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Posted 12/19/2008 7:21 PM (GMT 0)
Hi everyone,

    My husband was diagnosed with Prostate Cancer this last Tuesday.  Yes, Merry Christmas to us cry

He also has MS so double trouble.  His Gleason score is 3+3=6. they're not recommending a bone scan and he hasn't had the CT scan yet.  Don't know the stage but the VA Urologist felt that it was confined and early stage.

    He's leaning to having the DaVinci Surgery done because of the fatigue radiation would cause.  With MS he already has bladder problems and fatigue. 

    Any advice you guys could come up with would be huge. 

Posted 12/19/2008 7:34 PM (GMT 0)
Duckfan,
So sorry you have to join the club and at Christmas no less. However, the Christmas present is that a gleason 6 is not that bad and it does sound like you have it early. As one who has had DiVinci, I can tell you my surgery was easy (very little pain), and had a relatively short recovery time. Keep your chin up it will be OK.

I am sorry but I am not familiar with the extent of "radiation fatigue." I would assume it would be less with seeds (brachytheraphy) than with external beam. It might be worth your time investigating. Regardless, many of us made our decision to go with DiVinci anyway - as our best option of choice. Please do a lot of reading on this site - you will find it helpful, and there are many good links from this site. Merry Christmas.
Posted 12/19/2008 7:37 PM (GMT 0)
Hi duckfan...sorry that you had to join our club, but you will find it quite helpful as you undertake your journey. I don't know what the complications of MS would have on PCa treatment, but I will say this, it sounds like the cancer is confined to the prostate at this point. This is very good news as it will allow you a wide choice of treatment plans to choose from. I had the DaVinci surgery, and from my perspective it was very easy on the recovery stand point. While I still am healing from the incontinence and the ED part, I am more than willing to work on those things knowing that my cancer is gone...or at least the PSA is undetectable for now.

Good luck...keep reading and hope you keep us informed on what you do...
Posted 12/19/2008 8:20 PM (GMT 0)

Hello Duckfan:

So sorry that you and your husband have to join us here, but if the cancer is early stage you should be hopeful and optimistic.  Chances are very high that your hubby will be cured and you have multiple options to accomplish that.

One of our forum members posted this link within the past couple of days.  I think this is excellent and gives you some perspective about treatment options.  I also highly recommend Dr. Patrick Walsh's book "Guide to Surviving Prostate Cancer".  This is an excellent primer on the subject.

http://content.nejm.org/cgi/content/full/359/24/2605?query=TOC

I would also strongly recommend that you consult with an experienced (300+ procedures) robotic surgeon as well as an experienced radiation oncologist.  Your urologist should be able to recommend both.  That way you will get multiple opinions and be able to intelligently review your options.

There are many men (and wives) on this site who can give you perspective about both open and robotic surgery and I encourage you to seek their advice which they gladly give.  There are also a few of us who have chosen other treatments (mine was seeds).  We will also be glad to help in any way we can.  For me, the seeds were a good choice and, as you can see from my signature, the early problems are really non-existent.  However, with the bladder problems that your husband has, this may not be a good option.  Again, a good radiation oncologist should be able to help.

Good luck and let us know how you proceed.

Tudpock

Posted 12/19/2008 9:06 PM (GMT 0)
"Watchful waiting" may well be an option in your hubby's case too. If the PSA is also low (Gleason 6 is low), the cancer may be slow growing. There have been discussions about over-treatment of lower grade PCas -- something you want to avoid in your case.

If MS or other health conditions are going to shorten your hubby's life-span -- and depending on his age -- there is a case for doing nothing.

Any treatment will impact on his quality-of-life. Surgery often causes incontinence and ED (erection problems), at least in the short term. So if hubby is tending in that direction already, surgery will make it worse.

Ultimately, it has to be your decision, as there are a whole host of factors to be considered that we don't know about. Good luck with whatever you decide.
Posted 12/20/2008 12:40 AM (GMT 0)

Dear duckfan,

Radiation fatigue is real, but it is short term and minor.  Not really an issue.

Regards,

Bill

Posted 12/20/2008 1:15 AM (GMT 0)

Sorry to welcome you to the club.  Please take time to research your options then make the decision that is right for you.

Good Luck,

KW

Posted 12/20/2008 5:06 AM (GMT 0)
A little more information. My husband is 62 and in general good health other than the MS. This site is great. I remember when he was first dx'd with MS. we entered the message board world and I can't tell you how much it helped. You have no idea. His Neuro. wasn't too happy with us having so much "information" but it sure helped us make so good decisions that ultimately stopped the progression of his MS.

