We have a lot of collective wisdom at this site. Let’s make a value-added list of posts with wisdom that newcomers might not be initially aware of, and help get them off to a great start on their “patient education” journey. When we see a newcomer joining HW/PC, we can say, "Welcome! Be sure to visit the thread called, 'Newly diagnosed with PC? — read this thread first.' " Let’s please avoid the goofy “posts about other posts” that don’t add value but consume space…let’s add to this thread only with information valuable to the PC newcomers in mind. Also, let’s please avoid the posts that begin with “Well, in my case…” which becomes a post "all about you," because this thread is not intended to be about what you did or what your case was. It’s intended to be a general reference thread of information for the PC newcomers. There are plenty of other threads to tell everyone all about you. Further to this same point, my message to the newcomers who will benefit from this thread in the future is that you can save your “thank you” replies for other threads because these types of messages will, similarly, clog the space in the thread. Let’s keep the all the thread entries focused on the points newcomers may not be initially know about prostate cancer. Added later as an edit: I’ll say “you are welcome” here to all those who have emailed me an offline “thank you” for having created this thread... This thread has the potential to live on for a long time, and be referenced by many people in the future. Let’s put our best foot forward. Let’s see if we can turn this into some good… IMPORTANT (although perhaps obvious) NOTE : this is not "medical advice," and should not be a substitute for medical advice; it is merely a collection of learnings and information about PC which often takes a while to be educated about I’ll get this started with a post which will help to guide future posts, and then you guys can help to carry this legacy forward . Here we go...best foot forward... Some of the tidbits of lessons learned/wisdom which may be added to this thread following this post will be intended for only one of these risk categories, others will be generic. If it is going to be valuable for only one of the risk categories, it will be helpful to indicate which one.
Get a notebook/folder and put all your medical appts/
Medications/insurance/lab work together. Take that note book to every appt you have. Also take notes and prepare questions to ask the Dr, some suggest a recorder. If possible have someone attend appts so they can take the notes and/or ask questions. Each appt will have SO much info it will be overwhelming.
This is not so much about the cancer but a way to help take in all the new information you will be given
Medications/insurance/lab work together. Take that note book to every appt you have. Also take notes and prepare questions to ask the Dr, some suggest a recorder. If possible have someone attend appts so they can take the notes and/or ask questions. Each appt will have SO much info it will be overwhelming.
This is not so much about the cancer but a way to help take in all the new information you will be given
These two labs are experts in PCa pathology and are recommended for second opinions on your biopsy:
www.bostwicklaboratories.com/Home.aspx
pathology.jhu.edu/department/services/secondopinion.cfm
www.bostwicklaboratories.com/Home.aspx
pathology.jhu.edu/department/services/secondopinion.cfm
Post Edited By Moderator (Tudpock18) : 2/10/2017 10:06:10 AM (GMT-7)
Know your PSA, not just the scores, what assay is used, what standard the machine is calibrated to (WHO or Hibritech - WHO will lower the score by 22% and can be misleading).
Try to always use the same lab, and make sure the lab uses the same assay, machine, and calibration every time you have your blood test.
Try to always use the same lab, and make sure the lab uses the same assay, machine, and calibration every time you have your blood test.
Many newly diagnosed men come to HealingWell looking for information. This thread contains information from solid resources which helps men get off to a great start on their “patient education” journey. Back in Dec 2011 ( HERE ), an outstanding list of links (with an accompanying brief, helpful explanation of each) was published here at HW/PC and was very well received by forum members. Site limitations prevented all the links from being added to the HW Welcome Page, so they have been updated and pasted here. The links provided here range from some being relevant only to high-risk men, to others being relevant only to low-risk men, and to others being relevant to all newly diagnosed men with PC
Casey,
In your 16 item resource list, very surprised that you don't include Walsh's "Surviving Prostate Cancer" book on your list. It's still the number one book recommended by these same "vets" to newcomers.
Certainly not implying its better than anything else listed, but it is considered the best primer for those new to PC. Just a suggestion, its your thread of course.
