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Posted 8/22/2012 12:24 PM (GMT -5)
My husband was diagnosed with PC two weeks ago. We have started to look for a treatment and a doctor. My husband is a "just get it out" guy. We have met with 2 surgeons and have appointments to meet with 2 radiologists. The surgeons that we met with are top NYC surgeons at the best hospitals and have great reputations.

Surgeon number one has done about 3500 robotic prostatectomies. He was an impressive, genuine person. He did not push surgery, but tried to get to know us on a personal level. He said that my husband had about a 90% chance of being cancer free, 90% no incontinence, and 90% no ED. But it all depends on what he finds when he does the surgery. When I asked him what he meant by no ED he said that it is hard to quantify. Although my husband is a G6, he said that there is a good chance that there is some G7 in there. He takes samples of lymph nodes.

Surgeon number two was also very impressive. He was intellectually brilliant and was the first person to explain all of our options and my husband's status in a completely clear way. He said that as a G6 my husband was considered low risk, although he had a high volume of cancer. He said that my husband has a 30% chance of having some G7 cancer in his prostate. He said that my husband could either do surgery or radiation. He would do robotic over open surgery because the healing time is faster and there is less blood. He would not take samples of lymph nodes unless he saw something alarming in the prostate. He is a doctor that has done about 3000 open surgeries and about 1000 robotic surgeries. He felt that surgery has advantages over radiation because of my husband's age. There is radiation as a backup if surgery fails, and my husband is young enough that a secondary cancer caused by radiation might be a factor. He said that while radiation would get rid of any existing cancer, my husband would still have a prostate and a new cancer could form there.

He said that my husband had a 96% chance of being cancer free after surgery, a very good chance of being continent, and as for ED a a 50% to 80% chance of regaining 80% of his current function.

Both surgeons indicated that with surgery the ED is immediate and with radiation it develops over time but both procedures end up in the same place. Is this pretty accurate?

We will meet with a radiologist this Friday.

We really liked both surgeons. Surgeon number one has done 3500 robotic operations. Surgeon number two gave us a crystal clear presentation of my husband's cancer and his options. He was intelectually impressive (or maybe just a better communicator), but has only done 1000 robotic prostatectomies. We dont know which one to pick if we go this route.

I am stressed out, can't sleep, can't eat. My husband seems to be racing towards surgery and I don't know if he is making life-altering decisions too quickly.

Thank you for reading this and for any thoughts you might have. Thanks to the wonderful people on this board we know a lot more about PC than we did two weeks ago.

 

Posted 8/22/2012 12:34 PM (GMT -5)
Relax - take a deep breath etc....

Odds are things will go real well and you'll deal with whatever you might to deal with.

He could probably wait a few years before doing anything and not have any issues with waiting.
Posted 8/22/2012 12:45 PM (GMT -5)
Hear all the options before deciding. "Racing" to surgery or radiation is not the thing to be doing. Take your time and fully understand the options and side effects. Be realistic on the side effects. The Johns Hopkins reports about ED and incontinance are higher than your doctors' estimates. Most docs are overly optimistic regarding the side effects. And regarding the risk of radiation induced cancer..it is extremely small...equal to the risk of not surviving surgery. It shouldn't be a consideration.

It sounds like you have visited two well experienced surgical specialists. Now do the same with radiology oncologists and learn about both permanent seed brachytherapy and High Dose Rate brachytherapy. Both have cure rates that are equal to surgery with less severe side effects.
Posted 8/22/2012 1:40 PM (GMT -5)
You might want to pick up that book by Walsh. I wish I had read it beforehand although I don't think it would have changed my decision. I'm also a "get it out" kind of guy.

My Uro almost promised some incontinence. He was right. He also asked how my erections were now (i.e. before surgery. I think that's important). He didn't make predictions on ED but I can't imagine him saying 90% chance of NO ED.

I want into surgery knowing these were both likely and probable outcomes, and that was indeed the case.

The one think my Uro did say which I found persuasive was here are all the bad side effects from surgery but here are all the options we have to deal with them.

