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Any personal comments on radiation seeds vs. surgery?

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Posted 1/27/2007 3:16 PM (GMT 0)
This is my first posting.  My husband was recently diagnosed (Nov. 06) with prostate cancer.  A visit with the urologist regarding the choices to treat were helpful, concerning, and confusing.  My husband is worried about the quality of life (erectile disfunction & incontinence) following surgery or insertion of radiation seeds.  We live in a metro area where we have top notch medical doctors and have been told that these "side effects" from either course of treatment are "temporary". We decided to check some PC forums to find if this is really true.  But, after reading several postings, it sounds like it can be long term, if not permanent.  Thus, my husband is having second thoughts regarding treatment at this time because it has been diagnosed "early" and he thinks he has time on his side.  EEK!!  I am struggling with his stubborness and am looking for some words of encouragement that might help persuade him to take this seriously and get treatment.  Any positive results from seeds or robotic surgery would be helpful.  Many thanks.

Concerned Spouse

PSA 7.5

Gleason (3, 3) 6

2 of 12 cores (5%)

Age: 53

 

Posted 1/27/2007 3:21 PM (GMT 0)
Hi concerned,

I am sorry to hear about your husband's recent PC diagnosis. This is a very scary time for you. Hang in there.

Yes, you do have time to research and consider your options. Taking a month or two or three probably won't hurt anything. However, doing nothing is probably not a good idea, particularly at age 53. Although a Gleason 6 means that your husband has a mid-grade (and probably slower growing) cancer, it will grow if ignored for many years.

Your exact questions (surgery vs. radiation) has been asked at least two or three times in other threads in January. If you look over other threads you will find a lot of helpful information. I will take a look and try to give you the name of some of these threads to make it easier for you to page down and find them.

Good luck

Ben
Posted 1/27/2007 3:37 PM (GMT 0)
Hi again concerned,

TREATMENT OPTIONS: Here are two recent threads that you might find useful on the topic of treatment options:

SEEKING BEST TREATMENT OPTION AND BEST PROVIDER

SURGERY OR RADIATION?

If you have any trouble finding them, you can sort the threads by TOPIC. I would also suggest that you read many postings from the last month or so. It will take you a number of hours but there is a lot of good information on different treatment options and on side effects.


SIDE EFFECTS: The two most common side effects are incontinence and ED. Yes they are terrifically frustrating and disturbing. Anyone who tells you otherwise is kidding themselves. However, please consider this:

#1: FIRST SURVIVE: If you are dead, you aren't going to be worrying about urinating or sex.

Most of the time the side effects do resolve themselves. I can primarily speak about recovering from surgery:


#2: INCONTINENCE: I think that about 98% of surgery patients recover urinary control. Some are fortunate and have urinary control as soon as their catheter is removed. More likely it will take about three months (but in some cases it can take a year.) If you do not regain urinary control after a year (this is unusual - 2% I think), there are surgeries that can be done to install a valve and give you urinary control. No fun but better than nothing.



#3: IMPOTENCE: I think that about 95% of surgery patients recover sexual function back to approximately where they were to begin with. This can take some time because the two nerves that control erection are badly bruised by surgery. It can take many months and even up to a year to recover the ability to get an erection. Some are lucky and have erections much more quickly. If you do not regain sexual function, there are pumps, pills (like viagra), injections, and as a last resort even penile implants.



There is a lot of information about incontinence and impotence on this forum. Skim various threads and thoroughly read the ones that interest you.



I think that radiation is different with little immediate effect on urinary control or sexual function but you can have problems later. Your urologist or just general research should help you compare the odds of the side effects under the different treatment options. I am not expert on radiation. JetGuy has done a lot of posts about radiation on this forum. I would suggest that you read some of his posts.

#4: Do the side effects suck? You bet. If anyone ever gives me the phone number of the complaint department, I am going to give the person who answers a real chewing out. Unfortunately, we can only play the hand that we are dealt in life. None of us wants PC. Tell your husband that PC is one of the most curable cancers if caught early and your husband has caught it early. Focus on that right now. Deal with the side effects later.