David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA 12/12 = 40.x
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012
Severe Chronic Pain, Severe Fatigue, & Urostomy
Member of Prostate Cancer & Chronic Pain HW Communities since 10/2008
“I live in the weak and the wounded” – Session Nine (Movie)
In your 16 item resource list, very surprised that you don't include Walsh's "Surviving Prostate Cancer" book on your list. It's still the number one book recommended by these same "vets" to newcomers.
Certainly not implying its better than anything else listed, but it is considered the best primer for those new to PC. Just a suggestion, its your thread of course.
David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA 12/12 = 40.x
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012
Severe Chronic Pain, Severe Fatigue, & Urostomy
Member of Prostate Cancer & Chronic Pain HW Communities since 10/2008
“I live in the weak and the wounded” – Session Nine (Movie)
My "What do to ask your Brachy/LAPR doc" lists might not warrant membership on Casey's list, but I think they are valuable to new folks. So, I'm posting this reply so anyone who needs them can find them in my signature below.
-Gedman
41y. Wife + 5 young kids.
DX 1/28/13: PSA 9, BX G3+4 (5 of 12 cores)
RALP 4/3/13 w/ Dr. Tewari
Nerves spared, T2c, N0, G4+3, tumor 10%, organ confined, -margins, -EPE, -SVI, +PNI
Full continence
Using pump+pills+bimix for ED rehab
about me: Intro / Plan / Surgery Recap / Pathology Report / PSA History
I recommend these links for anyone newly diagnosed with PCa:
NCCN Prostate Cancer online book (PDF download version)
Questions to ask a Robotic PCa surgeon
Questions to ask a Brachytherapy radiation seeds specialist
-Gedman
41y. Wife + 5 young kids.
DX 1/28/13: PSA 9, BX G3+4 (5 of 12 cores)
RALP 4/3/13 w/ Dr. Tewari
Nerves spared, T2c, N0, G4+3, tumor 10%, organ confined, -margins, -EPE, -SVI, +PNI
Full continence
Using pump+pills+bimix for ED rehab
about me: Intro / Plan / Surgery Recap / Pathology Report / PSA History
I recommend these links for anyone newly diagnosed with PCa:
NCCN Prostate Cancer online book (PDF download version)
Questions to ask a Robotic PCa surgeon
Questions to ask a Brachytherapy radiation seeds specialist
FOR LOW RISK PATIENTS
I posted the following on another thread with the intent of saying what I would do if I was diagnosed today with a low risk cancer. A couple of you have commented favorably about this so I thought it might be a reasonable addition to this thread for the newly diagnosed.
1. Getting a second opinion on my biopsy from Bostwick or Epstein.
2. Undergoing CDU or MRIS testing to ascertain the location and size of the tumors.
3. Having repeat biopsies at appropriate intervals based on the CDU results.
4. Getting a Prostavision (Bostwick) or bio-marker test to help determine the aggressiveness and prognosis of my cancer.
5. Adjusting my diet to help control cancer growth.
6. Using a physician who had considerable expertise in working with Active Surveillance patients.
The point being that far from "doing nothing" there are many things that the informed patient can do when faced with the possibility of low-risk cancer. Do these provide 100% certainty? Unfortunately, no. But they do provide an opportunity for the patient to significantly improve their odds of successfully avoiding invasive treatment.
Jim
Forum Moderator-Prostate Cancer. Age 62 (66 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally as of 7/13/13. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4 yr: .2. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
I posted the following on another thread with the intent of saying what I would do if I was diagnosed today with a low risk cancer. A couple of you have commented favorably about this so I thought it might be a reasonable addition to this thread for the newly diagnosed.
1. Getting a second opinion on my biopsy from Bostwick or Epstein.
2. Undergoing CDU or MRIS testing to ascertain the location and size of the tumors.
3. Having repeat biopsies at appropriate intervals based on the CDU results.
4. Getting a Prostavision (Bostwick) or bio-marker test to help determine the aggressiveness and prognosis of my cancer.
5. Adjusting my diet to help control cancer growth.
6. Using a physician who had considerable expertise in working with Active Surveillance patients.
The point being that far from "doing nothing" there are many things that the informed patient can do when faced with the possibility of low-risk cancer. Do these provide 100% certainty? Unfortunately, no. But they do provide an opportunity for the patient to significantly improve their odds of successfully avoiding invasive treatment.
