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duomtn
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/13/2009 11:11 AM (GMT -6)   
My husband has been diagnosed with prostrate cancer and he has chosen not to have any treatments done. My question is this: what is the end stage symptoms for prostrate? He is angry and scared which is understandable, but his mood swings are unpredictable. Any help or information I can obtain would be greatly appreciated. Thank you

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Post Edited By Moderator (James C.) : 12/13/2009 12:16:17 PM (GMT-7)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 12/13/2009 11:24 AM (GMT -6)   
Please include your husband's biopsy stats, Gleason scores, how many cores, what was his psa, was there a nodule felt during a DRE % cores involved. All this is included on the biopsy report. If you do not have a copy ask your doctor as you have the right to all copies of your medical tests.
We can't answer your questions without this information.
Your husband has to understand that this is not a death sentenance as 225,000 men are DXed with prostate cancer in the US every year and the vast majority die from something else.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/13/2009 11:26 AM (GMT -6)   
Duomtn,
Welcome to Healing Well one of the best places on the net to get information and support. And I am sorry you have a reason to join.
You will no doubt be helped shortly with people who have much more experience than I. It would help if you inculded some of the specifics of your husband's case so you can get more intelligent answers. Age, PSA, Gleason, . It really helps. You can see my signature below if you need a guide.
PCa affects the entire family. I wish you and your husband well on this journey,
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
. 9/27 2 months: Still 3 pads per day.
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day Experimenting with Nyquil.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/13/2009 11:29 AM (GMT -6)   
hello duomtn,

welcome, sounds like your got your hands full already with your husband's prostate cancer diagnosis.

what would help, can you post any of the information about his diagnosis, I am assuming he had a biopsy done, could you share the results of that with us, it would help us understand where he is at in his PC journey, and what stage or progress his cancer is at.

Yes, being scared, and being angry ,and often at the same time, is a most common reaction with any sane person finding out they have cancer. The best way for him not to be angry and scared is to become educated. As a general rule, getting a PC diagnosis is not getting an automatic death sentence. We have men here with very advanced cases of PC, that have their disease in check, and continue to live fulfilling lives. If his is in the early stages, he very well may die with prostate cancer, and not because of it.

The men that do best here, are us lucky ones that have loving and caring wives that watch out for us, and we work our cancer as a team together. Speaking only for myself, I would never have made it through all I have been through, without the care and support of my wife in particular, and my family in general, and the good people here at HW.

The best way for him to get over the scared part is through education about his prostate cancer. He will learn there are all kinds of treatments available, and most men do well with them. Education will take away the fear. As far as the anger, hopefully he won't stay in that stage for long. There is no one to be angry at. There is no one to blame. We all hate our cancer, trust me, but if it is in the cards for a person, then the next best thing to do is to deal with it head on.

We are here to help him, to help you, in any way you need. If he won't post or talk to us, then you talk for him through us here, we have wives, sons, and daughters that do the same thing for the men in their lives. We can do the same for you.

This is hard on you too, and his his anger gets vented the wrong way, then you get hurt too.

Please try to post some info on his case, it will make it easier for us to help and guide you.

Come back often.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


Bootheel
Regular Member


Date Joined Oct 2007
Total Posts : 300
   Posted 12/13/2009 1:09 PM (GMT -6)   
I went through the same type of denial a couple of years ago when I was first diagnosed.  Luckily I got on the the Internet and found HW forum.  They comforted me and helped me through the trying time.  Eventually I made a decision to have surgery with no regrets.  It is not the end of the world and certainly not a death sentence.  You have plenty of time to make a good sound decision as to what course of action to take.  The kind and knowledgeable people here will guide you through your journey and provide meaningful information. Good luck to you. 

Age 65
Diagnosed 10/12/07
PSA 6.3
Biopsy 18 core samples, 2 positive <5%
Stage T1a Gleason 6 (3+3)
LRP  1/29/08
Post-op
Gleason 7 (3+4)
1 positive margin (.3cm)
T2C
4/16/08- Started Bi-mix injections 
5/15/08- 1st Post-Op PSA 0.07 Undetectable
8/11/08 -2nd Post-OP PSA 0.02 Undetectable
8/15/08- No more pads as of today  Whoopee!!!
11/13/08- 3rd post-op PSA 0.02 Undetectable
03/02/09- 1 yr. post-op PSA .09 Undetectable
05/13/09   PSA .18 (ouch)
Started IMRT June 13, 2009
Completed 37 treatments July 31, 2009 (66.6gy)
11/23/09 Post IMRT PSA .18


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/13/2009 4:46 PM (GMT -6)   
Duo,
Welcome to the forum. Of course he's angry and scared and once he got the news he just knew he would be dead shortly. I would venture that the great majority of us here felt exactly like that when first diagnosed. But then the education begins and the world starts to look a lot better and you could not have come to a better place than Healingwell. The great majority of men with prostate cancer die from heart attacks, stroke, old age etc. Just look at the figures. In the US alone, 190,000 are diagnosed with prostate cancer annually but only about 27,000 will die from it in that same year. The key to dealing with this disease is to become familiar with it and know the enemy. You will find the depth of information here is outstanding and all the members (including a lot of wives) are anxious to help. As others have suggested, obtain the biopsy results and post them here. Members will explain the meaning if anything is unclear and describe the various options open to your husband. Encourage him to come here or at least read the stories of hundreds of men in similar positions on another valuable site here.

www.yananow.net/Chart-Gleason.htm

Remember knowledge of what you are dealing with is the key to handling it successfully.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 12/13/2009 5:32 PM (GMT -6)   
Duo
We are so glad that you found us but so sorry that you had to look. Yes -- many cancers are extremely frightening with a very short time between diagnosis and death. BUT prostate cancer is NOT one of those.
In fact, the biggest problem is that there are so many different treatments that have good outcomes that the choice is difficult. You might look at the permanent links at the top of the forum for many good sources of information -- especially a number of excellent books.