I should also add regarding incontinence that I'm sitting here now, pad less and in boxer shorts, some four months after surgery, for the second day in a row. Biofeedback and kegels having been effective solutions.

As a PS... only on this list can I unembarressingly write all of this to a female reader! Hope it helps.
Posted 8/22/2012 1:53 PM (GMT -5)
Bluebird - let me qualify my post by saying I am NOT an expert at this PCa stuff, having just been diagnosed several weeks ago - but I'll provide my input for what it is worth. First and foremost as others will tell you - do not rush into anything! Being told you have "cancer" is scary as hell, but with prostate cancer you do have time to make what amounted to me to be the biggest decision in my life thus far.

My initial reaction was to "get it out of me" as well, but then fortunately I found the HW site and others, and did research to the point of "paralysis by analysis." That too is a phase that the two of you will probably go through as well, and that's o.k. because it's part of this journey we are forced into. You've done the right thing thus far by visiting with two very accomplished surgeons - now do the same with the radiology oncologists as JNF also suggested. Then take all of this back and sit down and go through it all.

With respect to side effects - you don't have to soley rely on published reports and statistics although they are important. More important to me was to ask each medical specialist I visited - what are YOUR statistics for SE's? They have them, so don't be shy - make it a requirement. If they are not willing to share their own stats I would be concerned.

At the end of it all, finish your research, make the "best" treatment choice for you - and don't second guess or look back. For me, I finally chose LDR Brachytherapy Monotherapy; I won't know how this turns out as my procedure is not scheduled for a few more weeks so time will tell. I would close by suggesting that whatever treatment choice you decide - go to the BEST practitioner - which is probably equally to if not more important than the treatment choice itself.

You'll be fine - PCa is treatable. Good luck and God Bless.
Posted 8/22/2012 2:21 PM (GMT -5)
Hi Bluebird, I will try to offer some semi-intelligent comments re your thread:

1.  Can you please add a signature with hubby's stats so we can try to give you our best thoughts based on his specific case?  Otherwise, the comments are likely to be more generic.  You should add things like his age, PSA (incl history), number of cancerous samples/number of total samples, % cancerous, etc.

2.  Two weeks post-diagnosis is way to soon to make a decision.  Take a breath and take a little more time to do your homework.  Read Walsh's book, Strum's book and the Scholz book, "Invasion of the Prostate Snatchers".

3.  Either of these surgeons seems to have the requisite experience necessary to do the job.

4.  I would be highly skeptical of anyone who promised a 90% chance of no ED.  It MAY turn out that way, and better docs tend to yield better stats, but 50% is more the norm.  Read thru the HW threads and see what our posters say about ED...in many cases it is not pretty.

5.  The comment about having radiation as a backup after surgery is generally true, but is only part of the story.  There are EQUALLY effective salvage treatments after failed radiation...they are just different.  Talk to an experiened RO about this to get the whole perspective.  And worries about distant cancers due to modern radiation should be considered just about as long as you consider dying on the table during surgery...neither should be high on your list of considerations.

6.  Statements that indicated ED generally ends up at the same place with surgery or - say - brachytherapy are not supported by the statistics.  Long term ED from surgery is about 50%; from brachytherapy about 35%.  And the radiatin patients tend to respond better to Viagra and Cialis.

7.  There are other sorty nasty surgical side effects that your surgeons should have discussed.  Things like shortening of the penis and ejaculating urine.  Make sure you know the whole story before deciding.

8.  One doctor said, "...my husband would still have a prostate and a new cancer could form there."  I suggest you make him back up that statement with some proven facts. 

You are right to be concerned about making potentially life altering decisions too quickly...you only get one shot at this.  In recent weeks we have an example of a poster (A Yooper) who did a GREAT job of considering and working through his options before making a decision.  May I suggest that you go back and read his threads to get an idea about how it should be done...IMHO.

Good luck and please keep us posted.

