[Hopespringpcsg] FW: Free Book: PROSTATE CANCER Asking the Right Questions

Fri Jan 31 20:43:44 EST 2014

Hi all:

Opportunity to get an e-book free until Sat 1 Feb 14.

See below.

Thx.

Glen

Interesting...this man seems to have put a lot of thought into this work

----- Forwarded Message -----
From: Thomas Leih <TLEIH at austin.rr.com>
To: tleih at austin.rr.com 
Sent: Wednesday, January 29, 2014 4:50 PM
Subject: Free Book: PROSTATE CANCER Asking the Right Questions

Support Group Leaders,

My name is Tom Leih, and I am a member of the Us TOO prostate cancer support group in Georgetown , Texas , USA . After my prostate cancer treatment six years ago, I wrote a little ebook about my personal experience and what I had learned.  The title of the book is, PROSTATE CANCER Asking the Right Questions. I wrote it because I felt there was a need for a very practical book written from the patient’s perspective.  Since then, a lot has happened in prostate cancer diagnosis and treatment, and therefore I have published a third edition.  Things like 3T MRIs, Focal Therapy, new prognostic tests, and to some extent penile rehabilitation, haven’t been available at the community level.  In addition to addressing these topics and more, I have included “The Prostate Cancer Check List.”  You see, the book is all about helping men with prostate cancer ask the right questions.  I believe that asking the right questions is the only way a man can increase his chance of having a good outcome.  The “check list” helps a man ask the right questions by “walking him through” the prostate cancer process.  I am including the “check list” at the bottom of this email for perusal by you and your members.  

The book can be obtained FREE OF CHARGE from Thursday, January 30 through February 1.  Visit the website www.prostatecancerquestionstoask.com <http://www.prostatecancerquestionstoask.com/>  to learn more about what is in the book and how you and your members can be reading it on your PC, Mac, tablet, smart phone or Kindle reader in less than two minutes.  (You do NOT need a Kindle reader to obtain this book.)  By investing less than two minutes, a man can save himself or a friend a lot of grief.  

Thank you for forwarding this email to your members - together we’re stronger!

Tom

Chapter 20: The Prostate Cancer Check List from PROSTATE CANCER Asking the Right Questions by Thomas J. Leih.

Self-Advocacy

1.  Review the Process Flow Chart in Appendix A. 

2.  Are you being your own advocate? You and you alone will live with the consequences of your treatment or decision not to treat. (Chapter 1) 

PSA

3.  Do you want PSA testing? Think long and hard before you say “No.” (Chapter 2)

4.  Don’t do anything that might raise your PSA before your blood test. (Chapter 4)

5.  Request the following measurements: PSA, PSA Velocity, Free PSA, and PSA Density. Understand the significance of each measurement. (Chapter 4)

6.  Review with your doctor the possibility of employing one or more of the (four) additional supporting tests named in Chapter 4. Do everything you can do to understand the significance of your PSA number before proceeding to biopsy. This includes imaging (see MRI below).

7.  Do you want to test yourself? (Chapter 5)

MRI

8.  Request a 3T MRI if your PSA is elevated. Review the articles in References 18 and 19, and educate yourself on MRI and MRSI. (Chapter 6)

9.  Make sure the imaging center has: State-of-the-art, three-Tesla hardware; technicians who are precisely trained in how to perform prostate imaging; and physicians carefully trained specifically in the interpretation of prostate imaging. (Chapter 6) Remember, 3T MRI is a game changer only when done correctly.

10.  If possible, go to a center of excellence for your imaging needs. (Chapter 6)

11.  Decide if you want an endorectoal coil. (Chapter 6 and Reference 20)

BIOPSY

12.  Request a 3T MRI before having a biopsy. (Chapter 6)

13.  Request a “Fused 3D Ultrasound-3T MRI Guided Biopsy.” If at all possible, reject the outdated random “carpet bombing” approach. (Chapter 7)

14.  Ask that the ploidy of your tumor be determined during your biopsy. (Chapter 7) This may be standard procedure- just make sure.

