The Change Cycle

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John T
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Date Joined Nov 2008
Total Posts : 4269
   Posted 1/21/2010 6:08 PM (GMT -6)   
In the thread on AS, Casey brought up a good point of doctors needing to communicate the psychological challanges of PC. Most patients have this need and most doctor's don't address it adequately.
Research has shown that the brain reacts in the same way to change; sometimes it occurrs within a second for minor changes and sometimes it takes months to processs a major change; but it always goes through these stages;
Reptilian response: Fear, paralyzed, unable to process any information,
Mammalian: Can comprehend basic facts, but unable to integrate information into a plan
Complex: Process and integrate information and understand the entire picture.
The greater the amount of change and the less experience an individual has dealing with change will determine the time it takes to complete the cycle.
 
Doctors should relalize that a DX of PC, especially if it is unexpected, will be a shock and the patient will hear nothing after "you have cancer", and certaintly won't be able to process the information usually given on treatment options ect.
This is why the best advice to new patients on this forum is to take your time, gather all information and wait before making a decision, as any decision made before the brain has time to move to the complex stage will usually be a poor decision based on fear and not on a well thought out plan that considers all options and consequences.
JT
 
 

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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/21/2010 6:16 PM (GMT -6)   
Excellent subject, great advice already. Over the years, I have acted on my own as a patient advocate, not just with PC, but with other cancers, for the very reason you mention. The big 'C" word terrifies even the strongest of the strong. There are doctors that are in tune to that side of their patients, and there are doctor's that are clueless. I have been fighting this subject for many years, that the psychological side is just as important as the "fixing it" side. If you take the fear factor out of cancer, and replace it with knowledge, and a good dose of empathy from caregivers and family, its much easier to face. Will be personally interested in seeing how this particular thread develops.

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: 1/10 .12
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 1/21/2010 7:17 PM (GMT -6)   
Could not agree more. I am thinking back to my urologist delivering the news to me: "you have cancer, it is aggressive and there is a lot of it". He then went on for another 15 min talking about treatments, probabilities, survival - I did not hear any of this. I was out of town at Duke and just wanted to come home to die. Thankfully, my wife talked me out of it. She came over and we went to see a Duke oncologist. This guy had a very different bed side manner. He understood the psychology of a patient.

This is why I ditched the first and kept the second doc.
Father died from poorly differentiated PCa @ 78 - normal PSA and DRE
5 biopsies over 4 years negative while PSA going from 3.8 to 28
Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8
Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere + Avastin)
PSA prior to treatment 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60
RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins
PSA undetectable for 8 months, then 2/6/2009 0.10, 4/26/2009 0.17, 5/22/2009 0.20, 6/11/2009 0.27
ADT (ongoing, duration TBD): Lupron started 6/22/2009
Salvage IMRT to prostate bed and pelvis - 72gy over 40 treatments finished 10/21/2009
PSA 6/25/2009 0.1, T=516, 7/23/2009 <0.05, T<10, 10/21/2009 <0.05, T<10

Post Edited (Geebra) : 1/21/2010 5:20:25 PM (GMT-7)


Jim B
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 1/21/2010 8:11 PM (GMT -6)   
Excellent post and I so agree that some of the doctors really don't seem to understand. Having said that, my two primary docs have completely opposite bedside manners and I actually really appreciate it. My rad onc (who I call Douggie Houser because he seems so young) really cares and takes the time to make sure I understand completly. My urologist, on the other hand, is very matter of fact. When my PSA started rising again after radiation treatment I asked him "does this mean the cancer is back." His response a very nonchallant "of yeah." I asked what that meant and his reply was, well, when it gets to the bones you probably have a couple of years. Harsh statements but I like the different approaches. I appreciate how my rad onc says things and I love to prove my urologist wrong.

Jim B
Dx age 48 PSA 11.58
Biopsy Nov 04
4 of 6 specimens positive
gleason 4+5=9
Perineural invasion at two locations
40 radiation treatments Jan-Mar 05
PSA May 05 0.07
Aug 05 - 0.15; Feb 06- 0.92; Oct 06- 0.55; Sep 07-0.42; Mar 08-1.13 Aug 08-2.26
Nov 08-3.98; Jan 09-5.81; Apr 09-9.97; (start HT again) May 09 1.84; Aug 09 0.37; Oct 09 0.32; Dec 09 0.37
Bone scan in Nov 08- one spot in pelvic region 1.9cm with SUV of 11
Bone scan in Mar 09-two spots. Original now 2.5cm with SUV of 22 and 2nd spot less than 1cm with SUV of 7.8
Bone scan in Nov 09 - NO CHANGE WOO HOO!