As others have said, every single one of us has been angry and scared -- we understand. Many of us have wives who have stood by us and made the process much more manageable. When I was first diagnosed, I thought that I had to be a brave little soldier and stand by myself -- what a fool! Now, with my wife as a teammate we confront the future together. Try to keep your husband in touch with you -- for a while you may have to be the strength of the relationship -- we understand and are here for you both.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/13/2009 5:35 PM (GMT -6)   
There are more ways to fight this than even I suspect you know about, read. Buy him a book like:

A Primer on Prostate Cancer and some others, our bookstore herein has such too. Knowledge is power, fyi I am a higher end lousy stats found patient with PCa, even had total urinary blockage from it(emergency room), so it was serious level.....so far living pretty well and coming up on 8 yrs. later, so inform your loved one it is not the end that he currently has in his mind. Enjoy his life is the message, re-evlaute what you cherish and support him, be patient don't jam it all down his throat, spoon feed perhaps by leaving the book near him somewhere with no mentioning anything else. (just one idea)
 
(The Dragon specifications)=  bPsa 46. 6   12/12 biopsies all 75-95% PCa, Gleasons found 7,8,9's (two sets about the same too), ct and bone scan appeared clear. Latest psa .8 level and been steadish for quite a few years.

Post Edited (zufus) : 12/13/2009 4:38:56 PM (GMT-7)


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 12/13/2009 5:53 PM (GMT -6)   
I am assuming he is older, at least lets hope so.  Typically at that age radiation is the way to go. I would check and see what local facilites they have.  The procedue is fairly quick if you are close by.  Best thing about PCA is most of use can do something about it and not just be a victim.   Nagging seems to be part of the process for many so don't let up.
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings.
DaVinci on 6/24/09  UCI Med Center  Dr Ahlering, long surgery based on size and location
Final was 5% one side all clear, but had a huge 90 grm prostate
Now we work on pee control, ok at night but sitting is a big problem.


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 12/13/2009 6:50 PM (GMT -6)   
We need to know the pathology stats to give any meaningful advice.  Particularly, it would be very helpful to know your husbands age, his psa and his gleason score.
 
It may be possible he can forego treatment for now and just keep an eye on things.  Or, it may be that he needs immediate radical treatment.
 
Please help us help you by giving us some stats to work with.
 
Dave
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 12/14/2009 12:33 PM (GMT -6)   
Many times the diagnosis also hinges on the persons general medical health. 2 people the identical age with virtually identical biopsy's may each get a separate recommendation.

What comes to mind is Heart health, some people simply are not healthy enough to have major surgery

The patient also has to roll the dice so to speak if they chose to wait, its a gamble either way but for some it may be the best for their situation
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 12/15/2009 5:28 AM (GMT -6)   
Welcome to you both

Don't worry about the idea that not doing anything has to be the wrong decsion at this stage. My urologist more or less told me that the first thing I should do was to do nothing. I was simply to spend a couple of weeks learning about Prostate Cancer and then come back and see him. Yes we discussed options at that next appointment, but he said that any decsions could always be changed in the following weeks, and when I said my wife and I had got a holiday booked he said that it would be an excellent idea to go away. So we did.

The time factor with prostate cancer is very different.

Nothing had to be done in a hurry.
Indeed one of the recognised treatments is to do nothing other than keep an eye on things. It's called Active Surveillance. (That's what my father-in-law has been doing for so long that he has forgotten when he was diagnosed - he thinks it was 14 years ago. Other health factors in his life such as diabetes and breathing problems meant an operation was not a good idea for him)

And if all the words and numbers etc in your husband's data (PSA/Gleason/cores etc) all look very confusing and complicated, don't worry about that either, you won't be the only one of us to fail to comprehend them. Just pop them all on your profile and the helpful folk here will explain things in easier to understand language and/or tell you were to look to find additional useful information.

We have all faced a learning curve about understanding what is wrong with us when it comes to PCa and what is going to be the best way to deal with our own situation.

My Very Best Wishes to you
Alfred

wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 12/17/2009 5:01 PM (GMT -6)   
I was hoping this person would come back with more information.
12/06/07 DaVinci and open prostate surgery after difficulties in breathing stopped the davinci.


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/17/2009 8:31 PM (GMT -6)   
So was I. So many options from no treatment (active surveillance) to all the various treatments available. Hard to say without the stats but I do hope "Duo" returns. There must be quite a few out there who think "that's it, I have a diagnosis of cancer so I'm finished"
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 12/18/2009 5:27 AM (GMT -6)   
I too was expecting more info from duo.
As I type this about 380 people have already viewed this thread, so let's hope that duo has perhaps just been reading things.

And when I first posted I remember that I had trouble finding my way back to the threads where I'd posted, so this is a sort of bump to get it back on the first page

Alfred

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/18/2009 9:05 AM (GMT -6)   
Bump again, hate someone not back with us based on initial statements. Help was definitely needed. Looks like we are all on standby
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 12/18/2009 9:40 AM (GMT -6)   
Purgatory said...
Bump again, hate someone not back with us based on initial statements. Help was definitely needed. Looks like we are all on standby


Being it was from a wife not the husband it's understandable. Not every guy will join a forum such as this and may tell his wife he doesn't want such help. It's his right after all. Plus I'm sure his is an initial reaction and he will keep seeing a urologist. After being slapped with first hearing about incontinence, impotence, catheters, major surgery, radiation ..etc does make your head spin and his initial reaction to all of that is not surprising. I'm sure many can identify with that from dx day.
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