Jim
Forum Moderator-Prostate Cancer. Age 62 (66 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally as of 7/13/13. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4 yr: .2. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
Post Edited (Tudpock18) : 7/24/2013 10:55:53 AM (GMT-6)
Excellent addition to this thread, Tud. I agree 100% on all 6 of your points. Couldn't imagine anyone not feeling that all six would help their odds, or as Casey says often, "stacking the odds in your favor", or something like that.
AS should begin to look like a very sensible alternative to any of the invasive treatments, especially to anyone with a low-grade "entry level" cancer.
Our combined histories here at HW PC are chocked full of negative stories from side effects, complications, set-back, etc, from those of us that underwent invasive primary and/or secondary treatments.
If there is any way for a man to sensibly avoid going through that, in my opinion, it should be on the top of their list for consideration.
david
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012
AS should begin to look like a very sensible alternative to any of the invasive treatments, especially to anyone with a low-grade "entry level" cancer.
Our combined histories here at HW PC are chocked full of negative stories from side effects, complications, set-back, etc, from those of us that underwent invasive primary and/or secondary treatments.
If there is any way for a man to sensibly avoid going through that, in my opinion, it should be on the top of their list for consideration.
david
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012
If you fit the criteria for AS, you owe it to yourself to try to calm down over the initial shock of a cancer diagnosis and take the necessary time to thoroughly explore your options. I would say that it takes a year to both calm down and properly inform yourself - there is no big rush for low-risk patients. Read every book you can on the subject, research the studies and check out the resources and websites listed on this site. Then after that time, go with the option that suits you best, whether that be more conventional treatment or AS.
B-year: 1959 PSA ~7.4
-1Biopsy: 2011; 2/12 positive, G6(3+3), both 30% T1c
-2012 Tesla 3 MRI - no nodules or progression outside prostate.
-2nd biopsy 2 /10 positive, G6, 40 & 70%
-3rd Biopsy July 2013 3/13 positive, G6, 1%, 5%, 40%
Active surveillance; following Ornish/Michael Milken-style diet
B-year: 1959 PSA ~7.4
-1Biopsy: 2011; 2/12 positive, G6(3+3), both 30% T1c
-2012 Tesla 3 MRI - no nodules or progression outside prostate.
-2nd biopsy 2 /10 positive, G6, 40 & 70%
-3rd Biopsy July 2013 3/13 positive, G6, 1%, 5%, 40%
Active surveillance; following Ornish/Michael Milken-style diet
Post Edited (Dreamerboy) : 8/1/2013 4:27:34 PM (GMT-6)
Welcome to all those newly diagnosed with prostate cancer.
A new diagnosis of "cancer" may stimulate initial feelings of fear, anxiety, or perhaps even "hysteria" (according to one very well-known physician who specializes in treating PC cases), or a "wall of shock."
Many men who have preceded you through that door called "prostate cancer diagnosis" would tell you that a solid patient education is the key to calming your fears and successfully addressing your individual & unique case.
A solid patient education takes a little time (perhaps understated), but this thread is intended to be a good starting point for you...
Welcome.
Please continue to help keep this thread focused on content...information for newcomers.
Tony, thanks! Now that this is a "sticky" post, I will also go back soon and remove the redundant "Welcome" message in green text, above, and enhance the "Welcome" in the very first post...at A Yooper's excellent suggestion.
( I will go back and delete this black text, too. thanks!)
Post Edited (Casey59) : 8/1/2013 10:24:37 AM (GMT-6)
I will delete this message shortly so that Casey can maintain the flow of this thread.
In all my years here at HW this is probably the best effort I have seen to proved useful information for the newly diagnosed.
Casey, thank you so much for your effort here. Peter has responded a request to make this the introductory thread for our well known Prostate Cancer forum by making it a sticky that will always remain on top of this great website..
Nice Effort!
Tony
Advanced Prostate Cancer Survivor
Patient Advocate and Support Group Leader
Not a medical professional!!!
In all my years here at HW this is probably the best effort I have seen to proved useful information for the newly diagnosed.
Casey, thank you so much for your effort here. Peter has responded a request to make this the introductory thread for our well known Prostate Cancer forum by making it a sticky that will always remain on top of this great website..
Nice Effort!