I would also suggest that you acquire and read two books: Guide to Surviving Prostate Cancer by Dr. Patrick Walsh and The Complete Guide to Overcoming Prostate Cancer, Prostatitis, and BPH by Dr. Peter Scardino. Both are available on this site (I think), at Amazon.com, probably at a large bookstore, and probably at your local library. Buy them. Read them. They are both excellent.



Take some time. Do research on your condition and your options. Evaluate your treatment options. Pick a treatment. Get cured. Recover from the side effects.

A year from now, most of this will be behind you and you will likely be cured, recovered from incontinence, and mostly (maybe entirely) recovered from ED.



One other piece of advice. Your outcome, particuarly in terms of side effects is heavily influenced by the skill of the surgeron, oncologist, or whatever medical professional is treating you. Carefully research this person and pick the best one that is reasonably available to you. Get someone who has done your exact type of treatment many, many, many times.

All my best,
Ben
Posted 1/27/2007 3:51 PM (GMT 0)
Ben, many thanks for the prompt replies.  This is very helpful (and encouraging).  We will take time later in the day and read through the threads you outlined.  Hope your post-op is going well....Sincerely, Concerned

 

Posted 1/27/2007 3:58 PM (GMT 0)
Hey Concerned,

Sorry you have to be here but this is a great forum for information and support. We have all been where you are and understand the pain of a diagnosis. This is the darkest hour. Learning and sharing your experience with others will ease the pain.

We have people here that have had all different kinds of treatments and experienced all kinds of results. Please stay with us...

Jim
Posted 1/27/2007 4:00 PM (GMT 0)
Concerned,

You are welcome. Good luck.

By the way, don't be put off by my statistics and particularly my positive margins. That is unusual, particularly with a lower Gleason score like your husband's. He is not likely to have positive margins. Despite my positive margins, and despite my continued battle with incontinence and impotence, if I were repeating all this I would still have the surgery.

JetGuy has posted a lot of information about radiation treatment so you might want to read over his postings as well.

It will help you a lot to have found this forum so early in the process. I didn't find it until two months after my surgery.


Get your husband to read some of these postings. If he isn't a computer person, print them out for him. I know that for me, lack of control over the cancer and the side effects has been a great frustration. Perhaps that is a "guy" thing or maybe it is just me. In any case, your husband should find control where he can such as in doing research and selecting the treatment option. That was helpful for me.



I am going to shut up now and let some other people give you their opinions and thoughts. That is part of the power of this forum. You get access to a lot of people who have each become very expert on PC and especially on our particular treatment path.

All my best to you both,
Ben
Posted 1/27/2007 4:11 PM (GMT 0)
Dear Concerned Spouse:

I recognize your husband's dilemma.  I had a similar path report, although my PSA was 4.9.  I was 50 at time of diagnosis, and had monitored the situation and underwent a total of four biopsies during the previous eight years while experiencing PSA readings of four to five.  When the first positive path report came in, I was somewhat prepared on what I was going to do having had a few years to ponder what I anticipated as my ultimate destiny.

I know men who underwent both forms of treatment, seeds and surgery.  I have a friend who is an oncologist specializing in prostate research at a major cancer center.  I consulted with him quite a bit.  While the decision you ultimately make is personal, excellent results can be had going both ways.  At least that's what I was told by the men who went through both forms of treatment.  The main reason for those who chose seeds was the side-effects of surgery so often discussed in the literature:  incontinence and ED.  On the flip side is the enhanced opportunity for a complete cure of cancer if the prostate is removed before the cancer escapes the capsule.

