A little help please.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

LuvMyDAD
Regular Member


Date Joined Dec 2009
Total Posts : 315
   Posted 6/30/2010 10:50 PM (GMT -6)   
Hi guys,
I should be asleep by now but I have had thoughts on my mind for a while now and I wanted to share them with you, maybe you guys can help me.
Okay, so my dad at five weeks post op came back with a PSA of .55 which is relatively high. He began radiation in April, 72 gy to the entire prostate bed. He just completed radiation three weeks ago.
Every Friday he met with the Rad Onc, and on the last day he met with the Dr. before completing his last two sessions my dad asked him what his prognosis was. The nurse excitedly told him, "ohhh Dr. dont worry you will be fine, over 90 percent your psa will drop to zero,  you will be here for a  very very long time." The Dr. then followed up by quoting a Stephenson study conducted on SRT and said there is a 50-70 percent chance his psa will be at zero and remain there for 4 years. Okay now goes to my thoughts:
1) My dad is being treated at Sloan Kettering, which according to their  nomograms he has over an 81 percent chance that the SRT will work. I don't rely on those junk nomograms because I believe they are completely inflated. I looked at the so-called nomogram for success of RP and yeh the cure rate is definitely inflated.  I would also love to believe the nurse and the doctor but I too believe they are way too optimistic, if not misleading.
2)Researching most of the ppl on this forum and other forums who have undergone SRT, it seems over 90% of the time the treatment fails. Where are all the people that are supposedly benefiting from SRT? Are they going on with their merry lives? Sorry, I dont mean to sound bitter-- but I just keep running into SRT failures. Its so hard to be hopeful when I feel there are no signs of hope.
 
Thanks for listening.
Father diagnosed Nov. 9, 2009
Open radical prostatectomy Dec. 21, 2009, post op pathology report T3a, Gleason 7
5 week post op psa .55
Combination therapy, hormone and IMRT. 40 sessions 72gy.
Hoping and praying for a cured dad.


Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 665
   Posted 6/30/2010 11:17 PM (GMT -6)   
I'm not sure how to answer you, LuvMyDad. I looked over at yananow at cases of surgery followed by radiation and didn't find a ton of successes, at least in the longer term. The encouragement I got looking at those cases was this: most were still around quite a few years later to talk about how it had worked for awhile and then gradually failed. For the most part, it appears that most prostate cancers are fairly slowly developing, even if radiation doesn't work. And, as I think everyone who does SRT would say the reason they are doing it is, it is your only option of a cure as of 2010 as a salvage treatment.

I think that the Sloan-Kettering nomograms are based on actual statistics, collected over quite a few years and cases. I'm not convinced that they are inflated. If you have evidence, I'd be interested in hearing about it.

I think that a lot of the posters on this forum are more likely to be the problem cases, since the readily cured and moved on folks may not have as much motivation to be here (but I don't know that for sure).
It grieves me that you are losing sleep over this nasty illness. I'm praying for peace for you and healing for your dad.

Maybe some guys out there that are the SRT success stories will post here and cheer us up?
Jeff
Gleason, 3+4; PSA, 7.9
Robotic Prostatectomy, March 2008 (Age 48 then), nerves both sides spared, post surgery analysis confirmed 3+4 Gleason,
pT2c, prostate 60.2g, margins: negative; perineural invasion: present; lymphatic invasion: present; 3 lymph nodes removed, clear; seminal vesicle invasion: absent; Gleason 4 comprises 5-10% of carcinoma
PSA consistently <0.1 since surgery until Oct 09: 0.1; retested Oct 09, <0.1,
Jan 10, 0.2
retest Feb 1 confirmed 0.2
CT scan, bone scan Feb 10 both clear
PSA after, 2010: March, 0.17; April, 0.17; May, 0.24; June, 0.31
Starting salvage IGRT on August 4


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 7/1/2010 5:46 AM (GMT -6)   
Question: where are all the people who are supposedly successfully treated with SRT.

Answer: mostly moving on with their lives.

This forum represents a very small percentage of the PCa population...remember, over 200,000 men are diagnosed each year with only a handful showing up here.

