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Posted 4/23/2009 1:20 PM (GMT -8)
Hello!

This is my first time to talk to you all.  I'm the wife of someone who was diagnosed in Feb. 2009.  Biopsy done Feb 10 with 2 of 12 cores showing cancer- Gleason 7 and 9.  The dr couldn't do the surg until Mar 16.  Went to hosp and was prepped for surg with the IV etc.  Then was informed the DaVinci Robotic Surgery device wasn't working.  Was told it would be "a day or two" before it would be repaired.  Because of my husband's schedule he couldn't have it done later than that date until after the 27th of Mar.  So, we decided since they didn't have anyone on hand to fix the machine if it broke down and the dr didn't bother seeing us we'd go elsewhere.  Sometimes these things happen for a reason.  Went to another very experienced dr whom we both liked- but he said he would not do robotic surgery since the gleason was so high because he needed to "feel"

the tissue.  Scheduled the surgery for 3 weeks later on April 13 because he was booked up until then.  In the meantime decided it might be good to confer with another dr to see what he says.

Went to MD Anderson and the dr there said the same thing the last one said- he would not do robotic.  So went ahead with conventional surg but had a couple complications so was in hosp for 6 days.  Stomach wouldn't "wake up" and didn't get food because of that for 7 days counting thetwo days prior to surg.  And fluid leaking out around the abdomen drain tube.  Anyway, the pathology showed prostate, tho not enlarged, was completely full of cancer which had broken out into the fatty tissue around prostate and one lymph node and possibly more, since all weren't removed.  Now facing chemo/radiation/hormone therapy.  Since only two cores showed the cancer in the biop and at surg two months later, prostate is full of cancer cells, is this a very fast growing cancer?  He's scheduled to get staples out Monday 27th, and catheter out Monday May 4 and will see oncologist May 4.  Please tell me of any similar experience or knowledge whether this cancer needs to be zapped right now if any's still inside him.  I'm very worried.    Thanks, NellWAM 

Posted 4/23/2009 3:50 PM (GMT -8)
NellWam,
That pathology report is very serious. My understanding is that a biopsy is never perfect. They take small bits from different spots on the prostate and it is a hit and miss situation. There are some folks on this forum who had many negative biopsies before finally finding the spot with the cancer. I don't think that PC could spread that fast in just 2 months. Your husband should start salvage treatment ASAP. I have read on this forum and other places that it is best to start immediately while the cancer is weakened from the surgery. I wish your husband the best of luck.
Posted 4/23/2009 3:52 PM (GMT -8)
Sorry that you are here...but this is a great place for advice.  The 12 core biopsy is more a "shot in the dark" than scientific.  Given that one of those cores scored a Gleason 9, I'm not too surprised that cancer was more prevalent than 2 of 12 would initially indicate.  You ask if a "prostate full of cancer" means that he have a fast-growing cancer.  At this point, I'm not so sure whether fast-growing is important.  The G-9 means that he has an aggressive cancer...so I suppose that aggressive and fast-growing are somewhat synonymous.  The important thing is that you know have a clear picture of what is going on down there.  Continue to see opinions (MD Anderson is a great place) on what the next treatment step should be...and best of luck.

Posted 4/23/2009 5:44 PM (GMT -8)
NellWam,
You are in a very good facility where the expertise is second to none. I received alot of comfort and support from my wife and that really helped me through the process of researching and understanding the situation, deciding treatments and recovering from surgery. We all know the stresses and anxiety that you must be experiencing. At some point I decided that we had done all of the research we could and we had to hand it over to the experts that we chose, and to God.
Best wishes,
TeddyG
Posted 4/25/2009 7:14 PM (GMT -8)
Hi NellWam, I concur with the others who have written. You have done the right things already. It was wise to go to MD Anderson, and it was wise to go the surgery route. Now, because of the pathology you know where you stand. Even though the pathology report is disappointing because the cancer was not confined, the bright spot hopefully will be that it has only traveled locally within the same general area. Now that you have had the surgery and said good riddance to the mass in the prostate, you can still use the radiation to kill any remaining cancer cells. There are no guarantees, but on the other hand there is a lot of success stories and the stats are still in your favor. I have a friend that had surgery that did not get it all, but the radiation did - that was more than 20 years ago and he has had no recurrence - he is a strong and healthy 75 year old. So keep your chin up and continue the good fight. God bless.
Posted 6/3/2009 7:07 PM (GMT -8)

Hello Prostate Cancer Survivors: 

It's been a while since I've written.  First, thanks to the ones who answered my request for

information about my husbands numbers etc.  He's totally recovered from the surgery but still has some incontinence- enough that he wears a Depends WITH a pad.  Of course he's had several leakages- hence the double protection.  He's to undergo 40 radiation treatments but the drs wanted him to get more control of his urine prior to starting since the radiation will definitely irritate that area and possibly have more control problems.  We've been concerned

that it's taking so long to get started on the radiation while the malignancy is aggressively spreading inside him.  But we'll just hope that isn't in God's plan for him and the radiation will

nip it in the bud.  Only time will tell.  The hardest part is trying not to worry.  I guess once diagnosed with pc, worry becomes a major part of your thought processes.  Thanks for sharing experiences and opinions with me!  It sure helps to know others are having the same problems, doubts and feelings.