A man with a projected life span of greater than 15 years has a big decision to make.  I discovered if you choose the surgery route, the risk of permanent incontinence and ED is decreased if you find an experienced, highly credentialed urologic surgeon who has a proven track record.  I ultimately chose the surgery route and traveled via air for surgery with a renowned urologist who has performed at least a couple thousand or more prostatectomies. Surgery was this past August.  I was blessed by the surgeon's skill and the grace of God:  I had very little continence issues; was pad free four weeks after catheter removal;  negative post-surgery path report; PSA <0.1 three months post surgery; at work (desk job) 12 days post-surgery for two-three hours per day the first week, half-days the second week, 3/4 days the third week, and full time the fourth week.  Back to my running regimine six weeks post surgery and going seven miles in 1:05 hours after seven weeks.  ED issues getting better each week/month with medication (viagra) assistance.  I have no follow-up treatment other than a yearly PSA.  I have something like a 5% chance the cancer will reappear during the next 15 years according to Hopkins research.  I'll take that percentage any day!

I hope my experience gives you and your husband some guidance as he/you make your decision on treatment.

 

Posted 1/27/2007 5:12 PM (GMT 0)
Hi Concerned

I too was confused and wondered what to do. At first I was sure I would do seed implants and radation and then after more research and discussions with folks based on my age and condition I went for surgery. I am just 17 days post op and just 3 days post catheter, I had to have the catheter replaced once after I experienced problems. the three days have gone pretty well only 1 pad for the day but experiencing some pretty red urine. What came just natural for me I now have to concentrate so hard on now to move around and not leak. In the last few days leading up to my surgery I questioned myself if I should do anything and just change my ways and keep it under control but like my doctor told me the one thing that would not change is the fact the biopsy confirmed I had Pc and that would never change, I had it. So on I went with my treatment of surgery and after getting the pathology report back it turned out to be a very good report with my cancer capsule contained, they also did find that my cancer was advanced more then the biopsy had indicated and they found some much more agressive cells then originally thought. Had I done nothing now he told me 2 or 3 years from now the outcome could have been much harder to predict and deal with, who knows how far things could have spread. So while I have many days in front of me to get over new hurdles every day I know in my heart that I did the right thing and I will learn to deal with a little different life style or in time maybe I get lucky and things get back close to normal. It may not but at least I have the chance vs trading in a couple more good years for bad results later. I was 48 when diagnosed and had the surgery, I have since just had my birthday and am now 49 and looking forward to many more of them. The decision on what treatment option is strickley a personal one in which your husband and you feel comfortable. My wife and me sat and talked about it and were in agreement of what we thought was best and would work as a team to deal with everything as they came up.
I wish you luck in what ever treatment option you decide but once decided go full stream ahead with conviction of a better life and always find way to keep some humor. Also good friends that understand always help, I thought I could push on no matter what and when I had my set back and had to have the catheter put back it was the first time I became a little depressed, of course it didn't help that two days later it was my birthday and that my wish was for a good pathology report and the catheter would be gone and I was doing well with those side effects. When it didn't work out that way I was down. We have a very good friend who is an RN who came over and I broke down that it wasn't supposed to work this way, she helped me put the big picture back, the pathology report was good and so I had to spend a few more days with the catheter was a minor set back. I feel as though I am trading a few weeks or even months of ups and downs for chance to have another 35 years which the doctor told me is the outlook for a guy like me. For the record I am doing pretty good now and the 2nd catheter removal advature.
Good luck and in the end this group will be there for you. I am new to this board but I have already seen how caring a group this is.
norskie
Posted 1/27/2007 5:26 PM (GMT 0)
Concerned Spouse,

Boy, the guys so far have given you very good information. I commend them for the details especially Ben. As a spouse you should first know that with your husband's staging, which I assume is T1c, then his prostate cancer is curable since it is at such an early stage. As already mentioned you have months to do research and make a decision although those will be trying months. While it has been caught early the concerns are always where is it at in the prostate. The needle biopsy really cannot tell you for sure as prostate cancer tends to be multi foci or have more then one tumor. If one of these is near the surface of the prostate then over time it can get out.

Those of us that chose surgery did so primarily because it was the only way to know for sure that the cancer was totally confined to the prostate and if it was not we would know that follow up treatment with radiation was an option. Radiation can be as effective as surgery but the only way you know over time is that the PSA will have to be constantly checked and if it goes back up then surgery is generally not an option due to the damage done to the pelvic tissue where the prostate is located by the radiation. There are other treatments such as hormone and/or chemo but those come with some tough side effects. Even with radiation there is risk of incontinence and impotence.