Your dad's PSA at the beginning of SRT was .55 and he is waiting for his first PSA after SRT - is this correct? SRT was finished 3 weeks ago and my understanding is that it can take a few months before the true "results" of the SRT are known. I know this is easier said than done but please try not to read so much into statistics and nonograms - your dad is not a statistic.

The waiting is so hard but there's nothing else you can really do at this point except wait to see if the radiation has done it's job - and that will take a while to know.

In the meantime, you and your dad are in all our thoughts and we look forward to hearing good news from you.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/1/2010 7:49 AM (GMT -6)   
Basically it boils down to and most docs don't want to admit to it and they would lose alot of business by truthfully disclosing the negative side but factual side of PCa. These docs don't have any way of knowing with certantity and definitively with our current testing, nomograms, Partin tables, any USA scanning methods etc. They can get an opinion and maybe a fairly good opinion on a particular case, how good???? Ct and bone scans are close to useless and especially on lower stats patients (wasteful $$$), not my opinion but Dr. Strum and others. I had clear scans with ridiculous stats, Partin tables and nomograms say 'you lose' but scan says nothing found(glad I atleast know the truth of the matter, which none of the docs wanted me to know or inform me of such education). Scans have big limitations as do alot of protocols, drugs and anything to do with PCa.

Are patients ever over sold or does bias or even agenda exist in medical fields, truthful answer...? They don't know where PCa could possibly lurk in a patient, could have traveled via perinureal invasion or other means, although maybe a person had even clear margins from surgery and such. Dr. Barken has mentioned 'micro mets' and the fact that it is possible for patients to look clear and cured for even a decade and then fail with PCa (showing up enough to detect in essence). It is rare but even in a few cases 15 yrs. is not a guaranteed cure (should be but is factually not 100%) This is the real world of PCa. Your experts cannot be expert enough because of the technology, how many will admit it? Well Dr. Barken and some others have mentioned the issues in defining patients assessment. Based upon what we see going on in patients at various PCa levels, tends to confirm exactly what Dr. Barken is mentioning. You would prefer the Twilight Zone over this real world.(lol) I know not what you wanted to hear.
Youth is wasted on the Young-(W.C. Fields)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/1/2010 8:15 AM (GMT -6)   
Luv

Of all the answers posted so far, I agree with and back Sephie's answer to you. It's way to soon to know if the SRT was succesful or not. There are so many factors, case by case, that help determine if SRT is going to work long term. A lot of variables.

Unfortunately, SRT doesn't give an immediate answer, my radiation oncologist told me it would take at least a year of 3-month PSA tests post radiation to get a good feel for the direction. I am about to have my 3rd reading, the 2nd one was a "zero", hoping the next one will be too.

Good luck.

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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 7/1/2010 8:25 AM (GMT -6)   
LuvMyDAD said...


2)Researching most of the ppl on this forum and other forums who have undergone SRT, it seems over 90% of the time the treatment fails. Where are all the people that are supposedly benefiting from SRT? Are they going on with their merry lives? Sorry, I dont mean to sound bitter-- but I just keep running into SRT failures. Its so hard to be hopeful when I feel there are no signs of hope.



Thanks for listening.


Forums are the first place you should go for information and the last place to get an overall picture of anything. I've been on various forums for 15+ years (remember the newsgroups and BBs?) 3 types of people go to forums, 1. folks learning/researching something new (car/disease/hobby) 2. folks having issues with the above. 3. people who stay on to help newcomers.

IMO a very high percentage just move on after everything becomes normal. A few of these drop by once in a while, I've seen a couple of posts lately of the "just dropping back in to say hi" type from people who have had 0.0x for years.

I do however agree about the nomograms, I wish they were accurate but am not convinced.
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04
05-03-10 1 week without pads
06-07-10 PSA <0.04


BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 7/1/2010 8:58 AM (GMT -6)   
LuvMyDad, I don't know about the nanograms, but I do believe that Drs give overly optimistic opinions about the result of treatment. I saw 3 doctors about may planned SRT, 2 told me that treatment would provide a 50% chance for a cure. One, I believe gave me the straight scoop, said 30-40%. That being said, I believe that we have to be optimistic and hope for the best. Your Dad may well be cured. Try to relax. I know it's hard. I have always been a "glass half empty" guy myself. BB
Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31
psa May 10  .50

Aril 10 MRI and Bone Scan show lesion on lower spine, false positive. 
 
