What is wise advice for newbies or people facing salvage therapy choices?

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zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/1/2010 2:05 PM (GMT -6)   
Maybe the real advice is learn all you can from every possible source you can find, but don't make your treatment or choices based solely upon what some other patient has done...this is PCa... you cannot rely on anything of PCa with totality, nice to know but don't do salvage or a particular treatment just because someone else herein has done it...don't do it because someone herein posted plenty of times...doesn't mean much.  Forget the cumbye-ya for making a decision on a PCa treatment, this is time for serious consideration and reflection by the agonizing patient who can easily be swayed by public opinions or even a particular doc, without knowing enough to make their best decision and thus could be rushed into whatever....and come Monday morning live it thereafter, and maybe learning about things that could have made significant differences to them, thereafter.
 
Your docs don't even agree on how to treat the same patient as documented by many others with PCa and other cancers or diseases. Too much is unknown and grey areas, not nearly enough specifics to measure collective data and make your life decision, but we end up looking at all the nomograms, partin tables, scans, collected data and hope they are good clues or we take the advice of whatever Doc-Z says is the way or his way to treat PCa. Realize it is still a crapshoot to some reasonable degree, just analyze failure rates or reoccurances, salvage therapy statistcal odds of possible cure??? How do they measure cure and is this an accurate assessment or is it usually flawed????? How do you assess cure rates in general, is it guaranteed after 10 yrs. of non-detectable psa levels??? How many choices are there, are there methods the general public is not told about????
 
Although all of  us PCa patients would like to be of help to others whom have maybe no idea what is being put before them, in our zest we will be giving biased information in most cases or just because one therapy seemed to work well for a patient (only 1-2 yrs. out maybe) does not mean it is golden either, it might or could be, but it is unknown as to yr. 5-10 thereafter. (for now anyway)  Also, one patient with a particular disaster looking treatment does not mean that it is that way in general or would be for someone else and can happen in any treatment/modality, even in biopsies and other testing things.
 
Good idea:  read, study, analyze, compare/contrast, use internet/books/tapes/testimonials, seek mulitple opinions from Docs or others, question everything put to you, ask more questions, seek truth and facts, verify anything you can (tests, opinions, data etc.), get copies of any medical records and learn to read them, don't be afraid to change doctors or  do whatever becomes necessary for your best care or outcome to go forward, realize in some cases cure is not even possible, but control might have many possibilities to consider.
 
*caveat any comparison to anybody on this thread is only co-incidental and not the intention of the bloggo writer, void where prohibited, not valid in New Jersey, 2% tax will be added, 25.9% interest charge after 30 days, copyrighted, patented, Happy New Yr.yeah
Youth is wasted on the Young-(W.C. Fields)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/1/2010 2:42 PM (GMT -6)   
Zufus, I kind of think that what most us do here on HW, is talk to doctors and specialists, research treatment options and odds, etc. We come here to share said information. The sharing of personal experience I feel is an important part of this process. Others are very interested and take comfort in knowing that another brother has made it through a treatment or procedure. They are interested in seeing the results or failures.

It's a given that each person's body and cancer reacts in its own unique manner. With PC, there have literally been millions of cases over the years, so there is a lot of stats on results with most commonly used treatment methods.

As far as biased opinions go, I think any opinion one gets, whether it be from a top doctor or researcher, a book writer, or a guy among us, myself included, would have certain built in biases, that is human nature. Not convinced there is such a thing as a non-biased opinion about anything.

I think from your post, that you are missing the point about why so many men seek a place like HW, and why they find knowledge, comfort, support, and care from the folks here. It's not meant to be a cutting edge medical research center, none of us are qualified to do that, or replace a real doctor. I think most people understand that too.

Hope you have a really good new year.

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
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

Post Edited (Purgatory) : 1/1/2010 8:51:09 PM (GMT-7)


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/1/2010 5:02 PM (GMT -6)   
Zufus you make some very valid points as do you David. I don't think I have seen any Healingwell member tell another "do this". Rather, posts are more along the lines of "In my case this was done or suggested". The great benefit of Healingwell is that members have the same mantra and that is "get more than one opinion" or if surgery is urged by a surgeon for example, they are advised to get another opinion from a radiation and/or medical oncologist. Differing treatments are discussed and commented on and discussed with the good and bad detailed. (no sugar coating here). But the central theme for as long as I have been here is, as Zufus' has stated, learn as much as you can before deciding anything.
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


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 1/1/2010 6:11 PM (GMT -6)   
I'm not sure I could give any newcomer any specific advice except something that's taken many years to sink in for me...the more I learn about something, the more I find out how little I know. Knowledge is important. Applying the knowledge you have to your own situation is just as important. Research. Research some more. Ask questions and discuss.

-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving significantly with Trimix at 7 months post-op. Oral ED meds didn't do much.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 1/1/2010 8:57 PM (GMT -6)   
I'm not sure the answer addresses the question. If someone is facing salvage radiation, it would seem the die is pretty much cast. One would assume they have had surgery, a PSA approaching .5, and a desire to try and fight the disease another way.

How many second opinions and how much advice do they need ? If they ask about some of the leading radiology centers, some of the possible side effects, or whether IGRT is superior to IMRT, then I suppose we could give direct answers based on our experiences, but really, there is not much else to say.

Sometimes I think we make this thing too complicated.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/1/2010 9:24 PM (GMT -6)   
Purga-story (David) Are we spelling zufus incorrectly (again)=zufas, looks like I mispelled yours too, I guess these things just happen on HW (LOL)....combye-ya anyway, got marshmellows?
Youth is wasted on the Young-(W.C. Fields)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/1/2010 10:17 PM (GMT -6)   
sorry zufus, absolutely not on purpose, fingers typing faster then my eyes I believe. I will get it right one day
 
P.S>  went back and corrected the spelling tonight.


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

Post Edited (Purgatory) : 1/1/2010 8:51:51 PM (GMT-7)


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 1/2/2010 11:59 AM (GMT -6)   
 
 
From reading the latest posts I sort of feel the way Goodlife feels I am now going to start radiation and feel it probably is not local, but do I want to take that gamble.  The doctors all agree on radiation and I have had more opinions that I can stand they all feel the only shot at a cure is radiation other than that it is wait for a tumor to appear and then try to treat it.  I went last week  and had all the necessry tests  to start radiation just waiting for them to set me up with this modiality conference where I talk to different cancer doctors and then they discuss the best treatment which I know will include radiation but just feel better knowing I gathered as much information as possible on this monster that does not go away.
 
Hope you all have a healthy and happy New Year.
 
Jerry1
Age 70
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive 12% of sample,
Gleason Score 4+4 =8  Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Post Gleason report  4+4 = 8 Lymph nodes on both sides negative
margins Negative  Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/19/08 dry no more pads
12/2/08 first PSA <0.1
 3/6/09 6 Month PSA 0.0
6/3/09 9 month  PSA 0.1
7/14/09  PSA still 0.1
10/15/09 PSA 0.3
10/26/09 surgery to remove 3 clips in bladder neck  
11/16/09 PSA 0.3
12/14/09 PSA 0.4 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/2/2010 2:33 PM (GMT -6)   
Jerry, I think you are making the right decision for you in your journey at this point. I had recently completed my Salvage Radiation in November. It was a struggle for me to come to terms with doing it (due to an unfortunate prior radiation event). I knew the odds were low in my case, 2 radiation doctors told me the same thing, but at least there is the chance it can work, and its the last curative approach I can take. I too, didn't want to run the number way up high, and then try to deal with it.

I hope you get through your fine without any major side effect issues.

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
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

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