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THE IMPORTANCE OF BEING YOUR OWN ADVOCATE - PLEASE READ!

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THE IMPORTANCE OF BEING YOUR OWN ADVOCATE - PLEASE READ!  
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Posted 7/30/2007 7:29 AM (GMT -7)
Everyone,

PLEASE take the time to read this excellent article from yesterdays' NY Times - we must do our research, find the best doctors and fight with insurance companies if need be. You'll see here the statistics support what many of us already know - you MUST be your own advocate!!! Yes, it's ALL about taking charge of your treatment path with this terrible disease.

Cancer Patients, Lost in a Maze of Uneven Care

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http://www.nytimes.com/2007/07/29/health/29Cancer.html?ex=1343448000&en=159cc85f3e7d8802&ei=5124&partner=permalink&exprod=permalink


Let's fight the good fight, team!

My best to each and every one who enter here,
Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 Distant lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1

Post Edited (myman) : 7/30/2007 5:57:51 PM (GMT-6)

Posted 7/30/2007 7:56 AM (GMT -7)
Thank you for posting.

A.
Posted 7/30/2007 8:31 PM (GMT -7)
Hi Susan,
I read this and can't agree more on not only being your own decision maker, but also, giving yourself the best opportunities by not making snap decisions based on doctors evaluations. By now with my experience with this disease I fully understand the concept that noone is better able to make sure the right treatments are available to me and being done correctly but myself. This is a great post for our new posters as well as our veterans here at this site.

Important for all here:

You must educate yourself. If you are told you have cancer at any stage, you need to understand the stage, agressiveness, how it can be better or worse after treatment BEFORE you decide on a treatment. I believe a cancer educated person will fare better by taking the mystery out of cancer and treatment options. And if you still can't make the decisions easier, then perhaps look deep into the experience of the individuals examining you. I also believe anytime a person has been told that they have cancer, if you are not in a major cancer center, you need to be at least once before you decide on treatment. Major centers are a hot bed of experience. Neighborhood urologists and oncologists do not carry the same case load as a major center. And cost should not be a factor in getting a second opinion. This is your life.

That's my two cents worth, don't worry about making change. :-)
Tony
Posted 7/30/2007 10:19 PM (GMT -7)
Hey Susan,

Great article!

Without this forum, I would not have had a clue of how to be my own advocate. I would have believed everything my uro told me been a zombie by now from low testosterone. Some doctors are great at treating disease but not worth a hoot at treating the patient. I am constantly impressed by the amount of research some of our members do and by their knowledge of PCa. I don't have the patience to do that. However, their encouragement to get second and third opinions on any phase of this problem is what led me to the solution to my post-op problems.

The word is "if it doesn't sound right or feel right or seem to fit your situation, go ask somebody else." I have the utmost respect for doctors but they are no longer gods....

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
Next PSA on 10/17/07
 

Posted 7/30/2007 11:33 PM (GMT -7)
Amen.
____________________

Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: pre-surgery 3+3=6; post-surgery 3+4=7
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6-12 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006); 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007); 4th post-surgery PSA: 0 (June 2007)

The search for timber: took Viagra/Cialis approx. every other day, ErecAid once a day, injections. Peyronie's diagnosed 7/5/07. Now on Cialis, L-arginine and pentoxyfylline, ordered to be celibate for 6 weeks.

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .200 (2 for 6)
- Trimix batting average: .500 (1 for 2)

"Lost in the valley without my horses, no one can tell me what my remorse is..."

Posted 7/31/2007 3:47 AM (GMT -7)
Friends,

Susan, the article was excellent.  It was a bit of a surprise to read the finding that so many prostrate cancer patients are being "overtreated" with surgery and radiation and not considering watchful waiting.  Perhaps this interpretation of the data was over-simplified.
For example, my diagnosis indicated watchful waiting was an option for another year or so. 
However, my post operative biopsy indicated it would have been a VERY risky gamble.

The decision tree should not be weighted toward the path of least resistance but rather toward "informed choice" and the personal circumstances (e.g., co-morbidities, available resources, available support network of family and friends, etc.) of each individual patient.

Jim and Tony focused on the most important aspect of the article:
  Even if your diagnosis and choice is obvious,
   get a second opinion from the most qualified physician you can. 
  Otherwise, you will never know what you never knew....

Sincerely,

CCedar
ICTHUS!
2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined.  :)
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?

Posted 7/31/2007 8:00 PM (GMT -7)

Dear Susan

I just happened to read that great article before seeing your posting here beause I automatically get all articles on PCa in the New York Times sent to me via e-mail.  The article highlights what many of us alread know--we have to find the best doctors to help us battle prostate cancer and hopefully be cured, depending on our stage of cancer.  We also have to fight those insurers who would deny us certain treatments and/or the best doctors to treat us.  Continued good luck to Don in his fight against this nasty disease, especially when it gets to a more advanced stage.

Dave

P.S. Tony--excellent advice in your posting above!  I feel both humble and so fortunate that I was able to access some of the best doctors in major cancer centers for my treatment.  There is no question that you have to do you own homework in pursuing the best prostate cancer doctors.

 


68, 29-core biopsy 9/27/06, PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area],  Gleason 6 [less than 5% in two other areas], negative DRE, bone scan and Endorectal MRI. Completed 39 Proton radiation treatments 2/22/07-4/18/07.  First PSA test 7/19/07 (3 months after treatment) was 2.1 or a 70% reduction in my PSA before treatment (this was better than the average expectation of a 50% reduction in PSA at this juncture, according to my radiation oncologist).
 