Started HT 5/25/10 with 3 month shot of Trelstar. SRT scheduled for late July


Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 7/1/2010 9:53 AM (GMT -6)   
These are guys just on this forum, HW, who had salvage RT more than a year ago and who were doing fine (no PSA progression) at last report. Some are, or were, also on HT, which muddies the picture. Names and dates when they ended SRT:

Galileo (me!)....March 2007
tc las vegas....August 2007
Hawkfan75....October 2007
doting daughter....April 2008
Mozart 250....May 2008
Norskie.....June 2008
Magaboo....December 2008
bob & wife....December 2008
dsmc....January 2009

I apologize if I missed anyone or screwed up a date.

and there are others who had it more recently and got good results back. Unfortunately, not everyone has enjoyed the same fortune, but a lot of guys seem to be doing well after salvage RT.

Sephie's point is well taken. Most men who are successfully treated just move on, I'm sure. I hope I can do that before long, and just report back once a year or so.
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
pcabefore50.blogspot.com

Post Edited (Galileo) : 7/1/2010 10:09:22 AM (GMT-6)


bsjoplin
Regular Member


Date Joined Feb 2010
Total Posts : 308
   Posted 7/1/2010 10:21 AM (GMT -6)   

Luv:

I’m hoping you can find some hope in all this bad situation.  Seems kinda strange to me that you don’t want to gain strength from the health care professionals, but would rather glean it from guys like me in a forum (me, I’m an electrical engineer).  But we all have our stories, and maybe that’s what you need to hear now.  Unfortunately, the forums are NOT full of  “success stories”;  most of those guys hung around while they were needing help and hope, and after a good experience, have since dropped off the forum.  A few are still hanging around, what we in AA call the 12 th-step people, using their experience, strength and hope to built up those like me still going through the process.

But you say there are “no signs of hope”. My position now is very similar to your Dad’s, as I just completed radiation last week, and what I’m hearing from my doctors and from this forum is all kinds of hope.  I had a cancerous prostate removed, and have since radiated the area to kill what is probably a small amount of extra cells that jumped off before we got the bad gland out of there.  It will take several months to determine whether all the bad cells seem to be dying off, and the PSA test will be a sensitive indication as to how completely the local radiation did the trick.  In the meantime, there is essentially nothing I can do to alter my outcome [just stay healthy], but I’m in no pain, and am almost over my surgery and radiation side effects, so I plan to enjoy my week.  I’ve got a good job, good family, good friends, a new granddaughter who is the sweetest thing i've ever seen, and the cancer is just  not something I choose to dwell on.  Hopefully, you too can get to that point.

Wishing you and your Dad all the best

bob


Age@dx: 55

5/05             PSA test 1.8  --12/19/07  PSA test 3.7  --7/25/08    PSA test: 4.7

8/26/08        1st Prostate Biopsy: 3 samples out of 6 have irregular cells

11/25/08      PSA test: 6.5

12/11/08      2nd Prostate Biopsy :  of 12 samples, 3 are cancer, and all other 9 are irregular.  original NJ lab sent samples to Johns Hopkins for special reading.  Gleason 3+3=6.  now:read book, and think about options: radiation, surgery, etc

1/22/09        Radical Retropubic Prostatectomy.  main issue was use of BOTH pre-donated units of blood during surgery, and then required 2 additional units in recovery, before going to room

1/25/09        Released from hospital. No drive, no lift >5 lb

1/28/09        Pathology results from removed tissue:  Cancer was seen on 10% of gland, lymph nodes & SV were benign, nothing seen outside of the prostate.  One area of cancer extended right up to edge, but not beyond.  Gleason was re-typed as 3+4=7, staged T2c

2/13/09        PSA=0.1

3/6/09          6week appt, start back to work Monday, 3/9.  script for Cialis

6/8/09          PSA=0.1

10/9/09        PSA=0.1

2/10/10        PSA=0.3 discussed possibility of radiotherapy and/or hormone.

