely posting to offer their experience and offering their encouragement. All I shared was my experience and what I learned. I have nothing to prove and no one to impress, sorry if you take isssue. wishing you the best.
Posted Today 10:12 PM (GMT 0)
Herman, sorry if I offended you...that was certainly not my intent.  You are right about the use of the site for encouragement and I try to do my part on that front.  As you hopefully spend more time here you will find that education and making sure people have correct information is another important part of what happens here. As one of the few brachytherapy patients who post here, it is important to me that the brachytherapy "facts" are presently accurately.  The threads are read by many readers who may or may not post and when I spot an inaccuracy I try my best to gently correct it...as many of us do...so whomever reads the thread has the right info.  That is entirely different from opinions, of which there are many and few correct answers.  But facts are facts and should be presently accurately.

Again, sorry if my correction offended you but I tend to be pretty straightforward.

By the way, I thought your advice about finding an excellent and experienced doctor was right on the mark and many studies point that out as well.  Somehow I missed your original posting when you first arrived so I'm remiss in not welcoming you aboard sooner.  One thing that might be of interest to many on this forum is your story and you might consider starting that in another thread if you have not already.  Particularly with your age, low Gleason, low PSA, low cores and low % why you chose active treatment rather than active surveillance.  Again, perhaps you already covered that and, if so, my apologies and maybe you can just re-direct me to that thread.

Continuing recovery and good health to you,

Tudpock (Jim)

Posted 11/30/2011 12:31 PM (GMT 0)
MrGimpy,

Can you explain your comment about the Trimix? I'm not sure how it fits in with the brachytherapy...

thanks
Posted 11/30/2011 2:12 PM (GMT 0)
It fits in with the phobias you mentioned.

Trimix falls into one of the future treatment plans if you have ED, Plan B if you will
✚ New Topic ✚ Reply