Tony
Advanced Prostate Cancer Survivor
Patient Advocate and Support Group Leader
Not a medical professional!!!
For any that happen to receive a Gleason 9 diagnosis, we have a thread where many others with that grade have posted their story. This is a group with some unique concerns, and it may be helpful to scan through what some others on that journey have encountered.
A key point is that this is a serious diagnosis that merits immediate attention, but there is definitely hope. Many options are available and there is much to learn in a fairly short time.
And of course, you'll want to start your own thread so others can provide support.
Say hi to the rest of the G9 crew on "The Gleason 9 Crew - Welcome and how ya doin'?"
www.healingwell.com/community/default.aspx?f=35&m=2863652
A key point is that this is a serious diagnosis that merits immediate attention, but there is definitely hope. Many options are available and there is much to learn in a fairly short time.
And of course, you'll want to start your own thread so others can provide support.
Say hi to the rest of the G9 crew on "The Gleason 9 Crew - Welcome and how ya doin'?"
www.healingwell.com/community/default.aspx?f=35&m=2863652
Radiation is commonly part of the therapy plan for a Gleason 9 case. Here is a link to a thread where you can view one of my radiotherapy sessions, in case you may be wondering what that is like:
http://www.healingwell.com/community/default.aspx?f=35&m=2878923
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 2 yrs: Lupron 5/1/13+Casodex 6/25/13
Age 55 @ Dx 4/16/13-
Bx 6/12 pos all on rt G9=5+4 (80%, 60%), 4+5 (2 at 100%, 80%, 10%), PNI confirmed
3T MRI: Bilateral EPE, NVB+, SV-, LN-, cT3
Date PSA fPSA
8/13 <0.1 (ADT, post-RT)
6/13 9.7
3/13 5.2 12% PCA3=31
9/12 4.1 15%
history since 2002 high/varying PSA, 3 neg bx
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 2 yrs: Lupron 5/1/13+Casodex 6/25/13
Age 55 @ Dx 4/16/13-
Bx 6/12 pos all on rt G9=5+4 (80%, 60%), 4+5 (2 at 100%, 80%, 10%), PNI confirmed
3T MRI: Bilateral EPE, NVB+, SV-, LN-, cT3
Date PSA fPSA
8/13 <0.1 (ADT, post-RT)
6/13 9.7
3/13 5.2 12% PCA3=31
9/12 4.1 15%
history since 2002 high/varying PSA, 3 neg bx
Post Edited (Redwing57) : 10/17/2013 11:40:44 AM (GMT-6)
Our friend Gedman has several very useful links in his signature that provide excellent info for newly diagnosed patients:
1. NCCN Guidelnes for PCa Patients. www.nccn.org/patients/guidelines/prostate/index.html
2. Questions to Ask Your Surgeon. www.healingwell.com/community/default.aspx?f=35&m=2637622#m2647572
3. Questions to Ask Your Brachytherapist. www.healingwell.com/community/default.aspx?f=35&m=2637621#m2638860
Thanks to Gedman for these excellent resources.
Jim
Forum Moderator-Prostate Cancer. Age 62 (66 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally as of 7/13/13. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4 yr: .2. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
1. NCCN Guidelnes for PCa Patients. www.nccn.org/patients/guidelines/prostate/index.html
2. Questions to Ask Your Surgeon. www.healingwell.com/community/default.aspx?f=35&m=2637622#m2647572
3. Questions to Ask Your Brachytherapist. www.healingwell.com/community/default.aspx?f=35&m=2637621#m2638860
Thanks to Gedman for these excellent resources.
Jim
Forum Moderator-Prostate Cancer. Age 62 (66 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally as of 7/13/13. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4 yr: .2. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
JohnT posted the following in one of our "regular" threads, but I thought it was important enough to add the this sticky thread for new patients. This is becoming an extremely helpful tool in diagnosis. I'm confident that new locations will be available as time goes on and we will add them to the thread.