As Ben mentioned incontinence following surgery is very temporary. Impotence also is temporary but may take a couple of years to come back normally but there are interventions that allow a good healthy sex life. The priority in any treatment is to seek out a very experienced provider and check out others. Get second and even third opinions. Watch out for local providers unless you live in a large city that has recognized specialist.

If you have not already gone there look at www.yananow.net. When you enter the site click on mentor experiences and scroll down. These are stories of men that have or did have prostate cancer. They are listed by type of treatment. There are some tough stories here so be prepared although most of these are of men that had advanced prostate cancer.

Good luck and stay with us through the journey.

Tamu
Posted 1/27/2007 7:18 PM (GMT 0)
Dear Concerned,

I echo all that the previous posts have said, especially about purchasing those books. I too was concerned about which treatment to choose, due to the small level in my original biopsy. Reading this forum regulary and Dr. Walsh's book really helped my wife and me make my treatment decision. Two thoughts from his book: prostate cancer is multifocal - it just doesn't start at one place and spread, but possibly many. I equated my biopsy to throwing darts at a target. You don't hit every number with 10 darts, and you don't get the whole prostate diagnosed unless you pull it out. Second, without treatment, it will grow, and when contained in the prostate is curable. Once it gets outside, then you have many difficult issues.

I'm 7 days post operative, due to getting my catheder out Tuesday and final pathology report. Am I a bit anxious about regaining my contenence? You bet! However, I prepared by getting into better shape prior to surgery and doing my Kegal exercises, so I'm confident this will just be another hurdle to leap. One of my big anxiety issues was this catheder, and so far, while being a nusance, hasn't been as bad as anticipated. My morning walk was about 3/4 of a mile and I'm shooting for more.

Again, good luck at coming up with a treatment option.
Posted 1/27/2007 8:07 PM (GMT 0)
Concerned Spouse & Loved Ones,


A “Special” Warm Welcome to You!

I know we can “all” make Your Journey smoother just by being here for you!

This is truly a great forum!!! ~ you’ve joined. You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey with you!



It helps “all of us” ~ to help you ~ if we know where you are on your path.

So ~ Please stay with us and take our hand when you need it! Keep posting.... OKAY!!

We are all here to help you travel the path with prostate cancer.
Posted 1/27/2007 8:35 PM (GMT 0)
Dear Concerned Spouse

Your husband is lucky that he has a concerned spouse! The responses to your message are excellent and I agree with the majority of the solid advice given. I want to add another dimension to your husband's consideration for treatment (i.e., proton radiation therapy). This form of therapy should not be dismissed. I certainly understand that younger prostate cancer patients often feel that surgery is the best approach because it gives them immediate satisfaction that the cancer has been removed from their body and their PSA should drop to 0. However, even with surgery there is not a 100% guarantee that the cancer will not recur. While one responder to your message indicated a 90% range for potential recovery from incontinence and impotence after surgery, I think he vastly overstated the reality. I do believe that younger men have a greater chance of restoring their continence and potency, but it isn't guaranteed. Each patient has to weigh all of the risk/rewards of each treatment, and it truly is a game of chance as to where you will really end up. I am going to repeat a recent posting below which you will hopefully find useful in your husband's search for an appropriate treatment that fits his stage of PC.

Good luck to your husband and to you too!

