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Posted 10/2/2012 12:13 PM (GMT 0)
I'm with Over, also. Show him the posts, opinions and suggestions. There is a lot of valuable experience here. Good luck to you and your husband whatever he decides to do. I wish you bot the best. He's a lucky guy to have you by his side.
Posted 10/2/2012 12:13 PM (GMT 0)
Worried, I read your post and feel your pain and frustration. When my husband was diagnosed, he too didn't want to explore other treatment options nor was he interested in speaking with other surgeons...for my husband, surgery was his treatment of choice and there was little I could say or do that could sway him.

Is there a possibility you could meet with the uro without your husband and lay out your concerns and questions? After my husband's surgery, we received a copy of the surgical path report. My husband wasn't too interested in what it had to say but I was dissecting every word and freaking out over what I thought it was telling me. I decided to call the surgeon and see if he would speak with me to explain every detail of the report. The doctor called me back within a couple of hours and sat on the phone with me for about 40 minutes going over the report and answering my questions. I can tell you that I felt a tremendous amount of relief after speaking with him, and was able to "spoon feed" my husband bits of information to help him understand the final diagnosis. Four and a half years later, he's doing just fine but the first 18 or 19 months after surgery were a challenge for us.

As far as anyone telling you what you should be doing: there are always arm-chair quarterbacks. One of the hardest things I had to deal when my husband was first diagnosed was the bits and pieces of information I received that led me to more questions and more bits and pieces...it became a vicious cycle of never-ending information overload.

The only piece of advice I can give you is to breath...your head is filled with lots of stuff right now and I imagine that all kinds of scenarios are rattling around. One step at a time...it's all any of us can do.
Posted 10/2/2012 12:52 PM (GMT 0)
Worried - I feel for what you must be going through, and I say your hubby is blessed to have someone that is so informed and involved. I always read out here how many wives are so involved in this journey, me, I don't have that but that's another story and doesn't matter here. My point is you are involved and should stay involved. Yes, it is his body, but the two of you have to live with this beast and whatever treatment is chosen.

Lots of great input on this thread - and based on that I whole-heartedly agree with Susan's suggestion, print this thread out, and include your initial post/frustration, and leave it out for hubby to read. I would also put out any literature you can with respect to the results of your research - hell, wallpaper the kitchen table with it all and based on the timing here, do it now! I would also suggest to include a completed nomogram on your hubby stat's and put that out there front and center!

I took the liberty of doing a nonogram based on some assumptions for your hubby's stats because I don't know all of them - I used the following:

PSA: 5 ng/ml Age: 60 yrs Clinical Stage T3a Gleason 5+4, 8 of 8 positive Results:

Extent of Disease Probability

Indolent Cancer N/A

Organ Confined Disease 18%

Extracapsular Extension 76%

Seminal Vesicle Invasion 56%

Lymph Node Involvement 30.0%

Worried, this was just based on my guesses of his stats, you could run it based on his exact stats and here's the link to the Memorial Sloan-Kettering Cancer Center nomogram tab:

http://nomograms.mskcc.org/Prostate/PreTreatment.aspx


I really, really feel for you both and at the end of the day wish you the best in this all. My thoughts and prayers are with you guys.
Posted 10/2/2012 1:12 PM (GMT 0)
Worried

I have nothing to add - others than gentle hugs.

Bud

We will beat this crap!
Posted 10/2/2012 3:50 PM (GMT 0)
I thought my signature with hubby's stats would show, but it doesn't always.  Here's his stats so far

First ever PSA due to life insurance 'physical'- Aug. 10

  PSA 73.76

PCP repeated PSA and did DRE on Aug. 20- PSA 81, DRE- 'firm'

Uro- did DRE (firm) Aug. 28- scheduled biopsy

Biopsy- Aug. 30  8 out of 8 cores positive Gleason 5+4=9  cores range from 50% to 90% involved (lowest gleason core was 4+3=7)

CT and bone scan on Sept. 5- no sign of spread

  Hubby truly believes scans are 'right'- I tried to explain that they won't 'show' any spread until it's significant- esp. the CT. 

My biggest concers are the very fast rising PSA (doubling rate about 8 weeks), high gleason (which I expect surgery will show is really a 10), 90% involvement in some cores which to me indicates very high possiblity of extracapular involvment, and sympotms hubby has show over the past year (which he is in denial about)- more frequent urination,fatigue, back, neck, jaw and foot pain. 

There will be no more tests prior to surgery and no second opinion at this time- I've accepted that.  Putting things out for him to read would only anger him.  NOT going to do that.