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/22/2010 12:49 AM (GMT -6)   

John T, I suspect this thread has drifted a little bit from the direction you initially intended (maybe, maybe not, I don't know).  The responses have been mostly about bedside/office manner and helping (or not) patients deal with their introduction to "the big C." 

In another recent thread ("When is a PCa anniversary", http://www.healingwell.com/community/default.aspx?f=35&m=1695580), I wrote about the 90 minute meeting with my urologist which started with "You have cancer."  After that, he pulled out a blank sheet of paper and said, "I'm going to take notes for you."  As he talked through the diangosis, next steps, and an introduction to treatment options, he wrote everything down.  At the end of the meeting, he handed me the paper and told me to bring it back to our next meeting.  At the next meeting (an hour meeting, also attended by my wife), he started with a review of what he wrote.

I guess this story fits in loosely with the direction this thread is going.  Looking back, I think that was a "best practice" and helped me tremendously to retain the information that he spent 90 minutes trying to tell me (while all I could hear was the ringing in my ears).  I referenced those notes many times afterwards.


MaxBuck
Regular Member


Date Joined Jan 2010
Total Posts : 75
   Posted 1/22/2010 9:00 AM (GMT -6)   
Geebra said...
Could not agree more. I am thinking back to my urologist delivering the news to me: "you have cancer, it is aggressive and there is a lot of it".
Stories like this illustrate quite clearly why it's such a good thing that I did not go into medicine. That sounds exactly like the kind of thing I'd say. cool

Glad you were able to find a more empathetic doc who is better able to treat "the whole patient." That orientation is becoming increasingly important in the education of young doctors in our nation's medical schools - a darn good thing, because body, mind and soul all need care at times when patients are advised of bad health news like a Dx of PCa.

Best wishes!
Dx at age 56: Oct 09; PSA 5.8, followed up by 9.9 two weeks later (reproducibility of test - ?)
Biopsy ind cancer in 8/12 cores: Gleason 8 (4+4)
open radical retropubic prostatectomy Dec 4 09
Post-op pathology: 56 g weight, cancer in 21%, Gleason 7 (4+3, tert 5); margins clear, lymph node involvement 0/9, perineural invasion present, T2c N0Mx (but showed clear from distant metastasis in pre-op bone scan and CT scan)
Continence data: 1 "panty liner"/day, with minor leakage when I get up from long seated position; ED pretty complete: some erection possible but current non-functional


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 1/22/2010 12:12 PM (GMT -6)   
Not sure I can agree on the brain reacting to change in the same way, or the same steps, but then I am not a shrink either.

It would appear in doing unscientific obervation on this site, that most of us have reacted to change differently. Some are terrified, some are mildy concerned, some are pretty nonchalant about it. I realize that even the word "change" is a broad concept. Some of this would seem to revolve around what each of really considers as change.

In my own situation, I guess maybe I don't feel as tho much has changed , other than attaching PC to my bio. Once the incontinence is gone, yeah, sex is a little different, but at 59, it's a little different anyway. I work every day, socialize with the same friends, pursue the same interests, etc. I have done my best not to let this disease change me. Maybe I'm only fooling myself.

Our personal lives, our religous beliefs, our emotional make-up, all seem to effect how we perceive or deal with change.

Just my 2 cents worth !

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


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 1/22/2010 1:09 PM (GMT -6)   
This post is really about how the human mind processes information after a DX of Cancer or any other major change such as getting fired suddenly. It simply can't process information in a rational way and doctor's need to realize this. Casey's doctor did it right. It is always a very good idea to have a close friend or partner in the room as he or she will hear things that you don't.
Anyone making a decision within a few weeks of being Dxed is most likely not thinking quite as clearly as he would be after he has come to grips with his DX and is able to process and integrate the information presented to him.
I know one individual that after 2 years of his DX still refuse to accept it and won't even talk to his wife about it. Another friend was DXed a few months ago and still won't talk about it. Everytime I bring the subject up he changes the subject. They have yet to move from the reptilian response of fear and confusion and you can't make a rational decision while in this stage.
JT

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


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 1/22/2010 1:26 PM (GMT -6)   
I can buy that !
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/22/2010 2:14 PM (GMT -6)   
Well John, some people are just denialists by nature, and they have a difficult time accepting both good and bad news, and with something as major as a cancer dx, can get out on the deep end real fast, even to the point of being delusional and irrational about their situation. Not a good thing.