Thanks again!

NellWAM

 

Posted 6/4/2009 4:06 AM (GMT -8)

Greetings, Nell.  Prostate cancer has been my first major illness - when I went to the preop and told the nurse that I had never had a broken bone, never had a stitch, never been put asleep, never a major illness - she was blown away.  One thing I have had to learn is patience.  It is very hard when you know you have cancer and want to get it out of there.  The 6 weeks between biopsy and surgery seemed like 6 months. 

The note of encouragement I would give you is that there are plenty of guys out there with similar stats who are alive and well many, many years after successful treatment.  Don't be afraid to ask your doctors lots of questions and give them a little push back when you think you need to.  I am grateful my doc told me right up front to ask lots of questions and never hesitate to contact him at any time.  I'm sure you have a good team of medical professionals and will get excellent treatment. 

Please keep us posted.  We are concerned about each and every one of our brothers - and sisters - that are dealing with this disease and please know we are on your team cheering you on every step of the way.  David

Posted 6/4/2009 12:04 PM (GMT -8)
The incontinence will go away with time...be patient. If it is a fast growing cancer, find which from of prostate cancer it is, there is more
than one type.

Joe
Posted 6/4/2009 8:54 PM (GMT -8)
NellWam,
Sorry to hear about your husband's report. Gleason 9's are very difficult to cure with just one type of local treatment. A combination treatment ie. surgery, radiation, hormones are usually recommended for a G9.
JT
Posted 6/5/2009 6:50 AM (GMT -8)
Many of us know that awful situation of imagining cancer eating away inside of us and growing minute by minute. But that is imagination, not reality. Yes, there are cancers where even a two week delay may be too much, however prostate cancer is not one of them. If your husband’s doctors thought there was any chance that delay would add danger, do you think that they would care a bit about incontinence? Try to take a deep breath and put that ravenous wolf model of PC back in the story book. As I understand it, immediate follow-up radiation, adjunctive radiation, was more popular several years ago but did not prove to be better than radiation started three or even six months after surgery, salvage radiation.
Posted 6/5/2009 8:20 AM (GMT -8)
Some prostate cancers are very aggressive (most are not), just so you know. I have a rare aggressive prostate cancer, went after my bladder, and my hip bone all in 2-3 months.
Posted 6/6/2009 3:28 AM (GMT -8)

Among the replies, John T great information...so for others that are reading this you have a heads up on the real world of PCa. If someone knows their pathology report and hopefully had it reviewed by one of the few experts that exist, so that you know up front do you have gleason, 8,9 or 10 and how much volume-% of PCa and also major importance is which of the "18" variants of PCa were you found with, there are a very few of them that are actually way worse for prognosis and possible cure rates to begin with. A proper assessment prior to 'hip shoot' for doing surgery is critical if you wish to consider having realistic chances for 'curative' surgery. This is among reasons why Dr. P Walsh and other leading surgeons will not do surgery on patients with Gleason scores maybe even as low as seven. Nothing for prostate is a guarantee as low risk patients sometimes are not cured or have recurrance, why??? Diagnosis and even assessment are far from perfection and PCa can travel throughout your body via lymphnodes probably at any given time (not what anybody wishes to hear). So, a person looking at any treatment has to consider 'all factors' including side effects, control factors, risks, travel, timing, and even costs perhaps. Gets unreal in making the decisions, but worth all the time you put into it.

Best to you in fighting this battle, I got 7+ plus yrs duty thus far and diagnosed with high end-very risky stats.  (bpsa  46.6  12/12 biopsies-75-95% vol in everyone, gleasons 7,8,9's and started with total urinary blockage because of PCa....drugs have given decent control after unique radiations and ADT3 useage)-I got 8 opinions the best one was from the leading robotic surgeon (1st guy in USA) "I will not do surgery on you" the prior surgeon I saw was guaranteeing a 'cure'....beware of sales tactics.


Posted 6/6/2009 5:45 AM (GMT -8)
They usually want to wait at least 3 months after surgery to start radiation to let you heal up.   You didn't mention anything about hormone therapy being started.  I would think that would be recommended.   You can start that anytime, and it shoud stop any progression that might be going on...plus it should weaken any  PCa cells in the area so radiation can have maximum impact.

Hang in there!

 

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