Now on to the next fight. Thanks again so much.
Posted 12/20/2008 2:13 PM (GMT 0)

..Hi duckfan and welcome to the site. I noticed you said VA urologist. I don't know if you're aware of the fact if your husband is a "boots on the ground" Nam' vet his PCa Dx is a automatic service connection disability claim. If you're already going to the VA you both know what that means, so if that's the case check with the Veteran's Benefits Officer.  As of right now the VA does not do the Robotic surgery.

  Again welcome to the site, you'll find many good people here ready and willing to help however they can.

Posted 12/20/2008 5:47 PM (GMT 0)
Thanks Bluenose. Yes my husband is a Vietnam Vet, 101st Airborne Ranger. Anyway, he has already submitted the claim for Prostate Cancer presumptive to Agent Orange.
Posted 12/21/2008 12:21 AM (GMT 0)
Duckfan, Sorry you both have a new problem to face. Please accept my thanks for the service your husband rendered to our country. And if you were married at the time, you too! -- as a Navy man, I know how much the spouses have to contribute. As for the PCa, a Gleason of 6 is on the better side and is more likely to be contained at this point. I also recommend as others have to see both a DaVinci surgeon and a radiation Oncologist to get both sides of the picture. Be sure to ask each of them about active surveillance as Piano suggested as well. Each of these may be a viable path. Best wishes, thoughts and prayers.
Posted 12/25/2008 10:18 PM (GMT 0)
Update-

    My husband saw a Urologist/Surgeon yesterday morning.  He looked over my husband's report and did another exam.  He said my husband's prostate was not enlarged but very irregular.  He probed the thickened side and said the other side also had some thickening.  He was a little disappointed that the VA only did 6 samples but didn't suggest another biopsy.

    He suggested that my husband would do well with surgery but didn't suggest that radation would be another option.  My husband doesn't have problems with erection and the Dr. was encouraged by that.

    My husband has an appointment on Jan 21st with a Urology Surgeon that specializes in the DaVinci techinique.  We will keep that appt. and see what that Dr. has to say. 

    All in all, confusing but somewhat hopeful.  The Urologist said that he was over 75% sure that the cancer was confined and I think he labeled it T-2, I think.  So much information to process.

    Here is the VA's report.

      6 samples taken.  3 report Prostatic Adenocarcinoma with a Gleason score of 3+3=6

                                 3 report Negative for Malignancy

Posted 1/23/2009 3:47 AM (GMT 0)
Well, we had the appointment with the Urology Surgeon. We were very impressed with his knowledge and he answered lots of our questions.

He feels that with my husband's MS that radiation is the best course for him. We would have to drive 3 hours away and stay for 8 weeks for the standard radiation treatments. This isn't a good option for my husband because of his MS treatments and his general feeling of well being. He doesn't do well away from home. He also talked about brachytherapy but we weren't able to see a specialist. The clinic is setting up the appointment.

We left feeling like the brachytherapy is the best for my husband right now but after reading some scary posts, well you know how confusing this is.

I guess we'll wait until we talk to the oncoligist that specializes in brachytherapy before the decision is made. My husband has also said maybe he should just take his chances with the surgery.
Posted 1/23/2009 4:17 AM (GMT 0)
Duckfan,

Sorry to have missed your earlier posts. I guess they got lost among the holidays. Radiation might indeed be best, but I'm wondering why it's better than surgery for you. I guess I don't know enough about MS. At any rate, you can't go wrong with getting more information. Each of the experts will have his/her own strengths, weaknesses, and biases. Beware of anyone who is overly pushy and sure of themselves.

Good luck,

DJ
Posted 1/23/2009 4:27 PM (GMT 0)
Dear Duckfan, It is always interesting to me that almost 100% of the time, radiation oncologists say radiation is the best, and urology surgeons say surgery is best. A lot has to do with the personality of the doctor....(who you feel instinctlvely is better)...but that can also be a detriment to your decision making.
I remember being exactly where you are. After leaving each doctor we had different ideas....One day one thing, the next day something else. With the gleason of 6, you are pretty sure to have it confined. I dont know how MS would differ things...That is surely something you should know...Also know that radiation and brachy can have side effects for up to five or six years; there are usually no side effects while you are having it...It creeps up on you... With MS that might be something to consider....Also, if the PSA does begin to rise again, your options are limited. Take your time...your first shot is the most important... Di
Posted 1/23/2009 4:39 PM (GMT 0)
Duckfan:

