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Posted 11/3/2011 3:47 PM (GMT 0)
I am 41 years old and was diagnosed with Prostate Cancer.  2 of 12 biopsies.  One at 6% and the other at 60%.  Both with score of 7. 

All the advice points to surgery.  I am told surgery has a lower incidence of ED and incontenece than does radiation.

I am getting conflicting reports on whether the robotic surgery or standard surgery has lower incidence of ED and incontencne.  Please give me some feedback from those who have gone before me.

Posted 11/3/2011 4:31 PM (GMT 0)
Welcome to our fraternity and so sorry you are here. I really hate to see so many young guys like you being diagnosed with PC which really isn't an old man disease any more. You have found a great place to be to find answers and opinions to your many questions as we have many great guys here who all started out where you are now. We also have too many young guys like you too.

I am not a doctor or an expert but many studies have shown not a lot of difference in post surgery outcomes and side effects in robotic vs open RP surgery. IMO choosing a surgeon with a lot of experience whether robot or open is the key to having better outcomes.  Also at your age ED should be a concern and choosing a URO who also has ED specialist should be a consideration.  Check out your URO thoroughly and ask his peers about his reputation. In my case I asked my GP who he would use if he had PC and he told me my URO was one of the best in our area. He had over 700 Davinci surgeries and our hospital had the latest generation of Davinci robots.  In my area it was hard to find any experienced open PC surgeons so robotic was pretty much my only option.  I was fully continent 4 weeks after surgery and my ED is improving every day with the help of my URO.

Posted 11/3/2011 4:32 PM (GMT 0)
You are, indeed, a young man at age 41, but we have others on this forum your age who may soon share their experiences with you.

You've just been dealt a real blow by being given a cancer diagnosis.  Right now you need to calm yourself, read all you can about prostate cancer and its various treatment options, and educate yourself in every way you can before marching into the operating room.

For example, I would disagree with your statement about the side effects of surgery vs. radiation.

You twice mention incontinence and ED issues, so I assume those are heavy on your mind right now.  Those SE's can be unpredictable.  A lot depends on the skill of the surgeon (if you choose surgery), the location of the cancer, and whether or not the nerve bundles that control sexual function can be preserved.

I just wanted to post a reply, and fully expect that the more knowledgeable guys on the forum will be answering very soon.  I hope you find this forum as helpful and supportive as I have.  As you can see from my signature, I'm a generation older than you.

Posted 11/3/2011 4:33 PM (GMT 0)
Waallen
Welcome to the forum. You will get a lot of feedback here, probably too much. First of all do not rush into any kind of treatment. Secondly, if you have a wife or trusted friend, take them with you to your medical appointments. You need an extra pair of ears to hear what is being said.

You have already been given some questionable information. Radiation and seeds (brachytherapy) actually have better short term ED outcomes than surgery. Ask lots of questions and then act. Do searches and read as much as you can on this forum. You will get lots of conflicting advice, try to sort through it.
Posted 11/3/2011 4:50 PM (GMT 0)
With a wife and 4 young daughters my number one goal is giving myself the best chance of ridding myself of the cancer. Beyond that yes, ED and Incontincend is weighing very heavily on my mind. My goal via this forum is to along with my doctors determine the most effective form of treatment while at the same time limiting the negative side effects as much as possible. Guess that would be everyone's goal but hoping for the very best. I am a bit overwhelmed right now with all the differing opinions. One thing that is beginning to become very clear is that if I go the surgery route finiding the very best surgeon is critical.
Posted 11/3/2011 4:52 PM (GMT 0)
Hey lifeguyd,

Welcome to the forum; however, sorry you have to be here.  I'm sure you will get a lot of good advice.

You are obviously concerned about ED, so you may be interested in the following:

"Here's a link to an excellent video presentation whose viewing should be required of all new arrivals seeking options for PCa treatment. A video presentation titled "Sexual Problems in the Male Cancer Patient", concerning Erectile Dysfunction by Dr. John Mulhall of Memorial Sloan Kettering and author of the book "Saving Your Sex Life." Consisting of 4 parts, total time of about an hour and a half, it contains an address to a PCa Cancer Patient group and contains the most through and up to date information available. Well worth the time for anyone who is contemplating their method of treatment after a PCa diagnosis. "

www.mskcc.org/mskcc/html/94910.cfm

Posted 11/3/2011 5:06 PM (GMT 0)
It is pretty much agreed that the skill of the surgeon is a big factor but not the only factor. And from what I have read on this forum and other sources, there really is no clear answer as to which method of surgery will provide better results with any certainty. I had robotic surgery in January 2009 and now very rarely have even a very minor incontinence problem and ED is minor. I was 62 when I had the surgery so with your age, you are in a better spot for recovering. Perhaps the best advice is to seek surgeons who specialize in either robotic or open surgery and go with your feeling of in which surgeon you are most confident.
Posted 11/3/2011 5:07 PM (GMT 0)
Check to see if you have a local chapter of the UsToo organization.   If so, it could provide you with the opportunity to confer with others in your area who have gone before you.  You could learn about local doctors, their track record of success / failure, etc.