Jim

Posted 8/22/2012 2:34 PM (GMT -5)
Thanks for your replies. I updated my profile with a signature but I guess it takes time to post. My husband is 59 and had 7 out of 12 cores positive, G6, 5% to 70%. Two urologists said to act by 3 months, one said we have 2 to 6 months. I did get Walsh's book and it is great.

Yooper - I am analytical like you but my husband is action oriented. He just wants it out - but maybe he will change when we speak to radiologists. I wish you the best of luck in your treatment.

Thanks, Steve, Bill and JNF for your input. I will show all replies to my husband tonight.

If my husband does surgery,we are deciding between two great surgeons. Do you think that 1000 robotic prostatectomies is enough to become truly expert at it? We are torn between the surgeons.
Posted 8/22/2012 3:01 PM (GMT -5)
I certainly think 1,000 surgeries is enough experience to know how to do this well.  Only a very small percentage of all urologists have that much experience.  It really does make sense, though, to talk with a radiation oncologist before your husband commits to surgery.  He may well still decide to go with surgery, but it is important enough decision to justify some due diligence.  Best wishes, Medved
Posted 8/22/2012 9:33 PM (GMT -5)
Thank you Tudpock for answering my questions point by point and for your feedback medved. We saw another surgeon this evening who also feels that due to his volume of cancer my husband should be in treatment by 3 months time. The pressure to act is coming from the surgeons.

The advice on this board is so valuable. I appreciate it so much.

Post Edited (bluebird123) : 8/22/2012 9:04:16 PM (GMT-6)

Posted 8/22/2012 9:56 PM (GMT -5)

I just thought I would add my two cents.  I am four months after robotic P.  The surgery was easy but post op is very challenging.  I am just about continent but I am beginning to realize that the continence after surgery may not feel as normal as before.  Also, I have almost complete ED and hoping for improvment.  It is all physically and psychologically very challenging.   I am only 53 and I will be honest- I have wondered daily whether I made the right decision.  I did not really consider any other options.  HOWEVER, only surgery can really tell you whats going on in your prostate in terms of cancer, spread etc.  I had local disease without extension - this is the real advantage of surgery.  Other treatments just don't give that piece of mind.  Good luck with your choices - I think the best scenario is surgery and with luck to avoid ED.  In the end there is a gamble either way. But beware - prostatectomy is not gallbladder surgery - recovery is prolonged and unknown.  You can email me with questions.

Posted 8/22/2012 10:07 PM (GMT -5)
Its practically impossible for a patient to determine if any difference exists between two experienced surgeons. Volume isnt always a great indicator.
A book called "The Decision" written by a urologist that had a prostatectomy for pca is pretty good.
Posted 8/22/2012 10:31 PM (GMT -5)
Thanks starr15. I just bought it and had it delivered to my Kindle so I could read it right away.

This decision is really my husband's to make. I want him to do what he feels inside is right for him. But I am going with him to all of his appointments and trying to support him. And I can't help myself from researching PC to death and trying to learn all that I can.
Posted 8/22/2012 10:45 PM (GMT -5)
Take your time, do the research, get a third opinion if necessary. Research the side effects, from a male's perspective they can be horrible, incontinence and ED are very challenging. Make sure you have a list of questions for the doctors, because it is very easy to forget what to ask.

Good luck
Posted 8/22/2012 11:04 PM (GMT -5)
Welcome to HW.

I will just say this about surgery, which I had, and believe it was the best choice for me, considering my high Gleason score.

When we are in the heat of the moment, I'VE GOT CANCER, JUST GET IT OUT OF ME mode, it is easy to gloss over side effects. Since potty training at age 2, we have done our best to not pee our pants. After surgery, even if you are continent, the odds are your husband will have times when stress or certain activities will cause him to squirt enough urine to spot his pants. It is a tough thing to deal with both mentally and physically. I choose to wear a pad all the time just for insurance.

ED is another thing hard to understand when you can get erect when you want to, and ejculate semen. It will never be the same as it is now.

I just want your husband to really understand these points. Many men on here have said or thought If only I had known.