4/7/10          PSA= 0.4  Recurrence of the cancer is probable. Referred me to RO

5/4/10                   First RT.  RO is recommending 37 treatments x 1.8Gy=66.6 Gy

6/25/10       Final RT. ended up w/ 36 treatments, 64.8 Gy


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 7/1/2010 11:31 AM (GMT -6)   
Hi LuvMyDAD,



Sorry about your dad's health issue. Unfortunately, RT after failed RP is the only option we have to attempt a cure at this time. The success rate seems to be not great, but it is the last chance to rid the body of this daemon. If it should fail, all is not lost. There are quite a few guys that have managed the condition using hormone therapy successfully for many years. Only time will tell if your dad's SRT resulted in a 'cure'. The waiting for test results is enough to drive many of us around the bend; it's one of the 'benefits' of this dreadful disease. Don't give up hope and keep the fight going. Your dad is very fortunate to have such a caring family member as you to help him in his battle. Hopefully the SRT did the trick for your dad.

Wishing both of you all the best.



Magaboo
Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
Open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04

Post Edited (Magaboo) : 7/1/2010 3:13:50 PM (GMT-6)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/1/2010 11:32 AM (GMT -6)   
In spite of Zufus's cheery take on the conspiracy behind medicine, he is correct about the nature of PC. It can take off anywhere. Most profiles show perineural invasion, which is a highway to the rest of the body.

I have found that 20 to 30 % is a better number for SRT cure rates, but that included everyone who has SRT, whether you start with a PSA of 4, or 40, whether you had positive margins, or an EPE.

Some studies bump the success rate to 40 to 50 % if you commence withing 4 months, but again, those cells can land anywhere, and it takes a long time sometimes for them to start a colony big enough to start showing on PSA or scans.

In my own opinion, I believe that we have PC for the rest of our lives. Depending on our age at treatment, it may never appear again,
or, it may have already landed somewhere else and it is just a matter of time.

Certainly wish the best for your Dad.
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 injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 7/1/2010 11:56 AM (GMT -6)   
LMD

Sorry about the things you and your dad are worried about. RT will take a bit more time to show what it's done. And I know it's not easy being patient.

So much of what we hear about is based on statistics, and statistics never tell the whole story, or the real story.

Your chances of being in whatever group it might be ignore the fact that once you are actually in a group you are in it 100%.

As for what you can calculate on the basis of the experiences of the guys on the forum, frankly you can't make any calculations at all. All the data about us is sourced subjectively. To explain the flawed nature of the forum in a light-hearted manner consider this: I'm not sure how many names are on James' "Where-are-we-from" list, but I'm guessing it's about 200, well, as far as I know, I am the only guy in Holland who posts here, but you cannot use those two numbers to conclude that only one in two hundred men who who get prostate cancer live in Holland.

I'm just an optimistic Brit, but, my advice is to ignore all together the nomograms and stuff regarding the odds of this or that happening in the future and just deal with your own known stats as they are today, and bravely and patiently move from one PSA test to the next.
If you get to be in the zero club embrace it, don't fill you head with worrying about what the chances are that you might get kicked out of it.
And if you're not yet in the zero club, then worrying isn't going to get you membership either.

It's not just about not crossing bridges till you get to them, but it's also about not wandering around trying to work out where there might be a river that you might need to cross one day.

All the best
Alf
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/1/2010 1:23 PM (GMT -6)   
Hey Goodlife, actually enjoyed reading that and got a laugh out of the conspiracy theory, I can handle it. I think your thoughts of numbers of 20-30% for possible cure are atleast more realistic. Idea, maybe consult an oncologist only as to his opinion for you and your case for realistic SRT and hear him/her out...doesn't mean you have take their advice. Since this is a big decision medically, why not get a couple opinions...this is a bigger deal than buying your next car, that you shop around and compare stuff, for (LOL).
Youth is wasted on the Young-(W.C. Fields)


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/1/2010 2:07 PM (GMT -6)   
Dear, LuvMyDAD
 
I advocate for others in my community.  Just last week I gave a short presentation to about 30 such caregivers in one of our local hospitals.  That mostly female staff was one of the most lettered group of professionals I have ever harvested business cards from.  They go by lots of different names.  Patient Advocates, Care Management Staff or Case Worker seems to be used interchangably.
 