 

My questions now are-

Can they do Free vs attached PSA, PAP, PCA3 tests sometime post surgery?  I know they will do a  regular PSA about 3 months after surgery. 

Would an MRI be more likely to show mets than a CT and/or Bone scan?  Why / how? 

What pain (and other symptoms) should I watch for - especially for bone and other  mets?  He doesn't handle pain well in the first place.  What I've read so far indicates bone mets are extrememly painful. 

 I know a good bit of anatomy - even have a very basic medical understanding, and have taken some biology and pre-EMT/first responder  classes in the past- so know advanced first aid and can 'speak' /understand 'doctor' rather well.  I know where his lymph glands are - they do swell regularly.  I recognize nerve bundles when I massage his feet/legs/back/neck, etc.  and can 'follow' his pain.  It may osund weird- but I am somthing of an empath. 

I just want to be ready and able to help him.  Knowledge is power to me.  another 'weird' thing about me (at least in my family)- I'd rather prepare for and expect the worst- then if things turn out better I'm ok.  I HATE to be 'blindsided' by 'worse' news. 

THANKS SO MUCH FOR LISTENING.......... shocked

Posted 10/2/2012 3:51 PM (GMT 0)
Aso forgot- he is 57 years old. 
Posted 10/2/2012 6:04 PM (GMT 0)
Worried,

It sounds like your husband is still in the denial stage and needs to face reality. I am not a medical professional or an expert but with the numbers your husband has, it is likely that his PC has already spread outside of his prostate. I have heard stories of men with similar numbers insisting on surgery only to have the surgeon close them up during surgery without removing the prostate when they find the cancer is already well outside of the organ. The reality of his surgery could be  that the surgeon will have to cut such a large margin that saving the nerves is unlikely as well as part or most of his splinckter. Your husband could be facing the loss of all sexual function and continence which will have a huge effect on his quality of life going forward. I am sorry that he will not listen to anyone other than his URO but he should know all of the possible outcomes with all treatments for his cancer, then make a rational decision about going forward.

Posted 10/2/2012 8:01 PM (GMT 0)
Oh, Worried...I am so sad reading your situation.  Many of our ladies have responded to your post and I still feel you should copy all responses to this thread.  Now, the wallpapering might not be a good idea, but I would put the copy in a folder on your desk marked PROSTATE CANCER.  You may need it for your own reference.  You are right, knowledge is power!  You will find lots of support on this forum.  I cannot believe his URO hasn't suggested a second opinion and a meeting with a radiation oncologist.

Reading my husband's stats shows that with a G6, he was a good candidate for DaVinci surgery.  I am so afraid your husband is not.  He is young and you have many years to be together.  It's so very important that he receives the proper treatment; however, lacking this knowledge - how can he make the right choice?  Indeed some men can be very stubborn.  My husband and I were on this journey together.  I did the research, he read, and we discussed the options.

May I please suggest you put a priority on YOUR health and well-being?  Your husband will need your help with the recovery period from the surgery.  In a week or so, the lab results will come in and another PSA test will be taken 6-7 weeks after surgery.  From that point, there may be other decisions to be made.  Please take notes for your folder on each visit you are present.  I hope he will see other doctors for their opinions.  As many have indicated, surgery just doesn't seem to be the right move to make.

I am sending along my very best wishes for both you and your husband.  Please keep in touch with us.

Peace,

Aimzee

 

Posted 10/2/2012 8:25 PM (GMT 0)
FYI- The URO did suggest getting other opinions.  Recommended we see radiologist and medical oncologist.  Even told us about a 'forum' held every week at the hospital with all the above, plus dietitian, and other support staff.  Hubby refuses.  Once he makes up his mind.....
Posted 10/2/2012 9:09 PM (GMT 0)
"Worried", I understand even more why you chose that as a "handle." I, and probably near everyone else out here is WORRIED as well. At his age and his statistics, he really must come to grips with his denial. . . is he, are YOU, really prepared to live with the potential SE's and salvage/future treatment if this beast has indeed escaped the prostate? I know you keep saying how stubborn he is, but, he really needs to get other opinions - not just from us out here mind you - but I/we can't fathom this lock down on his part, but again with all respect we don't know him. . . . .