Post Edited (pcdave) : 7/31/2007 9:11:53 PM (GMT-6)

Posted 7/31/2007 9:21 PM (GMT -7)
Having to decide myself on my treatment was unerving at best.  However, Virginia Mason in Seattle does a great job with setting you up with specialists in different fields to give you their opinions on what to do.  This forum also gives you other ideas.  I've been pleased with my care, even though other things like "proton therapy" wasn't available up here.  I've always had the mindset to attack this cancer aggresively and that's what I'm continuing to do.  I admit, having a poor pathology report hit me like a ton of bricks, but I'm looking to complete irradication following my radiation treatments starting the end of August.  One month of hormones so far with no side effects.
PSA 4.7 (up from 3.2 one year ago)
Biopsy November 8, 2006 1 of 10 cores positive 5% LEFT Side Gleason 3+3
Robotic surgery January 19, 2007
Post Surgery Pathology
     Stage T3a, Gleason 3+4, positive margins and
     capsular penetration RIGHT Side
Post Surgery PSA:  March 5:  0.01
5 month PSA, June 13, 2007:  0.08
Adjuvant therapy began June 26 with Zoladex injection
     Radiation to commence in late August
 

Posted 8/1/2007 10:07 AM (GMT -7)
Hawk,
I have two more treatments left on IMRT and will be completing my 38th and final on Friday...:-). I feel great and attribute it to walking after every treatment. I am approaching three months on Lupron. Occasional light hot flashes but I live in Vegas. Everyday this time of year is a hot flash. Good luck on your treatments. I believe IMRT is equal to Proton when you consider the stage we have. WPRT (Whole Pelvic Radiation Therapy) is also best for our stage according to studies from Stanford and my RO agreed. The recurrance rate is reduced quite a bit when the pelvic lymph nodes are treated as well. My RO did his residency at Loma Linda and is an advocate of both IMRT and Proton. My testamonial is that I feel great after 36 IMRT treatments. So far, no climb in PSA. I did experience a little diahrea but only for a day or so. I took Imodium AD and that went away. I assume you will be doing 38 treatments?

Tony
Posted 8/3/2007 12:06 PM (GMT -7)
Bump up!
Posted 8/3/2007 7:35 PM (GMT -7)
I'll be having 32 treatments set to start the end of this month.  One thing that was weird, was that they gave me three miniture tatoos during my CT scan.  These will be used to position me for the treatments.  My wife freaked out when I came from my appointment, and told her I went out and got tatooed.  She calmed down when I told them what they were for and how very small they are.  Have to keep things light.....
PSA 4.7 (up from 3.2 one year ago)
Biopsy November 8, 2006 1 of 10 cores positive 5% LEFT Side Gleason 3+3
Robotic surgery January 19, 2007
Post Surgery Pathology
     Stage T3a, Gleason 3+4, positive margins and
     capsular penetration RIGHT Side
Post Surgery PSA:  March 5:  0.01
5 month PSA, June 13, 2007:  0.08
Adjuvant therapy began June 26 with Zoladex injection
     Radiation to commence in late August
 

Posted 8/4/2007 3:07 AM (GMT -7)
When I began posting here, I was about to have biopsies done on the prostate and also in my mouth.  The results of the oral biopsy was that it was not cancer.  This was good news, and with the exception of a new prescription, that was that.  The original problem with the mouth is much better, to a point, but recently has been getting a little worse or at least not going away.  I should known better, but I finally realized that I had never researched this new medicine so I did and found that it is used to treat erosive OLP.  What the heck is that?  Well now I know, and it may as well be called cancer.  Not only is the medicine prescribed for this problem, but the symptoms describe me exactly.  Although my job deals with medical problems I have zero formal medical training, but I believe that my dentist and the oral surgeon, not to mention my gp, should have all been able to take one look at me and know exactly what was going on.  I wasn't supposed to see the oral surgeon again until January, but I will be seeing him again next week.  Now that I know for sure that I have prostate cancer I would never minimize it's seriousness, but I will say that erosive OLP may potentially have more serious effects on me than PC.  My wife has learned that the brother of a coworker died from this.  I went through this story to point out that you are in charge of your body and, like the person in charge of a business, you better know what's going on.  You are reading this and that means that you have access to a computer.  Use it to research medicines, symptoms, any medical terms that you don't understand and question, question, question.  Most of you probably know what a round tuit is.  I have one in my desk drawer and it isn't doing me a bit of good.  Please don't wait until you get a round tuit.  Do it now!
Posted 8/4/2007 10:38 PM (GMT -7)
Hi guys - So glad to see your posts here...when others see your names I know they're likely to check out what you have to say...I always do!

For those who are in the newly diagnosed stage of this disease - we strongly encourage you to NOT accept the first answer you get from ANYONE. You do have choices.

As you can see by the responses here, once the shock subsides, ask questions, do your homework, make your decisions and then...don't second guess yourself.

Any questions can be asked here - no we don't have all the answers but we know where to go to find some!


Susan
Posted 8/5/2007 7:36 AM (GMT -7)
Thanks, Susan! This article reiterates that we have to become investigative reporters to dig out the best resources and then review all the options. This is one point that has been made before - it's not always the best known and largest facilities that can provide the care that's right for you. I know that last year, some of the more well-known names in our state were still a little "slow" to recommend robotics. Some were even difficult to contact; i.e., calling and being referred to a web site to make an appointment. Once we made our decision, we kept looking until we found an absolutely exceptional doctor, team and hospital.
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/06, 4/07 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now - Next one: 10/16/07
 

Posted 8/6/2007 6:57 PM (GMT -7)

smurf  Bump to the top!!

Hey ~ Susan,

I'm in the process of updating Helpful Hints and Direct Links and will be placing
this link into both areas!!
 
Thank you for your continued "research" which is helping "all of us"....
Special Hugs.... to you!  And one for Don too!!! tongue
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