So that raises a question in my mind for you that you do not have to answer here.  Have you connected with several to find those 1 or 2 individuals with whom you can seek consul and advice with regrad to the many layers of treatment required by your Father?
 
It was explained to me they walk in that middle ground between the Doctors and the Patient and/or Family.  They try to keep detailed records that should be available to you at your request for free once.


Presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.
Initial Results are T2cNoMo andricarcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to appologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups since 12 weeks after surgery have been less then <.01> Or below the scale. I was checked for 2 yrs every 90 days. I will be checked the rest of the years of my life every 6 months.

Post Edited (maltratado45) : 7/1/2010 2:10:39 PM (GMT-6)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/1/2010 7:09 PM (GMT -6)   
Zufus,
 
I didn't say you were wrong, it's just an unsettling thought, that we can't trust our medical community because they are basically only in it for the money.  I guess it's not a real encouraging idea, or cheery as I said.
 
I think another reason behind a lot of what we hear from our doctors aside from the thought that they are just trying to pick our pockets, is that for the most part it is what we want to hear.  How many people really, really want to hear the unvarnished truth ?  We all want to hear a little optimism from our doctor.  It gives us a little optimism.  In most cases, he could say, well Mr. Goodlife, it doesn't look very good.  Based your biopsy, and the most relistic, or conservative stats I can find in the internet, you had better get your personal affairs in order.  Oh my sir, you had an EPE, and your Gleason is very aggressive.  Does not look good at all.  Well, I could do surgery, but that may cause total impotence ( unless you care to stick your Willie with a needle ), and most likely you will have wet pants the rest of your life.  Of course, diapers can make it better.
 
Or, we could subject you to radiation, which may burn your rectum, cause bladder neck scarring, and you may have to be on catheters for many months, maybe even have a urine bag the rest of your life.
 
Or, if those options don't sound too good, you could be chemically castrated, so you can grow breasts, not want to have any sex, and still most likely die from bone cancer or some other painful malady.
 
Or, he could say Mr. Goodlife, you have a chance of a complete cure.  Yes, there may be a few side effects, but we have ways to cope with all of them.  Of you look at this nomogram, you have a statistical 90 % chance of a 5 year non reoccurence.  Do you and Mrs. Goodlife have any question ?  Ok, lets' get started.
 
Really, which approach would give us the courage to have done what we have had done ?  I say the optimism, the chance that we have of a cure, or another 10 or 15 years of life, is what keeps us going.  Even if it is only 20 %, that is worth more to us than any anti-depressants, or other things that we may do to keep on going.  How many people will buy a Powerball ticket tomorrow with a 1 in 200,000,000 chance of hitting it rich.
 
I'll take optimism anyday, thank you.
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 injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 7/1/2010 7:43 PM (GMT -6)   
Luv,
You can't base success percentages by folks on forums. Most people on forums are the ones whose are looking for help or wanting to help others. I know over ten friends who have had surgery and or SRT who are doing well and none of them participate in any forum.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/1/2010 8:04 PM (GMT -6)   
I don't get into the medical conspiracy theories or concepts at all, I have a much higher opinion of our general medical care in our country then perhaps some folks think.  They are entitled to their opinion too, based on their own experiences.

My doctors have been honest and straight shooting with me from the start. When I had to resign myself to SRT, I was told, that due to my pre-surgery PSA velocity issues, and the fact the recurrance was confirmed barely 9 months after surgery, that SRT for me, at best, was about 20-30% like to be sucessful long term. After weighing it all out, despite my reservations about how badly I dealt with radiation before, I went for it. Why? Not because of any nanogram or stats or percentages, because I have a wife and family that love me, and because I am only 57, and aside from being a cancer magnet, I am in good health. I did not fully exptect to be in my current miserable position for so long, but unfortunately for me, the radiation did a lot more damage to me then even my doctors had predicted. My own gut feeling has been far more accurate, but again, without the SRT, I would have zero chance of outliving the cancer. So I gambled on the long shot, because we are still talking about my life.  Not afraid to die, we will all have to do that one day, just not ready to for the early check out line yet.
 