I was diagnosed not all that long ago and I spent a lot of time researching, talking, and researching some more.  My doctors told me that, typically, you have three times up at bat when it comes to combating PCa:

(1) Surgery

(2) Radiation
(3) Hormone Therapy

All three methods have their own inherit risks of side effects.  Also, it was recommended to me that based on my age (49), health, and other factors, that surgery was recommended as my best chance of attacking my disease.  Younger patients tend to have better outcomes and recover quicker.  Any side effects encountered, and you will have them, have a better chance of resolving themselves and in a shorter period of time as compared to older patients.  Surgery also gives you a much more definitive pathology and staging of your disease than a biopsy ever will.  In addition, if I was to have opted for radiation therapy that subsequently failed, the option of treatment via surgery would be limited at best due to the amount of scar tissue and damage that results from the radiation.

If there's one thing I learned, there is no standard black-and-white treatment procedure when it comes to PCa.  Every case is different with many factors that need to be considered before, during, and after treatment.

Posted 11/3/2011 5:15 PM (GMT 0)
Not a doctor or an expert by any means, I am closely in your boat, I'm 49, and my stats are close. I went to see both surgeons and radiologists before making my decision, and came to the conclusion that at my age (and in my specific case) radiation is not an option, (Even the Radiologist told me that).
Much more likelyhood that the cancer can come back, or that the radiation itself, no matter how precise, can cause other cancers. While these may not show up for 15 or more years, in my case, I will suffer with the side effects, IF it comes to that, rather than live with the fear.

Rich
(Robotic Surgery scheduled for 11/10/11)
Posted 11/3/2011 5:41 PM (GMT 0)
Hi Waallen - While I'm not in my forties, I'm on the younger end as well (51) and was just diagnosed just over two months ago. You have found a great place here and I'm sure you will be as impressed by the amazingly high level of knowledge and experience of the moderators and vets here as I have.

As others have already suggested, take a breath and take some time to understand your options. Your cancer and situation is yours, and only you and your wife are in the best position to make the right decision for you.

You might find a couple of sites as helpful as I did. pcf.org is the Prostate Cancer Foundation site, and ustoo.org is the International Prostate Cancer Education and Support Network. Both have lots of good info on many fronts.

To give you hope, after an 8/22/11 diagnosis and 9/27/11 Robotic surgery, I was 95% continent during the day within a day after my cath came out (100% now) and much better at night. I'm also having good results with Viagra. My wife and I are off to South Africa on 12/8. Again, my experience is only mine, but many of us are lucky and this can and does go well for many.

Please keep us posted. Glad you're here.

Steve
Posted 11/3/2011 5:52 PM (GMT 0)
It means a lot to know there are people who care. I appreciate the comments as I find all beneficial.
Posted 11/3/2011 6:08 PM (GMT 0)
sucks to get it, sucks more to get it so young. I got mine at 40 last year.

I had surgery.

I have no ED or incontinence but many do. That is the reality.

I think what matters is that regardless of choice of treatment you get someone who is really really good. Their skill will determine your issues with ED and incontinence to a great degree.

Assuming you do go with surgery, you can at least know that the younger you are, the better chance of minimizing or avoiding side effects. that's assuming you are sexually healthy now and go with a good surgeon.

do you have kids?

This will change you forever, but in all honestly it isn't as huge a deal as I thought the first 2-3 months after being told. That initial shock/trauma turns to understanding, fighting and in all honestly mild depression. A little anger too.

Do you have people to talk to about all this?
Posted 11/3/2011 6:27 PM (GMT 0)
davidg,

I have 4 amazing daughters between the ages of 5 and 13. My wife has been good to talk to and understanding. It is hard to share my fears with her as I know she is fearful of not only the cancer but the side effects as well.

How did you go about finding the very best surgeon available?
Posted 11/3/2011 6:41 PM (GMT 0)
Waallen,

I'm really sorry to hear about your diagnosis, but welcome to the club.

I'll throw in with the guys who are telling you to take your time and get more information. You need to deal with this, but not right this minute. I suggest you take a month or two to sort through the facts first; you have time for that.

There's a wealth of information here, so read through the threads. Also, read Dr. Patrick Walsh's book: Guide to Surviving Prostate Cancer. It's written by a surgeon with a surgeon's bias, but it's the Bible. There are other good books out there, and I'm sure you'll hear about them here.

Good luck with whatever you decide. A lot of young guys do better than us old crocs with incontinence and especially ED, so don't give up hope on that. If you decide on surgery, the key is getting an outstanding surgeon with a lot of experience. Do everything you can to get to an excellent doc at a center of excellence, and don't be bashful about asking how many prostatectomies he's done.

Also, please keep in touch with us and let us know how you're doing. There are a lot of very knowledgeable and caring people here who can really help. Hang in there.

Jonathan
Posted 11/3/2011 6:42 PM (GMT 0)
It depends on the area where you live. I spoke to oncologists, urologists and people who had had PCa in my area. Most recommended the guy I ended up going with and even my urologist who wanted to operate on me admitted that the guy I ended up going with would do a great job. He told me he would do just as good a job but with 2500 fewer surgeries to his name I couldn't believe him.