15.  Before your biopsy, discuss with your doctor the possibility of using one or more of the following prognostic tests: Oncotype DX, Prolaris, ProstaVysion, and DNA ploidy. (Chapter 7)

16.  Before your biopsy, discuss the potential use of some of the prognostic markers presented in Reference 47: Proliferating Cell Nuclear Antigen (PCNA), Ki-67 and MIB-1 antibodies, Microvessel Density (MVD), Bcl-2 protien, P53 Protien, and p27Kip1 protein expression. 

17.  Ask to have your biopsy sent to a prostate cancer center of excellence for a second opinion. Remember, Gleason grading is subjective and sometimes pathologists get it wrong. (Chapter 7)

NEGATIVE BIOPSY

18.  If your biopsy doesn’t find cancer, don’t let someone turn you loose for a year (remember what happened to my friend). Be aggressive in your follow-up monitoring. (Chapter 19, Opinion 3)

19.  Ask if PIN was found in your biopsy. If so what does it suggest? (Chapter 7 and Chapter 16 (1a))

POSITIVE BIOPSY

20.  You now know that you have prostate cancer, and you are faced with three potential options: Active Surveillance, Focal Therapy, or more aggressive treatments. Do your best to understand how aggressive your cancer is or may become before making a decision.

21.  Understand how your Gleason score is calculated and its significance regarding your prognosis. Remember, you want to know the two grades that were used to get your score. (Chapter 7) 

22.  What does the ploidy of your tumor suggest with respect to risk? (Chapter 7)

23.  Review with your doctor the implications of any additional prognostic tests or markers that were calculated. (Chapter 7 and Reference 47)

24.  Ask about the significance of the location and volume of your tumor. How may this influence your choice of treatment? (Chapter 7)

25.  Discuss your TNM staging with your doctor. (Chapter 7)

PRIORITIES

26.  Rank impotence, incontinence, and cancer in their order of importance to you. (Chapter 8) Also consider the importance of bowel function impairment and painful or restricted urination. (Chapter 11, second CAVEAT)

SALVAGE STRATEGY

27.  Review Chapter 16. Develop a salvage strategy with your doctor before selecting a treatment, but remember you must sort out your doctor’s personal biases in the process. (Chapter 16, second CAVEAT)

ACTIVE SURVEILLANCE

28.  Request that your doctor incorporate 3T MRI imaging in your active surveillance regimen. 

29.  Discuss with your doctor the results of any prognostic tests, the prognostic markers listed in Chapter 16 (1a) and Reference 47, and the potential applicability of Focal Therapy, before selecting Active Surveillance. 

FOCAL THERAPY

30.  Are you a candidate for minimally invasive Focal Therapy? (Chapter 10) Consider this very carefully. For men who qualify, Focal Therapy is an option that falls between Active Surveillance and more aggressive, higher risk treatments.

31.  Don’t be afraid to get a second opinion. Many doctors are not experienced in these new methods. (Chapter 10)

32  Review the different forms of Focal Therapy presented in Chapter 11 and Reference 36. 

33.  Be careful in selecting a practitioner. Focal Therapy is relatively new, and it may be difficult or impossible to find a practitioner with a significant patient outcome data base. (See 37 and 38 below.) You may have to rely solely on the practitioner’s reputation.

34.  Be aggressive in post treatment monitoring. Long term efficacy of the various treatments is probably unknown. 

35. Visit the Us TOO Inspire Community website and start a discussion on “Experience with Focal Therapy.” Ask men to describe their personal experience with this new therapy. (Reference 45)

AGGRESSIVE TREATMENT

36.  Expand your knowledge of the major treatment options presented in Chapter 11. Review all of the treatment options identified in Reference 36.