That's why I don't pay attention to all these endless graphs, studies, nanograms, etc, the only stats that count for me, are my own, and my body reacts in its own way to treatment. And my side effects are unique to me in many ways. I share them here, because I think its important for people to understand that things can go wrong, very wrong, and even a good doctor doesn't always know how a patient will react to a particular treatment.

Doesn't make him/her a bad doctor, its how that doctor is willing to work with his patient after the problems happen that seperate a good doctor from a poor doctor in my opinion.

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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17

Post Edited (Purgatory) : 7/1/2010 8:07:45 PM (GMT-6)


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 7/1/2010 9:03 PM (GMT -6)   
Luv,

My urologist/ later surgeon basically told me the "bad" line from goodlife's scenario. He wanted to be optimistic, but it did not ring true. Good thing, because it wasn't, and we had the come to reality discussion.

Yes, if we are still here on the forum, we either still have problems, or we want to try to help, or both.

If you don't have a bridge to cross, don't look for one, and in the desperation of not finding it, then don't build one just for the exercise.

I was told it could take a year to see the continued impact of RT. As well, at a certain age, the odds of being taken out by something else first change the risks. Based on family history, I should have been dead years ago, that likely the reason no PCa has shown up in my line.

Take it easy, wait for the next test, and then re-evaluate.

Hope and Prayer
Regular Member


Date Joined May 2010
Total Posts : 59
   Posted 7/1/2010 9:56 PM (GMT -6)   
Hi Lynne-
Im so sorry that you are having sleepless nights! Its understandable though. I dont know how to answer but to give you Peter's stats and see if you can compare. I know that their diagnoses differ. Peter is a T3b, N1, Mx, Gleson 9. I know your Dad and Peter did their treatments around the same time. Peter started with a PSA of 51. Surgery was 10 days after your Dad's on 12/31 and had a PSA of .37 6 weeks post surgery and one month of HT. His PSA went to a .02 after radation and HT of 5 months. You dont have to wait to run PSAs again. Just go into Sloan and have blood drawn. Peter "demands" every month. Really, he tells them he is coming in and they do it. LOL. He did it again on 6/28 after they just did it on 5/17. Maybe your Dad can do the same. Another thing that Peter is doing is working out 4 times a week and following Dr. Meyers' diet and supplement regime to a T. Every little bit helps. Let us know how your Dad is doing! I pray for wonderful results!
Boyfriend dx at age 44 with Stage 4 PC on 11/09. Gleason 4+5, 11 of 12 cores +; PSA 51.34
DaVinci surgery on 12/09

Gleason 4+5 confirmed. Lymph and vesicle invasion, right nerves spared.
pT3c N1 Mx
HT: Casedox and Lupron started 1/10

PSA 1/13/10 23.15 2/8/10 .37 3/18/10 <.05 5/14/10 <.02

Bone metastasis

Radiation: 42 sessions ending 6/10


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/2/2010 7:34 AM (GMT -6)   
Good Morning   LuvMyDAD

I decided to call a few of those Patient Advocates I presented too last week and see if I could harvest any new information useful to you.

Two of them invited me back down to the hospital for interviews and encouraged me to bring a recorder, after regular hours.

I've actually never done anything like that but here goes.  I am going to try to edit these conversations into a readable text here.

They have seen many different scenarios of Family/Mate (F/M) distress presented and the outcomes vary.  Without going into detail some of the most heart wrenching cases involve F/M faced with the very real possibility of have to spend down personal resources until they get under a low threshold of assets in-order to qualify for Medicaid or commit the legal act of Abandonment.

So for some of the F/M it becomes a question of "How do I survive this punishing system?"  That seems to be the situation you are in and this is what they had to say.

Both skilled and unskilled help will be required to supply both nursing and housekeeping for your Father.

Second, you must learn the "magic words."  All systems have a special language and medicine sure qualifies there.  Those words must be used and understood by all caregivers in the communication with doctors, nurses, social workers, insurance companies and others.  Each of those entities have words with special meanings to them.  One of your tasks must be to identify and prune to find the terms that work for both you and them in helping your Father.