There have recently been several posts of the usefulness of MRI guided biopsies and the following are locations in which patients can have this diagnostic procedure done.
ocations for 3T MRI guided biopsy for prostate cancer
(in order by zip code)
Link to video https://www.youtube.com/watch?v=QKKE8qirm9A
Scionti Prostate Center of Boston - Mass Bay Urology
100 Highland St.
Milton, MA 02186
Dr. Scionti
866-866-8967
http://www.drscionti.com/mri-guided-prostate-laser-ablation
Beth Israel Deaconess Medical Center
330 Brookline Avenue
Boston, MA 02215
617-735-2100
http://www.bidmc.org/YourHealth/HealthNotes/MedicalImaging/DiagnosticTests/ UsingMRIToDiagnoseAndTreatProstateCancers.aspx
Sperling Prostate center
630 Broad Street Carlstadt, New Jersey 07072
Dr. Dan Sperling
855-577-6782
http://www.sperlingprostatecenter.com/mri-guided-laser-procedure
Smilow Comprehensive Prostate Cancer Center
135 East 31st Street, 2nd floor
New York, NY 10016
Dr. Taneja
646-754-2400
http://prostate-cancer.med.nyu.edu/faqs/faqs-focal-therapy
Memorial Sloan-Kettering Cancer Center
1275 York Avenue
New York, NY 10065
Jonathan A. Coleman, MD
646-422-4432
http://www.mskcc.org/videos/thermal-prostate-tumor-ablation-interstitial-la ser-therapy
The Smith Institute for Urology
450 Lakeville Road, Suite M41
New Hyde Park, NY 11042
(516) 734-8500
http://interventionalurology.com/content/readMore1/infobox/services/templat e/default/active_id/178
Windsong Radiology Group
55 Spindrift Drive
Williamsville , NY 14221
(716) 631-2500
http://www.windsongradiology.com/services/mri-mra/prostate-mri/
The Johns Hopkins Hospital
401 N. Broadway, Baltimore, MD 21231
Katarzyna Jadwiga Macura, MD PHD
(410) 955-3580
http://urology.jhu.edu/katarzynamacura/education.php
Virginia Commonwealth University Medical Center
1101 East Marshall Street, Room 4-052
Richmond, Virginia 23298
804-828-4467
http://www.radiology.vcu.edu/patients/procedures/prostate.html
Emory University Hospital
1364 Clifton Road NE
Atlanta, GA 30322
Dr. Sheri Nour
404-712-1868
http://www.radiology.emory.edu/uploads/media/Rad_Report_August12_02.pdf
Partners Imaging Center
1250 S. Tamiami Trail, Suite 103
Sarasota FL 34239
Dr Richard Goldberg MD
(941) 951-2100
http://www.partnersprostate.com/
University of Cincinnati
234 Goodman St.
Cincinnati, OH 45267
513-584-1764
http://healthnews.uc.edu/news/?/21121/
UT Southwestern Medical Center
5323 Harry Hines Blvd.
Dallas, TX 75390
Dr. Claus Roerburn
214-645-8300
http://www.utsouthwestern.edu/education/medical-school/departments/radiolog y/research/programs/prostate-cancer.html
UTMB Galveston
301 University Blvd. Route 0709
Galveston, Texas 77555
Jacqueline Aoughsten, RN, ACNP-C
Dr. Eric Walser, Interventional Radiology
(409) 772-1831
http://www.youtube.com/watch?v=sHiMxkBSDrE
UCLA Institute of Urologic Oncology
David Geffen School of Medicine at UCLA
924 Westwood Boulevard, Suite 1050
Los Angeles, CA 90024
310-794-3566
http://urology.ucla.edu/body.cfm?id=547
Rolling Oaks Radiology Thousand Oaks
415 Rolling Oaks Drive, Suite 125
Thousand Oaks, CA 91361
Phone: 805-778-1513
http://mriprostatecancer.com
UCFS University of California, San Francisco
505 Parnassus Avenue, M-391
San Francisco, CA 94143-0628
Katsuto Shinohara, MD
415-353-7171
http://urology.ucsf.edu/people/katsuto-shinohara
The Prostate Centre
Princess Margaret Hospital
620 University Ave.
Toronto, ON M5G 1Z5
Michael Nesbitt
416-946-4501 ext.6897
http://focalprostatecancertherapy.com/focal-laser-ablation-therapy
Forum Moderator-Prostate Cancer. Age 62 (66 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally as of 7/13/13. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4 yr: .2. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
There have recently been several posts of the usefulness of MRI guided biopsies and the following are locations in which patients can have this diagnostic procedure done.