Most, not all, will agree that a guy who has done a lot, and by a lot I mean thousands, will probably be very good as long as he does them all himself and has a great team surrounding him. I don't know where you live, but I would say you want to look for someone who has a reputation and who has done volume. You don't want some guy who is basically still in training.

My guy told me I would not have ED given my age and sexual history and that i would be able to control incontinence within a few months and he showed me on a detailed diagram how he operates and what he does to try and ensure this. I was able to control urination from hour 1 fully and don't have ED although I did start out using Cialis after 4 weeks and have decreased using it big time. The only real difference sexually is the dry orgasms which aren't as bad as some claim, but in all honesty I do sometimes miss the old version. But it's all a price worth paying anyway as long as the cance is gone.

If I were you I would consult the best surgeons in your area and the best there is for radiation. Ask them all tough questions. At your age I personally wouldn't consider AS. We're too young for that. But that too is probably something you should at least look into. Everyone advised me against it because of my age (40)

Have you told your daughters yet? That was one of the hardest things for me. Horrible thing to do without breaking down. I just assured them everything would be okay. And you are going to need your wife like never before. A loving and understanding spouse is critical in my opinion. Not just emotionally, but also to help pick up the pieces physically after the operation.

I think you can email me from this site if you need to ask any more questions. You'll be fine, you really will.
Posted 11/3/2011 6:46 PM (GMT 0)
One way to find a good surgeon is to lets us know where you live and maybe we can make some recommendations. Check for a local PC support group like USTOO and ask for advice. Ask your primary doctor and if you have a good hospital ask them. Do you have any world class cancer centers near you like MD Anderson & Sloan Kettering ETC.

I can honestly say 5 months after surgery I feel better overall than I have for years. I can now pee like I did when I was 18 and put out fires with my stream. The ED is not good but it was a problem before surgery as I took Viagra for the last 3 years. The best part is knowing from my post pathology that  I most likely got all the cancer before it escaped the organ and have  great odds that I am cancer free, something only time will tell.

Terry

Posted 11/3/2011 6:49 PM (GMT 0)
I was going through process when I was 36, was diagnosed a week after my 37 birthday... I know mentally it is tough.  Hindsight for me after biopsy, surgery was much easier....Biopsy recovery for me was a nightmare.... 

I am not a doctor but agree with the posts...

A lot depends on the skill of the surgeon (if you choose surgery), the location of the cancer, and whether or not the nerve bundles that control sexual function can be preserved.

Key is to pick an experienced surgeon open or robotic...

Good Luck!!!

Posted 11/3/2011 7:09 PM (GMT 0)
davidg your email is not listed under your profile. I am not sure how to get it without disclsoing on this site

mine is (removed by moderator after comment from poster - 142) If you could email me privately I would then have your address

Post Edited By Moderator (142) : 11/3/2011 2:51:43 PM (GMT-6)

Posted 11/3/2011 7:29 PM (GMT 0)
sent
Posted 11/3/2011 7:29 PM (GMT 0)
Do not post your email address, spammers, and other unsavories also watch this. The moderator will remove it soon anyway.  We may have moles herein, too.

Post Edited (zufus) : 11/3/2011 1:33:11 PM (GMT-6)

Posted 11/3/2011 7:49 PM (GMT 0)
How do I remove email address?
Posted 11/3/2011 7:59 PM (GMT 0)
You can go back to your post and edit the email address out. The edit button is to the left of the X symbol at the top of the post looks like a pencil.  You can also go into your profile and allow the email to show there only to HW members. The email then can be viewed by hitting the email button bellow your screen name on all posts.
Posted 11/3/2011 8:12 PM (GMT 0)
Hello Waallen
Consider Brachy therapy, there is a new small seed technique available now and they say very good outcomes in regard to SE's. I have got two mates who went down Brachy road recently and both have PSA's downtrending and no SE as yet 1 @ 6 months 1 @11 Mths. So if your stats suit check it out. I was advised against it as to much involvement of tumour.
Goodluck
Posted 11/3/2011 8:14 PM (GMT 0)
Welcome Waallen, and sorry you’re here. I mostly lurk these days, but felt compelled to join in the fray.

To give you an entirely different outcome than golfnooch, read on.

I was 49 when I had open RP surgery (I’m 50 now).

I was discharged from the hospital within 48 hours, and would have been sooner if not for bladder spasms.

I’ve had little to no ED issues. I had quality wood with the catheter in, the week after surgery. I do use Viagra as needed, but usually only for sexual activity multiple days in a row (yes, I know how lucky I am).

I’ve had ZERO incontinence issues. Wore a pad after the catheter removal for a few days and nights just to be sure, but never really needed them.

Good luck.
Posted 11/3/2011 8:54 PM (GMT 0)
Waallen,

E-mail removed for you -

As everyone has offered welcomes and good advice, I'll just say I was most likely to have posted along the same lines as golf -

I am in that late 50's group that is pretty well represented here.

Yet another "Welcome"

 

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