Dave

https://www.healingwell.com/community/default.aspx?f=35&m=709462&g=709962#m709962

After extensive research and networking, i decided on Proton Therapy which will begin soon. My two choices were robotic surgery with one of the top surgeons and Proton Therapy with one of the top radiation oncologists. After much thought and considering my age (notwithstanding that I am still healthy and youthful in many respects), I decided against surgery because I didn't want to take the risk of almost certain impotence (possibly permanent at my age) and possibly total or some degree of incontinence. If I were substantially younger, I might well have elected robotic surgery. I met with a top medical oncologist and the conclusion was that the chances of a potential cure were about the same for surgery, radiation and brachytherapy (seed implants), but the potential negative side effects vary greatly among the various treatments. Quality of life is very important to me--I would rather live fewer years and live them well without having to deal with treatment side effects that make life miserable. I concluded that Proton Therapy offers as good a chance of success as surgery (the supposed gold standard) with the potential for little or no negative side effects short and longer term. It is true with radiation therapy that longer term side effects may occur, especially some form of impotence. However, I believe with radiation therapy, viagra and other similar pills can overcome impotence in many cases which is not always true with surgery. The problem with brachytherapy is the potential for some nasty urinary problems (e.g., strictures of the urethra making is impossible or difficult to urinate without some medical procedures). IMRT photon (x-ray) therapy is the most sophisticated type of x-ray radiation today, but not as safe as proton radiation. Proton radiation enters and leaves the body at a low dose and the high dose is directed to the cancerous area; x-ray radiation enters and leaves the body at the full dose. It has more potential for damaging good tissue surrounding the prostate. I believe that IMRT x-ray radiation has the potential for greater negative side effects than proton radiation. It is true that with radiation therapy (either proton or photon), it will take up to two or more years for the PSA to get to its lowest level compared to surgery where the PSA goes to zero immediately. It is true with surgery that it makes future radiation treatments possible if the cancer recurs. It is not necessarily true that the prostate cannot be removed if the cancer recurs after radiation therapy if the cancer has not escaped the prostate capsule. Some surgeons just refuse to do the surgery, but surgeons at such top hospital as Sloan-Kettering in Manhattan have removed the prostate after radiation therapy if the cancer recurs, depending on the circumstances.

You might also want to visit these websites:

http://www.mskcc.org/mskcc/html/10088.cfm

http://jco.highwire.org/cgi/content/full/21/21/3979

The first website relates to Prostate Nomograms developed by Sloan-Kettering in New York City. You can input various information relating to your stage of cancer (i.e., PSA, Gleason Score, Tumor Stage based on DRE, etc.). The end result will give you 5-year progression free probability statistics comparing radical prostatectomy, external beam radiation therapy and branchytherapy.

The second website is an interesting study, again comparing the success rates of the various prostate cancer treatments and related side effects.

Keep in mind that EBRT (external beam radiation therapy) is an older form of radiation therapy and IMRT is the most sophisticated form of photon (x-ray) radiation today with the potential for fewer negative side effects. This should be taken into consideration when evaluating this data.

I suggest that you visit these websites for more information on Proton Therapy if you have not already done so.

http://www.protonbob.com/proton-treatment-homepage.asp

http://www.proton-therapy.org/

http://www.oncolink.com/treatment/article.cfm?c=9&s=70&id=211

Good luck to you in your decision--let us know what you decide.
Posted 1/27/2007 10:40 PM (GMT 0)
Wow, I am just amazed at all the positive comments and good information I have received from so many of you in just one day!  Thanks so much to all of you for your suggested resources, personal insights, and first hand experience with PC.  We have a great deal of homework to do before making the right choice but knowing that we now have a support group behind us (and are not alone) certainly will help us in our journey.  I wish you all well in your post op recovery and will stay posted regarding our progress.   Thanks again everybody....you guys are great!!

Christy

Posted 1/27/2007 11:15 PM (GMT 0)
Please read JustJulie's wonderful post on her husband's radiation seeds.

I suggest that you read pcdave's post carefully. Then Google IMRT and IGRT and proton beam. IGRT is an advanced form of IMRT.

Both surgery and radiation offer excellent results and unpleasant side effects.

Best to you and your husband.

Bill
Posted 1/28/2007 12:13 AM (GMT 0)
Christy-

It's nice to hear everyone's story, and I'll tell you mine, too. However, it's just a crapshoot, and I'll tell you why.