37.  Does the practitioner you are interviewing keep accurate records of his or her patient outcomes in a database or spreadsheet that can be used to calculate performance statistics? If not, consider finding one that does. (Chapter 11)

38.  Does the practitioner you are interviewing have adequate experience? Is his or her data base large enough to render significant statistics? Be reluctant to go to a practitioner who has done only a few hundred procedures. (Chapter 11)

39.  Does the practitioner perform the procedure multiple times a week? Volume and frequency are very important. (Chapter 11)

40.  Statistically quantify the performance of the practitioner you are interviewing by asking the questions presented in Chapter 11. (Modify the questions as you see fit.) Remember, you are interested in the practitioner’s performance numbers as calculated from his or her own database, not national averages.

41.  Review your priorities (Chapter 8) and make a treatment decision based on the statistics (i.e., probabilities) you have gathered (Chapter 11) and expert advice. If you are familiar with Multiple Attribute Utility Theory (MAUT) or Multiple Criteria Decision Making (MCDM), then you may want to build a simple mathematical model to aid you in reaching a decision.

42.  Currently, HIFU is not an approved treatment in the United States , but there are qualified US physicians who offer the treatment in foreign countries. But remember, you will have to personally pay for it.

43  If you want radiation therapy, make sure that you understand the many different forms of treatment that are offered. (Chapter 11 and Reference 36) Some forms of treatment claim to compensate for movement in body and gland positions during the procedure. Be sure to ask about both short and long term risks, including the introduction of secondary cancers. 

44  If you choose Proton Beam Therapy (Chapter 11) make sure that your insurance will pay for the procedure - some won’t.

45.  Review the eighteen helpful hints in Chapter 12 if you choose surgery. These simple hints have been gleaned from patient’s experience and are not usually conveyed by your doctor.

46.  Older is not necessarily better when selecting a surgeon. (Chapter 19, Opinion 11) Hand tremor can sometimes be a problem.

47.  Robotic surgery is easier on you, but it does not produce better outcomes. (Chapter 24) 

48.  Remember, robotic surgery has a steep learning curve. Has your surgeon performed at least 500 robotic prostatectomies? (Chapter 19, Opinion 10)

49.  Is the robot that will be used in your surgery the latest version? Does it have a fourth arm? Does it include nerve monitoring equipment? (Chapter 19, Opinion 12)

50.  If you go to a teaching institution, make sure the person you think is performing the procedure is really performing the procedure. (Chapter 19, Opinion 14)

PENILE REHABILITATION

51.  Read Dr. Mullhal’s book, Saving Your Sex Life: A Guide for Men with Prostate Cancer and develop a penile rehabilitation program with your doctor prior to treatment. (Chapter 13) 

INCONTINENCE

52.  Go to a licensed physical therapist (Reference 40) who specializes in treating incontinence - do this before treatment and after when approved by your doctor. Remember, you have about a year to regain control. (Chapter 14 and Chapter 25)

SEX THERAPY

53.  Consider going to a certified sex therapist if you are experiencing relational problems due to ED. (Chapter 15)

METASTATIC DISEASE

54.  Seriously consider soliciting help from an NCCN institution. (Chapter 16)

55.  Consult with a radiation oncologist. 

56.  Involve a highly qualified medical oncologist early on in your treatment. (Chapter 16) 

57.  Investigate the possibility of adding whole-body hyperthermia treatment. (Chapter 17)

58.  Investigate the possibility of participating in a radiotherapy treatment clinical trial. (Chapter 18) 

YOUR ADDITIONS

59. Keep a pencil and paper by your side as you read this book. Add to and modify this list as you see fit.

____________________________________________________

"The world is full of wrens; be a red bird." ~ Nadine Whiteley

-------------- next part --------------
An HTML attachment was scrubbed...
URL: http://artsservices.uwaterloo.ca/pipermail/hopespringpcsg/attachments/20140131/2d550ae0/attachment-0001.html 