I like Aimzee's suggestion better than mine, regarding leaving stuff out in folders where he can find it without shoving it in his face as I suggested. I would add to that a folder titled "nomogram for hubby" and leave it out as well - with a nomogram in it with HIS exact stats. . . I added the additional information you provided and ran another one for him - I didn't see what his clinical stage is in your e-mail so I used "T2C" -and also the model won't even accept a PSA above 70 (that should also say something...) so I used 70 instead of the most recent 81 he got, and here's what the model shows:


Extent of Disease Probability

Indolent Cancer N/A
Organ Confined Disease 8%
Extracapsular Extension 88%
Seminal Vesicle Invasion 79%
Lymph Node Involvement N/A


Sorry if all of this from me/us is making you feel worse - it's the amount of care for you both. . . . .
Posted 10/2/2012 9:22 PM (GMT 0)
As Yooper so well posted looking at the probability stats, your Husband has only a 8% chance his cancer is organ confined. This means a 92% chance that the cancer is already out side the prostate and the surgery will most likely fail him. After surgery he will still face hormone and radiation treatments that could be done now but he will have to live with the quality of life side effects of his failed surgery. A Gleason 9 diagnoses means he has the most aggressive prostate cancer a man can have. There has to be some way to convince him to look at more treatment options that are more likely going to curb the tumor.

Terry

Posted 10/2/2012 9:30 PM (GMT 0)
WorriedL

What a tough situation. You know your husband. We cannot really tell you how best to handle that situation.

I can't remember for sure but I thought there were studies that indicated surgery might still be very helpful even for cases like your husband's. You are still "debulking" the situation. You get rid of MOST of the cancer and this buys more time.

Perhaps someone else remembers the study or can speak about it in a more knowledgeable fashion. Or maybe the debulking idea has been... debunked?

Good luck to you.

Mel

Posted 10/2/2012 9:41 PM (GMT 0)
Mel, as anyone knows the surgery is no walk in the park.  There is the time element involved which would then delay treatment from other sources, right?  Accepting a diagnosis of any kind of cancer is mind-blowing.  For some, the denial stage lasts much longer than is safe.  I hope Worried is able to discuss this matter and not jeopardize her marriage.  For some, praying might help OR conversation in person with another doctor or male relative or friend.
Posted 10/2/2012 9:44 PM (GMT 0)
Aimzee:

Your key point is:

>>>>>>>>>

 I hope Worried is able to discuss this matter and not jeopardize her marriage.

>>>>>>>>>>>>

I agree 100%.

I'm sure Worried realizes that we are not medical professionals and hopefully she can gleen enough information from our comments to fashion some good questions for the experts.

Hopefully they will do further consultations.

Mel

Posted 10/2/2012 10:00 PM (GMT 0)
You know, as close as Ron and I, I don't know if he cried when he received his PCa diagnosis.  Maybe some men do something physical to let out anger.  Or maybe some just brood or completely withdraw?  Worried, once your husband accepts his serious diagnosis, things will be easier?  I certainly hope so.

Peace,

Aimzee

Posted 10/2/2012 10:15 PM (GMT 0)
Here's a link to a Mayo Clinic web page about prostate cancer surgery. In it, they discuss debulking:

www.mayoclinic.com/health/cancer-surgery/CA00033

Here's a link to a 2006 abstract about the benefits of debulking:

www.ncbi.nlm.nih.gov/pubmed/16952615

Both say it can be beneficial to make further treatments more effective. Dr. Myers also mentioned it in his book favorably, if I recall correctly.

Two more things: You might want to get a final PSA reading before surgery to have another number for doubling-time calculations.

And remember - there is always the possibility that the Gleason score will go down after surgery. It happens, and some folks on this board have benefited by it.

But that's a slim hope and it would be far better to get additional opinions.

Nellie
Posted 10/2/2012 11:23 PM (GMT 0)
Thanks for all the supportive posts.  Rivierie- thanks for the links about de-bulking.  This is a good bit of hubby's thinking.  Though he still seems to think he may have gotten things early enough.  He believes that because he's had no symptoms (to his way of thinking) that it can't be that bad.  I am fully aware of the numbers- have run the nomograms, etc.  But I have to let him decide- it is his body.  We have discussed the side effects- especially E D.  Our relationship can handle that.  He does not like the idea of permanent incontience, but feels that 'getting it out of him' is worth the risk.  I am not going to push the issue of getting a second opinion any more.  He'd really resent and get angry at me if I 'put things out for him to read'.   The surgery WILL happen one week from today.  We had the pre-op hospital visit yesterday.  He's still not fully 'aware' of what the surgery will be like- had to have me re-explain about being intubated after we got hom last night.  And today he told me he wanted to know when his IV could be removed (he wants it out before he leaves recovery due to his fear of needles- told him that won't happen- lol).  He sees the catheter as an embarresment and a bit of a physical pain- but really more of an embarresment than anything else.  He won't talk to me about Kegels- I don't know if he is doing them.  I figure I can push that more after the catheter is out. 