They suggest you also need to become "well informed, fearless and willing to be a pain in the neck."

A List of Suggested Resources:

Find a licensed geriatric care manager by going to    http://www.caremanager.org/    That is the site for the National Association of Professional Geriatric Care Managers.  Find one in your area.  The fees for this person will not be covered by insurance, but can save you from making costly and emotionally trying mistakes.  For instance one little known benefit for a caregiver under Medicare, the caregiver is entitled to three or four days off every 90 days.  Your relative can go to a care facility for those days.

Speak to social workers in the hospital and ask about ways to get help for Dad.

Consult the Area Agency on Aging for your location and surrounding counties.

If appropriate seek help from the Alzheimer's Association at    http://www.alz.org/index.asp

Talk to and/or visit doctors, pharmacists, neighbors, church and social group friends and others particularly because you are trying to do this alone and that is not encouraged.

They have identified the inevitable 8 stages of care giving to the very ill F/M.

1.  Shock and mobilization.  Learning how to fight rather that flee.

2.  The new normal.  Finding ways to spend part of a day in pleasurable activities not related to the dependent one.

3.  The boomerang.  Responding to changing illness by expanding the circle of care to include others.

4.  Playing God.  Avoid be consumed by the "what ifs."

5.  I can't do it anymore.  Its normal to feel that way but learn to say a prayer similar to this, "Please God, grant me a mild heart attack now so the EMS will put me in a hospital bed next to Dad and I can get some rest."

6. Coming back.  Beginning to release the sick one and imagining your own comeback.

7.  The in-between.  Learning to supervise dying and making decisions about hospice.

8.  The long goodbye.  Helping the dying to find the peace to let go.

It is my sincere desire that something here is some help to you.

Best Wish's on your journey

 Jim

       


Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.  Initial Results are T2cNoMo carcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to apologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups to date, 5 1/2 yrs, are undetectable.

Post Edited (maltratado45) : 7/3/2010 4:12:20 AM (GMT-6)


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/2/2010 10:26 AM (GMT -6)   
This article is recommended by the founder of this site.  Good reading.
 

Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.  Initial Results are T2cNoMo carcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to apologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups to date, 5 1/2 yrs, are undetectable.


Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 7/2/2010 6:38 PM (GMT -6)   
Hi, LuvMy Dad,

Hope your dad is doing well. I'm a dad, as most of us are, and I'm in tune to how my kids feel about all of this mess. I don't post a lot anymore, but still check in regularly to see how this band of miscreants is doing. I got the result of my 6month post RT today and it came back at 0.1 again. Steady as she goes in my case.Didn't need to get tested until Sept. but want to stay on top of this. I asked the same question as you a year or so ago about where everyone has gone who used to post here. THe answers I got probably apply now as to then. Some were "cured" and didn't come back, or were here for the info and moved on and some, sadly, are no longer with us. But as the technology changes, the questions change, and unfortunately I've seen a steady influx of new people here looking for information and answers, which we are most happy to help with when we can. I hope I can consider myself "cured" someday. My sister-in-law says with my numbers, I should stay this way for the next 40 years. I can't imagine being 98 and still going, but maybe by then they can transplant my brain into an Adonis with time, and the energy, to spare.

Hope this helps.

Bob
 AGE:58
 Dx: October,27, 2008(the day after my birthday)
 Psa 14.5
 Gleason:(4+3) 7 T1c
 Bone scan:Negative
 Cat scan: Negative
 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.
 Confined to prostate.
 DaVinci Jan. 19th, 2009. No lymph node involvement, all margins clear.
 8 week PSa <0.01
 Gleason downgraded to (3+4)7
 6 month Psa , 0.1 
 9 month Psa,  0.2  Doubled! Criminy!
 Started RT 10/28...one year since diagnosis.  RT over 12/22.
 3 month post RT Psa 0.1.


LuvMyDAD
Regular Member


Date Joined Dec 2009
Total Posts : 315
   Posted 7/6/2010 8:38 AM (GMT -6)   

Thank you guys for all your help. Simply reading these posts made me feel so much better.