Your first post really struck a chord with me-I had a similar Christmas gift in 2007.
After a lot of research and several interviews, my wife and I picked DaVinci at the hand of a surgeon who does nearly 300 cases per year; we have not for one moment regretted that decision. Having just gotten my third post-op "0" PSA test, I can assure you that there is no better feeling than the knowledge that the problem is gone, over with, and very unlikely to come again. I know everyone is different, but for me the inconvenience of the "complications" (ED and incontinence) pale by comparison to that knowledge.
Caveat: I know nothing (relatively) about MS and how it is affected by the surgery, but it does cross my mind that a volume surgeon might be more reluctant to take on a patient with unpredictable complications for fear of the case impacting success rates. In any case, like one of the earlier posts, I would wonder why he discourage the surgical alternative, Most of the really good, high volume docs are pretty sensitive about their success rate numbers.
Hang in there-your husband is blessed with the most important thing he needs through all this: a loving and completely supporting wife.
Posted 1/23/2009 6:18 PM (GMT 0)
Thanks for the good posts. It is so confusing. We left Eugene with the idea that brachytherapy would be the best but after reading everyone's posts now I'm not so sure. My husband also said maybe he should just take his chances with the surgery. It seemed like the brachytherapy was the one with the least amount of side effects.

He's waiting for a phone call from the oncologist and maybe we'll know more. The surgeon didn't say he wouldn't do the surgery but with my husbands already MS caused bladder problems he felt that the surgery would be hard on him.

My husband is pretty down right now and totally out of patience. He's always lacked that:)
Posted 1/23/2009 7:20 PM (GMT 0)

Hello Duckfan:

I'm pasting in a copy of a post I sent to another forum member who was considering brachytherapy.  For me, so far (6 weeks post procedure with zero side effects), that choice has been a great one.  However, it may or may not be for your husband.  Anyway, here are some thoughts:

 

Hi and welcome.  I have observed that most of the guys on this site have elected surgery and you will get plenty of advice from them.  My stats were not far from yours and I looked at all options, narrowed them down to da vinci and brachy, and ultimately chose brachytherapy.  My procedure was recent (3 weeks ago) and, if you are interested, you can check my thread "Tudpock's Brachytherapy Journey" on this site to see my thought process re my choice -- plus you'll see my post-op situation which is remarkably good, i.e. my life is normal and all equipment is functioning great.

 

Having said that, I wouldn't necessarily recommend seeds for you, I just know it was right for me.  I'm sure you have examined both options carefully and know the stats and SE's backward and forwards so I won't go into those except to say that, with your cancer stats as I read them, the cure rate for both options is basically the same.  There are a few other things to consider, however, that may not necessarily be in all of the books, so I'll throw them in for whatever help they can be:

 

1.  There is a personal psychological issue that only you can answer.  That is, how important is "getting it out" to you?  You'll read a lot of posts on this site from men for whom that was a really big deal.  They wanted the cancer out of their bodies, wanted to see an immediate pathology report and that was that.  For me, that wasn't a big deal at all...the important thing was to do lots of research and make an informed decision as to the right cure and the quality of life issues, then move on.  There are no sure things with either choice...

 

2.  The other issue many men bring up is that "surgery after radiation" is not really a good option but that "radiation after surgery" is possible. That is true (though some docs do surgery after radiation but it is a very difficult procedure).  There are other options after seeds that are available but you should probably assume that surgery is not among them.  If this issue is important to you, then brachy may not be your best choice.

 

3.  The immediate side effects from surgery are well known...and you can read them in spades on this site.  Re brachy, the immediate urinary side effects are generally frequency and urgency and may last a couple of months.  However, IF you don't have much of an issue with this pre-procedure, you probably won't post-procedure.  My urologist gave me a test (can't remember what it is called) that scored me on such things as number of times I had to go urgently now, number of times I get up in the night, weak stream, etc.  My score was low (that's good), meaning that I did not have issues on those functions pre-procedure.  My radiation oncologist and my urologist both predicted that my post-procedure issues would be minor or non-existant with Flomax treatment and, so far, they have been correct.  Now, remember I'm only 3 weeks out, so I may yet have some of these issues but, so far - so good.

 

4.  ED issues occur in brachy patients at a slightly lower rate than in surgery patients -- but there are varying reports on this.  However, the ED with surgery occurs immediately after the surgery and generally gets better (with pills) over time.  The ED with brachy occurs later, i.e. 2 years++.  And, as in the case of urinary effects, if your equipment is working well before the procedure, the chances are better that it will work after the procedure.  Also, if ED does occur, the same little pills that surgery patients take work with brachy patients.  For me, sex started 2 weeks after the seeding, and junior responded well with no pill assistance needed.  I'm looking forward to 2 good years and then, if we need a little help, I'll pop the pills at that time.

 

5.  There are a small % of brachy patients who have bowel issues...but it's a larger % than surgery patients.  Experience of your radiation oncologist is key here as the issues seem to vary with seed placement and dosage.

 

I hope this helps a bit.  It's a BIG decision and I wish you the best.  Please come back and let us know what you decide.