I was diagnosed exactly two years ago at age 61, PSA 26.5 & Gleason 7 (4+3). I was, and still am, 40 pounds overweight and horribly out of shape. I was started on Zoladex and Casodex immediately, and, in fact, just finsihed my 2 year course of ADT 2 weeks ago. I opted for 5 weeks of external beam radiation and then HDR brachytherapy (look it up).

My side effects from all of that are not being able to sleep more than 15 or 20 minutes at a time all night long unless I take a sleeping pill (and then no problem), very mild, infrequent, hot flashes and mild constipation. Through it all I never leaked one drop of urine and suffered no erectile dysfunction. Given my numbers you'd think I'd be a prime candidate for all those "horrible" side effects many speak of. Go figure.

To quote a line from Fats Waller, "One never knows, do one?"

-Gordy
Posted 1/28/2007 12:45 AM (GMT 0)
Hello Concerned

I was where you were about 1 month ago, what to do? I posted simular posts and got a wealth of information.
A few things I read in the many books listed above in this thread:
You have time, reasearch your options.
If it feels wrong IT IS, if it feels right, then it probably IS.
Having in form of thearapy where you kill the prostate gland to kill the cancer within, there are two problems in my mind:
1. You do not know whether or not all the cancer was killed as oposed to knowing whether it was all removed by doing the post op biopsy,
2. Radiation, HIFU, and other simular forms of treatment leaves scar tissue.
The entire area is scar tissue, witch means that removal is no longer an option that most surgion will consider.
Therefore by having it removed, I know where I stand, and if for any reason I need radiation it is still an option. I'm young also 49, and I want to hang around a very long time, I also want to be contience, and potient.
Good luck, get to work,and make this the biggest priority, to help gather the information, In the end the ultimate decision will be your Husbands, You cannot know what it means to us Men to have our significant others right there beside us, reseaching, reading, buying books for us to read. Doing whatever you can do helps more than you will ever know.
I recomend Dr Peter Scardinos book.
Posted 1/28/2007 3:49 AM (GMT 0)
Hi JWH

At your young age of 49 I think you have made the wise decision to have robotic surgery. Also, you are having surgery by one of the best surgeons you can find. Younger men seem to do much better with surgery and the risk of impotence and incontinence are substantially less, especially in a early stage of PC. I almost had surgery with Dr. Tewari at NY-Presbyterian Hospital, but decided against it considering my age and the greater potential for impotence and incontinence side effects. Dr. Menon and Dr. Tweari worked closely together at the Henry Ford Hospital before Dr. Tewari moved to NY-Presbyterian to implement and head up their robotic surgery a few years ago. Dr. Tewari is also top notch and highly respected. Good Luck to you!

Dave
Posted 1/29/2012 1:07 AM (GMT 0)
Hello Concerned,
This is my first post too. I'm 74 and made the Da Vinci decision. I'm at 8 weeks since surgery at Mission Hospital in Mission Viejo, CA and very happy with my decision. I researched my options thoroughly and am happy with my decision. I'm continent at night and improving my daytime leaks. No ED. Feel great. I agree with pcdave, get a young, experienced and proven surgeon.

My dad died in 1969 of brain cancer that had metastasized from prostate cancer. That was terrible and made my decision easier, even at my age. Good luck!
Posted 1/29/2012 3:02 AM (GMT 0)
With a similar diagnosis I had brachytherapy on June 20, 2011. I have practically no side effect and my PSA has already dropped drastically. Take your to decide on a treatment. Surgery usually leads to some side effects.  Get proper statistics from reliable sources before  deciding on anything. With a diagnosis your husband has, you can take your time.
Posted 1/29/2012 3:29 AM (GMT 0)
Although this thread appears to be from yesterday, it actually dates back to 2007. There have been some issues on the board with very old posts coming up as "yesterday".

I'm going to lock this, not because there is a problem with the content, but because of the real date of the original posts. I don't want members to think they are conversing with these apparently "new" folks in real time.

(It looks like the date issue has cleared up today, but I'll leave this locked. New questions deserve a new thread. - 142)

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