I guess all I can do at this point is wait. I am glad its the summer time, my parents are going back home to the Middle East to visit for about a month, so it is a nice break for them. My dad can forget about PC, radiation, and PSA--words that have unfortunately become household to us now.

I am glad to see alot of people benefit from radiation reply to my post. And for those who haven't- so many new drugs have been FDA approved recently that we have alot to be hopeful for. (I always like to feel that we have a back up for whatever fails...)

Hope- I am so glad to hear that Peter is doing better. It's great that his PSA is undetectable!!! You made me laugh when you said Peter just comes in and demands it, I can totally picture him doing that. loool. Sloan said they are going to draw a PSA for my dad in October, enough time to see if the radiation was effective or not. My dad is going to wait, he just needs a break. No point in unnecessary anxiety for now. He drew a PSA about 6 weeks ago and it came back at a .1, we all started to worry that with HT and radiation it still didn't get to zero. The doctor said that whatever the value is now doesn't mean anything, because the cells are being killed and could release some PSA. We really don't want to go through that again.
 
Goodlife- your post made me smile. LOL. You are so right. Even though I would prefer the truth straight up regardless of what it is; it is still definitely better to emphasize the benefits of radiation then the side effects of it. You have a point there. ( I do believe however a major incentive behind physicians referring people to SRT is $$. I read an article last week on MSNBC Health, that over 80% of CT scans that are being done are unnecessary and provide 100 times the dose of radiation of X-rays. 15K people every year will die of cancers caused by CT scans). Sorry for the depressing side note.....
 
Again, thank you guys for giving me your feedback and for your kind wishes for my father. You are all in my thoughts and prayers as well.
 
Lynne
Father diagnosed Nov. 9, 2009
Open radical prostatectomy Dec. 21, 2009, post op pathology report T3a, Gleason 7
5 week post op psa .55
Combination therapy, hormone and IMRT. 40 sessions 72gy.
Hoping and praying for a cured dad.


Hope and Prayer
Regular Member


Date Joined May 2010
Total Posts : 59
   Posted 7/6/2010 9:39 PM (GMT -6)   
I may be wrong but i think a .1 is great!!!! I remember it took a while for my Dad to get a zero after he had seed implants 10 years ago. dont be discouraged if you dont get a zero. I hope your parents have a great trip. Much deserved. And it is good that he is removed from the daily worries. I hope you enjoy your summer as well!
Boyfriend dx at age 44 with Stage 4 PC on 11/09. Gleason 4+5, 11 of 12 cores +; PSA 51.34
DaVinci surgery on 12/09

Gleason 4+5 confirmed. Lymph and vesicle invasion, right nerves spared.
pT3c N1 Mx
HT: Casedox and Lupron started 1/10

PSA 1/13/10 23.15 2/8/10 .37 3/18/10 <.05 5/14/10 <.02

Bone metastasis

Radiation: 42 sessions ending 6/10


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/7/2010 7:07 AM (GMT -6)   
Lynne,

If I could just get on my soap box one more time on CT's and bone scans. Doctors per se., don't make the money on the CT and bine scans. These are usually done at the hospitals, and billed by them.

If the doctor didn't order a CT and bone scan, and it turned out the patient had mets, then the next call would be to a lawyer. It really is about liability for most of them.

I have never had a wheeel fall off my car because of loose lugnuts, nor do i know of very many people who have. It doesn't mean tho, that my mechanic shouldn't check them. Yes, it is a waste of money because 99 out opf a 100 times they are fine, but for the one wheel he finds, that person is grateful.

Hoping your dad can have a real vacation form PC this summer.
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 injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 25, 2018 11:30 AM (GMT -6)
There are a total of 2,975,059 posts in 326,238 threads.
View Active Threads


Who's Online
This forum has 161322 registered members. Please welcome our newest member, exlibris.
413 Guest(s), 15 Registered Member(s) are currently online.  Details
Balladeer, MissBliss, Stan1961, C_G_K, Bull101, FlowersGal, sierraDon, Ticsic, ChickenArise, OriolCarol, Busted1, 1039smooth, Tall Allen, joee, iPoop