Good luck to both of you. Life doesn't end after treatment, but life is not the same either.
Posted 8/22/2012 11:43 PM (GMT -5)
The two surgeons have more than enough experience, no real difference there. My surgeon had only 350 robotics, and yet he was the best that I could find for followup care anywhere near where I lived, 4 years ago. Tupok is right, ED from surgery is more like 50/50, brachy 35%, no matter what those guys tell you. As one of the unlucky guys in the 50% who need to have a shot (trimix) for sex I'm not going to lie to you, I am disappointed with the outcome for me. I felt certain that with viagra I could be back to the way I was before. But I had BPH issues and I would do it the same way all over again. Radiation would have aggravated my urination issues. You want guarantees about something for which there is no guarantee. That's understandable, we all want to feel we made the right decision. No do overs for this decision. Sometimes you just have to take a big sigh, go with your gut feeling and take the big jump............
Posted 8/23/2012 12:52 AM (GMT -5)
  Hello Bluebird,   This is a big decision for the both of you, your husband is fortunate to have you by his side. There is a lot of information to absorb and we're glad to see that you already have Dr Walsh's book. Mine is full of yellow sticky notes with questions for the doctors.   Like your husband, I was a "just get it out" guy. One of the benefits of having surgery is getting the full post surgery pathology report. It put a stake in the qround and has saved us from worry and wondering about the extent of the cancer, whether it was confined to the capsule or had escaped. I believe that one of your potential surgeons said he would not take samples of any lymph nodes... pass him by. You want the lymph nodes sampled, even if it only for peace of mind.   Regarding the surgeon's predictions of side effects of continence and sexual function. Some guys are continent immediately, with others it takes a few months. It's an acceptable tradeoff for being cancer free. The ED may be the same... I have severe ED... pills haven't worked yet, but I have hope that at the two year mark, everything will synch up. In the mean time using tri-mix injections seems to work well, sometimes surprisingly well.   Please take your time in deciding, gather your information. Prepare your body by walking, kegels and if possible overall strength conditioning. The stronger you go in, the stronger you'll come out. Then allow time to heal - follow your physician's guidance.   I am partial to Dr Walsh's book, but I was also able to marry that information contained on the Johns Hopkins websites, beginning with The James Buchanan Brady Urological Institute - http://urology.jhu.edu/   BTW... I'm one of those guys that didn't like to take time off of work. Scheduled my surgery for Thursday afternoon and was released at noon on Friday. I did start back at work on Monday morning, finally going into the office on Thursday (wearing a leg bag) and to this day, no one knows that I had cancer. The catheter was in less than a week.   Best to you both,  
Posted 8/23/2012 4:48 AM (GMT -5)
Hi Bluebird,
I am just a wife, speaking from the heart, so apologies in advance if this offends anyone reading this.
“Surgeon number one ... he said that my husband had about a 90% chance of being cancer free, 90% no incontinence, and 90% no ED”
With respect, I would take those percentages with a very large pinch of salt and would suggest your husband does not base his final treatment decision influenced by those numbers.
Take your time; you don’t need to rush this. We can all remember too well how hard the time between diagnosis and treatment was so take some time to digest everything you learn.
Do look at Brachytherapy as an option too. You can see Jeff’s stats below. Did we make the right treatment choice?, time will tell. My initial reaction after diagnosis was “you have to have surgery” – Jeff was adamant that wasn’t going to be an option and so our education began.
What I can tell you 18 months post Brachy is that Jeff has zero incontinence nor ED and our lives continue exactly as they were before. Perhaps he will face ED in his future, perhaps he would have done anyway? But given the choice of ED today or possibly 2 years down the line ....
Sending you a hug.
Susan
x

Post Edited (overthepond) : 8/23/2012 7:21:52 AM (GMT-6)

Posted 8/23/2012 8:14 AM (GMT -5)
Be sure to check out ALL your options and get second and third opinions. There are no do-overs. It's a pain going to see doctors, but be sure to write down all your questions and be sure the doctors answer them. I had seeds and so far so good. Life is pretty much the same as it was before all this started.