Then you have the group that over reacts to a situation, good or bad. They will act rash and will make instantaneous decisions about very important things, often without understanding their situation and all the facts involved, or even having time to gain the knowledge to make the right choice. Their brains say, act now, solve the problem, settle things, etc.

Then you have the rational thinkers, that don't over react or deny, they take things in stride, willing to learn and listen, tries to involves other people's input, data, etc, and think things through.

Of course, there are more than these 3 mind sets, but it does cover a lot of people.

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: 1/10 .12
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


soulmate 101
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 1/22/2010 8:27 PM (GMT -6)   
This is a great thread. As geezer99 pointed out on another thread, my husband went from diagnosis to surgery in exactly four weeks. In fact, our urologist said he would have scheduled him earlier had it not been for the holidays.
For the first two weeks, I was in sheer mourning over the diagnosis. I had already nursed a child through cancer and silly me did not think life would send something like this to me again so close to home. Like I said, silly me. Hubby, on the other hand, after about the first day of shock and some mutual emotionality, fell into stride with the "plan." I wanted to smack him at times, worrying that he was not processing this. In fact less than a week before surgery, when he locked himself in the bathroom for four hours straight and wouldn't come out, I was somewhat relieved. It's like he had to have his "dark night of the soul," to process it, take in the gravity of it. That "crisis" precipitated our communication about the upcoming surgery, what it could and would mean , the potential and expected side effects and all the details that had been glossed over. Without having that "breakthrough" I was at my wits end and truly fearful that hubby was not psychologically prepared for surgery.

Sorry for rambling here. I just think this thread hits an important point. Surgery is not just the mechanics of anatomy and disease. It truly has a deep psychological impact. Personally I think that upon diagnosis, the urologist should make a mandatory referral to a social worker or other professional experienced in this disease for the purpose of helping the patient to prepare for surgery. I wonder how many men or spouses deal with depression after surgery when dealing with side effects or recurrences. And I would think that preparation could only help.
Husband, age 57, diagnosed in December 09, Gleason 4+3 = 7 stage T2c, laparoscopic nerve sparing Da Vinci robotic radical prostatectomy 1/13/10, clear surgical margins no lymph node or seminal vesicle involvement.
Let the healing begin...


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 1/22/2010 9:46 PM (GMT -6)   
I have often said that with every cancer diagnosis, a good doctor will hand the patient the card of a good therapist. Getting through these changes affects everyone differently. Clinical depression caused by stress and a change in brain chemistry affects a majority of PCa guys. All too often, it goes undiagnosed and untreated. Some guys sail right through all this - others have a hard time. It's all OK.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 1/22/2010 9:58 PM (GMT -6)   
Soulmate,

I agree that your husband needed/needs some further assistance. Hopefully you have found someone to help.

But as I said in an earlier post, we all react differently to PC. Some are able to treat it like a wisdom tooth extraction, some react much like your husband.

What is even harder is helping guys cope with no change. Like sitting on a time bomb that we have no idea when it might go off. Could be 6 months 1 year, 5 years. That is a challenge.

Best of luck to you and your husband. I personally have found my own faith hs been a tremendous help in dealing with these issues.

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


soulmate 101
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 1/22/2010 10:28 PM (GMT -6)   
Other than the "blip" or "breakthrough" I mentioned, hubby's spirits have been steady, overall optimistic and very appreciative of the care he has received along the way.
My general point is that I agree with the main premise of this thread in the way people process change and may deal with digesting this diagnosis.
Husband, age 57, diagnosed in December 09, Gleason 4+3 = 7 stage T2c, laparoscopic nerve sparing Da Vinci robotic radical prostatectomy 1/13/10, clear surgical margins no lymph node or seminal vesicle involvement.
Let the healing begin...

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