Thanks again. 

Posted 10/3/2012 12:07 AM (GMT 0)
I was a surgery misfit - defied all the predictions and spent 4 nights in the hospital after DaVinci. There was not a specific reason, other than it took that long for nausea and balance problems to subside enough for me to meet discharge standards (if I tried to walk more than a few steps, I got very dizzy, puked, and collapsed).

My cath was in for 7 days. A real pain. I had bladder spasms, so had to wear a diaper over it to catch the constant leaks around the outside of the tube. Nothing embarassing, since I did not get out beyond a small private park near my apartment. Cane in one hand, bag in a shopping bag in the other. I have never regained continence (leak free, pad free), but with months of kegels and walking, it got to be manageable now (35 months after surgery for me).

The IV was in for three days, but finally collapsed a vein, so they took it out and switched me to oral meds, but had to time them apart from my walking attempts, lest I lose them.

He really must consider doing kegels now. That and getting out to walk a lot every day, as having the pelvic floor muscles in shape before surgery could help a lot after.

I was 56 at surgery, and was in very good health, perhaps 15 pounds over ideal weight? No symptoms, no issues. None. Finding it was an accident of a lab test done "just because they were doing others".

Posted 10/3/2012 12:10 AM (GMT 0)
I hope that in the next week, you guys can find some time away from cancer. Maybe a movie, maybe a special place for the weekend, some fine dining, some walks in the park, and of course as much cuddling as you can handle.

Life will be different after next week. Sex will never be the same. Your husband may not respond well to the changes in his life. Could be some depression. Coud be some personality changes. He may appear to be shutting you out. But he will need you by his side to support him.

Life will go on. Take it one day at a time. Don't get too far ahead.

Good luck and stay with us. We are here for you.
Posted 10/3/2012 12:46 AM (GMT 0)
What makes you so sure it is not contained? IMO,You have read so much and have had so many opinions, from so many forums and people, you are convinced of the "collective wisdom" of non medical personal, some quite knowledgeable. but how many have performed 1000 Di vincis with 1000 results. It, the collective wisdom, may be right. And then again it may not be right. For the most part forum participants have had a bad draw and the bad news trumps the good. There are many, many, PCA survivors who get the disease, deal with it and never,ever signed up for a forum. Some sign up for the forum get the info, support, etc, and then go about their life, never looking back. There is no right or wrong here. If there was we would all be doing the " right". There are no told you so's here. Its a complicated disease, Heck its a complicated existence. To give you a guide, I would say this. You have been married 35 years. How has his decision making been thru out that time in all the areas of life a married couple experience's. Bottom, bottom line is as Purgatory said. " It is his body" There is a lot to be said when a man picks his surgeon, has faith in him and turns the corner on doubt. You need to grab his faith and take this journey with him. Again this is my opinion period. Take it for what its worth. He will be fine…...
Posted 10/3/2012 1:25 AM (GMT 0)
Worried,

You mentioned that your husband's urologist did recommend he meet with a radiation oncologist and a medical oncologist. That was wise on his part. However, for the urologist to proceed with the surgery, knowing your husband has not done anything else that he recommended, seems quite unwise in my opinion.

My husband is only a G7 (4+3) and the urology oncologist wouldn't even consider surgery until they debulked the tumor via hormone therapy. Once the tumor was debulked, he would consider the surgery ONLY if my husband's bladder was to be removed as well, since the scans showed the cancer encroaching his bladder. His thoughts that anything less would be unethical on his part.

We got a second opinion. The medical oncologist's first words were "Please tell me that you are not considering having this surgery." It was our confirmation to back up the research I did, and to cancel the surgery.

I know I took the long way around, but my point is your husband's doctor is willing to overlook that his own recommendations were ignored and that concerns me.

I know that "get it out now" mentality. We had it too. However, no surgeon would "get it out now," so we had time to research while waiting on the hormone therapy to do its work. We were even angry that no one would remove his prostate. Very angry. I threw my anger into research. The research was priceless and the hormone therapy debulked the tumor enough so that my husband was a candidate for radiation. We were dead-set against radiation in the beginning. Funny how time changes things. I am so thankful that we were not able to find a surgeon who was willing to "get it out."

I truly sympathize with the position you are in.
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