You can read what I went through by clicking on the link in my signature.

Good luck you you and your husband.
Posted 8/23/2012 2:50 PM (GMT -5)

Hi again Bluebird.  I've been thinking about you guys and believe me - you are going down the same path that we all have.  I would simply stress again to slow down, meet with the Radiation Oncologists as you have with the surgeons, and be sure you have a list of questions written down - and then take copious notes!

There are tons of resources out on the Internet, so keep looking - and if you're lucky you too will develop a severe case of "paralysis by analysis" VIEW IMAGE but that too shall pass!

Here's a link to a segment on the Prostate Cancer Research Institute (PCRI) website that may be of help.  It may also help you to cruise around the rest of their website as well:

http://www.prostate-cancer.org/pcricms/node/127

 

I have committed to compiling a journal of my journey thus far to the rest of the guys and gals out here, and will hopefully get that done soon - with the hope that it may also provide some helpful information for you and others.

I'll close for now by repeating something I said in my first post to you - as you go down this path of information gathering in order to select the best treatment - INSIST on THEIR individual post treatment results - cancer free, ED, incontinence, and also make them DEFINE for instance what "continence" means - i.e. "only one Depends per day" or true continence.  They all keep these statistics, period - but of course if they say they don't then that would be a red flag of concern.

Hang in there - this beast is treatable - don't rush.  I, and many others will continue to provide our experience.

Posted 8/23/2012 9:06 PM (GMT -5)
Can I guess the names of the two docs? Dr. T and Dr. E?
Posted 8/23/2012 10:13 PM (GMT -5)
Doc 2 sounds more honest with the numbers.

We preach experience, but I believe that kicks in around 250-300, if the surgeon does them every week. That is a factor some miss. Regardless of how many he has done in the past, is it a regular progression (dailys, twice a week), or does he only do surgery every couple of weeks?

I won't say how many my surgeon had done, lest the whole board criticize me, but I will say the guy two days before and three days later dropped their caths without so much as using a pad. (I know them). I wasn't so fortunate.

By the way, when you ask about incontinence, insist that they respond in terms of "Leak free, Pad free". A big article from Cleveland Clinic a couple of years ago found that many uros considered one pad a day as to be continent. I don't. You shouldn't. Continent to me means you don't buy any more pads, and you give the leftovers to the local social services place. Yes, they take packs of stuff that can be used for folks who have medical needs but are just the same homeless.

Posted 8/24/2012 12:59 PM (GMT -5)
Bluebird,

You are correct.  In the end, it is your husband's decision to make.  My hubby, age 45 (at diagnosis) explored other possible treatments for his intermediate grade cancer.  We talked about it extensively, in the end he chose surgery, and I backed him 100%.  I know my husband (personality type), better than any book, or advice that we received from people, and knew he would have the most peace of mind going forward with surgery.  Once he reached his decision, he never looked back.  Realizing there were/are no guarantee's with any treatment, we were both fully aware of the SE's as they pertain to surgery, and were willing to accept them (tough pill to swallow).  We never saw the side effects as permanent, simply a temporary starting point that would ultimately get better with time (I guess that is where a little *faith* comes in). 

I am still in awe of this man.  He made a decision to *roll* with surgery, and hasn't looked back.  He is more than confident, and lives with no regrets.  Yes, we've dealt with ED, it was immediate even with medicine.  He never once allowed that to slow him down, nor get him down...not a complaint, nothing.  He is persistant.  We followed the protocol for sexual rehab and kept pushing forward, even when it was awkward.  He is now 6 months out, and completely dry (NO PADS), and Levitra is now 100% effective. 

I am more like you, analytical by nature, and he is more like your hubby, action orientated.  I feel his action orientated spirit  allowed him to make a decision fairly quickly yet confidently, and then move forward with no regrets.  I've seen him handle other major decision in his/our life this way, and I admire him for it.

Best of luck to you two!