 

Tudpock

 

 

Posted 1/23/2009 8:10 PM (GMT 0)
Hello duckfan, nice to hear from you again. this whole pc thing is tough on the nerves, both for the men and their spouses. you feel like you are between a rock and a hard place all the time, or you are having choose between getting stabbed or getting shot. You are doing the right things in your research of available options. I agree with the others, the MS factor is a big unknown to me and I am sure most here. I won't pretend to know what to do, but we are here for you and your husband, and keep boucning back what you learn on your path. david
Posted 1/23/2009 8:54 PM (GMT 0)

Duckfan,

Sorry to hear of the bad news. We all know what that feels like.  I opted for the DaVinci method.  I know about 10 people personally that have had PC.  half went with the surgery and half went with the other methods (radiation etc).  We are all doing ok.   I went with the surgery so I wouldn't have to worry about it.

take care

Posted 1/29/2009 1:25 AM (GMT 0)
Well, we just got back from two Doctor appointments in Eugene, OR at the Urology Clinic. I must say that the Dr's were extremely professional and helpful. We live in such a small area and the Doctors down here are pretty good but always seemed rushed.

This is what we found out. Multiple Sclerosis does put a big wrinkle in the choices. We saw a Surgeon, Oncologist and Radiation Oncologist and all three did not recommend surgery. They were afraid that my husband, because of his MS would not regain continence. We appreciated their candor.

All three recommended the External Beam Radiation and we gave it good consideration. Problem is, the closest center is in Eugene which is three hours away from here. We have the funds to be able to live in Eugene for 8 weeks, we're retired but my husband thought about his "quality of life" stuck in a motel, etc in Eugene. If he didn't have MS we could go out to dinner, go to Duck Basketball games, go to the mall, go to movies to entertain ourselves. He can't do any of these things anymore. By the afternoon he's to fatigued to do anything except on rare days. He's decided to not do the External Beam.

On to Brachytherapy. We have to go to Portland, Or which is a 5 hour drive. Our kids live there so it's really no problem. We will have access to Oregon Health Sciences which is one of the best around so we feel pretty comfortable with the procedure being done there. Yes, there are side effects but the Dr's felt that my husband, given his current state urology health would do well with managing them.

We're comfortable with this decision. My fear is the what if's but my husband and I are both Christians and the Bible says that God has not given us the spirit of fear so we're not going there.

That's our story. Say a prayer for us will you?
Posted 1/29/2009 2:11 AM (GMT 0)
duckfan,
thanks for the update. sounds like you are getting some good advice, and already into the process of elimination for treatment. there is someone here that just went through brach "seeding", I believe just in December, perhaps he can give you some advice on that. I was afraid your husband's MS would complicate what is already a complicated process of choice. It was interesting that all 3 experts ruled out surgery ,that is pretty convincing on that point. With your husband's MS, the 8 weeks of radiation might have been taxing for him to endure. Like all of us here, at some point, when you make your final choice and arrangements, you just have to trust and live with it, and pray you made the right choice. My best to the two of you. Please keep us posted here.

David in SC
Posted 1/29/2009 2:12 AM (GMT 0)
p.s. for curiosity sake, did any of the three experts suggest "watchful waiting" as a viable option for your husband?
Posted 1/29/2009 3:11 AM (GMT 0)
Yes, the surgeon, felt that with my husband's low Gleason and PSA that he could wait a year to decide.  My husband just wants to get this over with, take care of the cancer and try and enjoy his life as much as he can.  MS limits him so much that his enjoyment level consists of small things that most of us would take for granted.  Going for a short walk with his cat, Portland Trailblazer games, a good movie, seeing his granddaughters.

He even thought that maybe he should just do nothing and take his chances.  I ruled that out quickly.  I've lived with this man happily for 37 years and I'm not ready to lose him yet.  His cancer is slow growing apparently so that may not happen but I can't let him take that chance. 

Posted 1/29/2009 3:19 AM (GMT 0)
Interesting, sounds like the surgeon might also think your husbands cancer is slow enough, and low enough to wait even another year to decide, not the usual thought for most surgeons, my own included. I've been married for almost 35 years, so I understand your feelings on that part, with side affects expected after my surgery in November, my wife was much more interested in me being around with her a good bit longer.

The only thing I am thinking, about the watchful waiting theory, is that with his biopsy, 3 out of 6 samples hit cancer. Is that all, or is that all they found on that pass? Always a question to be concerned about. His initial gleason is a 6, which is much prefered, but sometimes, after surgery, it gets upgraded, in this case, if it were a gleason 7 in reality, most experts wouldn't reccomend waiting around to see what it can do.

I hope the two of you gets some peace of mind on the subject, so he can continue to enjoy the things he likes to do and is able to do, and the two of you can continue to be happy.

David in SC
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