Posted 8/24/2012 8:41 PM (GMT -5)
I would like to give a heartfelt thank you to all who are sharing their experiences and giving me advice. Every person has helped me so much.

Today my husband and I met with a radiation oncologist. He said that my husband would be a good candidate for radiation and recommended IMRT for 9 weeks. He said that my husband has cancer in too many cores for brachy. He does not do brachy if more than half of the biopsy cores have cancer in them. He said that surgery has more side effects than radiation does, and that 15% to 20% of surgical patients end up having to do radiation eventually, so he recommends doing radiation initially. Like all the other doctors, he said to do something soon.

My husband sent his slides to MSK for a second opinion and found out today that his Gleason status was slightly upgraded. His original pathology was 7 out of 12 cores G6; his new pathology is 6 cores G6 and 1 core G7 (3+4).

Although my husband flirted with the idea of radiation, by the end of the day he still was leaning towards surgery. He likes the fact that with surgery there is radiation as a backup. He says that he wants to be around to meet his future grandchildren. He is still finding it hard to make a final decision though because so much rests on his choice.

FrackMe, if you have any recommendations for NYC doctors or any experience with them you would be willing to share please email me.

Thank you again to everyone who shared their knowledge with me on this thread to help my husband and I on this very difficult journey.

Post Edited (bluebird123) : 8/27/2012 6:50:28 PM (GMT-6)

Posted 8/25/2012 2:18 AM (GMT -5)
Hello, Bluebird!  Good to see you have more information to work with.  If you have a bit of time, you might be interested in reading a thread called AUGUST SURGERIES.  There were about 7-8 of us talking about our journey with our husbands' PCa.  Many chose the DaVinci Robotic surgery method.  There were several gents posting there too.  It has lots of information you may find interesting.  (I don't know how to provide a direct link.  I just put the title in the Google search.)

Many of us wives have been down that road you are on now.  It is scary and overwhelming, but the support we received here helped so much.  Please feel free to ask any questions you may have.  Remember, you need to take care of yourself so you'll be there for your husband.  Prayers for you and your husband. Take care!

Peace,

Aimzee

Posted 8/25/2012 6:19 AM (GMT -5)
Dear Bluebird

I am very sorry you are here. But I am so impressed with the research you have done and the way you are approaching this. We were like rabbits caught in the headlights and we very quickly took the 'Get it out' approach. This was completely and utterly the wrong thing to do. We didn't shop around for surgeons. My husband was a Gleason 8 pre surgery (though this has since been downgraded to a 6 which is good) and we were so scared that he booked straight in for a prostatectomy.

Now you absolutely MUST continue to take your time and research. but don't research too deeply the later stages as there is simply too much ifnormation to try to take in and it all gets very scary. Take small steps and deal with each issue as it comes up. So now just focus on surgery vs radiation (photon or proton) vs brachytherapy. Speak to 2 specialists in each area.

Whatever option you go for, there will be unwanted side effects and these can all have implications for any other later treatments. For example, my husband's surgery went wrong when his catheter was removed (I believe) too early. This means that he is still incontinent and has ED. It also means that the radiation therapy he is now needing may cause even more issues for him in both departments.

If your husband is a high Gleason and there is a chance that it could have started to spread (as happened with my husband), then he will need radiation treatment anyway, so could he possibly avoid the surgery altogether?

However if he has radiation treatment and it fails, then surgery is extremely difficult afterwards because the tissue of the prostate becomes hard and scarred and very tricky to remove.

So there is no clear cut answer.

Did your husband's MRI scan show whether the cancer was detectable outside of the prostate? He could also try to get a C11 choline PET scan which might possibly show more clearly where the cancer is. Take your time and get all the info before you act.

Also I really would stress that you MUST look after yourself. It is so hard for us wives to handle all of this. You feel guilty because you have to be strong for your partner when you are crumbling inside. Please try to think positively and don't try to look too far ahead. I hope so much that you are fortunate and your husband is cured by whatever route you choose to go.

Good luck on your journey.
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