ocations for 3T MRI guided biopsy for prostate cancer
(in order by zip code)
Link to video https://www.youtube.com/watch?v=QKKE8qirm9A
Scionti Prostate Center of Boston - Mass Bay Urology
100 Highland St.
Milton, MA 02186
Dr. Scionti
866-866-8967
http://www.drscionti.com/mri-guided-prostate-laser-ablation
Beth Israel Deaconess Medical Center
330 Brookline Avenue
Boston, MA 02215
617-735-2100
http://www.bidmc.org/YourHealth/HealthNotes/MedicalImaging/DiagnosticTests/ UsingMRIToDiagnoseAndTreatProstateCancers.aspx
Sperling Prostate center
630 Broad Street Carlstadt, New Jersey 07072
Dr. Dan Sperling
855-577-6782
http://www.sperlingprostatecenter.com/mri-guided-laser-procedure
Smilow Comprehensive Prostate Cancer Center
135 East 31st Street, 2nd floor
New York, NY 10016
Dr. Taneja
646-754-2400
http://prostate-cancer.med.nyu.edu/faqs/faqs-focal-therapy
Memorial Sloan-Kettering Cancer Center
1275 York Avenue
New York, NY 10065
Jonathan A. Coleman, MD
646-422-4432
http://www.mskcc.org/videos/thermal-prostate-tumor-ablation-interstitial-la ser-therapy
The Smith Institute for Urology
450 Lakeville Road, Suite M41
New Hyde Park, NY 11042
(516) 734-8500
http://interventionalurology.com/content/readMore1/infobox/services/templat e/default/active_id/178
Windsong Radiology Group
55 Spindrift Drive
Williamsville , NY 14221
(716) 631-2500
http://www.windsongradiology.com/services/mri-mra/prostate-mri/
The Johns Hopkins Hospital
401 N. Broadway, Baltimore, MD 21231
Katarzyna Jadwiga Macura, MD PHD
(410) 955-3580
http://urology.jhu.edu/katarzynamacura/education.php
Virginia Commonwealth University Medical Center
1101 East Marshall Street, Room 4-052
Richmond, Virginia 23298
804-828-4467
http://www.radiology.vcu.edu/patients/procedures/prostate.html
Emory University Hospital
1364 Clifton Road NE
Atlanta, GA 30322
Dr. Sheri Nour
404-712-1868
http://www.radiology.emory.edu/uploads/media/Rad_Report_August12_02.pdf
Partners Imaging Center
1250 S. Tamiami Trail, Suite 103
Sarasota FL 34239
Dr Richard Goldberg MD
(941) 951-2100
http://www.partnersprostate.com/
University of Cincinnati
234 Goodman St.
Cincinnati, OH 45267
513-584-1764
http://healthnews.uc.edu/news/?/21121/
UT Southwestern Medical Center
5323 Harry Hines Blvd.
Dallas, TX 75390
Dr. Claus Roerburn
214-645-8300
http://www.utsouthwestern.edu/education/medical-school/departments/radiolog y/research/programs/prostate-cancer.html
UTMB Galveston
301 University Blvd. Route 0709
Galveston, Texas 77555
Jacqueline Aoughsten, RN, ACNP-C
Dr. Eric Walser, Interventional Radiology
(409) 772-1831
http://www.youtube.com/watch?v=sHiMxkBSDrE
UCLA Institute of Urologic Oncology
David Geffen School of Medicine at UCLA
924 Westwood Boulevard, Suite 1050
Los Angeles, CA 90024
310-794-3566
http://urology.ucla.edu/body.cfm?id=547
Rolling Oaks Radiology Thousand Oaks
415 Rolling Oaks Drive, Suite 125
Thousand Oaks, CA 91361
Phone: 805-778-1513
http://mriprostatecancer.com
UCFS University of California, San Francisco
505 Parnassus Avenue, M-391
San Francisco, CA 94143-0628
Katsuto Shinohara, MD
415-353-7171
http://urology.ucsf.edu/people/katsuto-shinohara
The Prostate Centre
Princess Margaret Hospital
620 University Ave.
Toronto, ON M5G 1Z5
Michael Nesbitt
416-946-4501 ext.6897
http://focalprostatecancertherapy.com/focal-laser-ablation-therapy
Forum Moderator-Prostate Cancer. Age 62 (66 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally as of 7/13/13. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4 yr: .2. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
Tall Allen has compiled some excellent questions for patients to ask if they are consulting with doctors about HDR Brachytherapy, LDR Brachytherapy and SBRT. These questions are presented below. Thank you Allen! (just added the other questions that Allen prepared)
Jim
SBRT doctor questions
1. How many have you performed?
2. How has your practice of SBRT changed over the years?
3. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?
4. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
5. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
6. What is the margin you will treat around the prostate? Is it less on the rectal side?
7. What is the prescribed dose to the planned target volume?
8. Do you work off a fused MRI/CT scan?
9. What machine do you use (e.g., VMAT, CyberKnife, step-and-shoot, Tomotherapy, etc.)?
• If CyberKnife: Do you use the IRIS or a new multileaf collimator?
• Do you set a limit on “hot spots”?
10. Do you use fiducials or Calypso transponders? Do you do transperineal placement of them?
o What system do you use for inter-fractional tracking?
o What system do you use for intra-fractional tracking?
11. In my treatment plan, what do you identify as “organs at risk” and what dose constraints do you put on them?
o What dose will my penile bulb receive?
12. How long does each treatment take?
13. How will I be immobilized during each treatment?
14. Are there any bowel prep or dietary requirements?
15. Should I avoid taking antioxidant supplements during treatment?
16. In your practice, among men who were fully potent, what percent remained fully potent 3-5 years later?
o Have any men retained some ability to produce semen?
o What is your opinion of taking Viagra preventatively?
17. Do you monitor side effects with the EPIC questionnaire?
o In your practice, what percent of men experience acute urinary side effects?
o In your practice, what percent of men experience acute rectal side effects?
o In your practice, what percent of men experience late term urinary side effects?
o In your practice, what percent of men experience late term rectal side effects?
18. What kind of PSA pattern should I expect following treatment?
19. What is the median PSA nadir you are seeing in your practice, and how long does it take to reach that, on the average?
20. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local SBRT failure, and was that focal or whole gland?
21. Are you open to email communications between us?
HDR Brachy monotherapies doctor questions
1. I assume we are talking about monotherapy only, without external beam radiation or hormone therapy – is that correct for my case?
2. How many monotherapies have you performed? How many combined with external beam?
3. How has your practice of HDR brachy changed over the years?
4. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?
5. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
6. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
7. What is the margin you will treat around the prostate? Is it less on the rectal side?
8. What is the prescribed dose to the planned target volume?
9. What is your treatment protocol? Number of insertions? Number of fractions? Dose per fraction? Can we vary those for convenience?
10. What kind of imaging do you use for planning? MRI? CT? US?
11. Do you increase dwell times in areas of known cancer?
12. Do you use fiducials or Calypso transponders?
13. In my treatment plan, what do you identify as “organs at risk” and what dose constraints do you put on them?
o What dose will my penile bulb receive?
o How do you limit urethral dose? (e.g., catheter)
14. How long does each treatment take?
15. How will I be immobilized/anesthetized during each treatment? What kind of analgesia is used?
16. Are there any bowel prep or dietary requirements?
17. Should I avoid taking antioxidant supplements?
18. In your practice, among men who were fully potent, what percent remained fully potent 3-5 years later?
o Have any men retained some ability to produce semen?
o What is your opinion of taking Viagra preventatively?
19. Do you monitor side effects with the EPIC questionnaire?
o In your practice, what percent of men experience acute urinary side effects?
o In your practice, what percent of men experience acute rectal side effects?
o In your practice, what percent of men experience late term urinary side effects?
o In your practice, what percent of men experience late term rectal side effects?
20. What kind of PSA pattern should I expect following treatment?
21. What is the median PSA nadir you are seeing in your practice, and how long does it take to reach that, on the average?
22. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local HDR brachy failure, and was that focal or whole gland?
23. Are you open to email communications between us?
Questions for LDR brachytherapists
1. How many have you performed?
2. How has your practice of brachytherapy changed over the years?
3. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?
4. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
5. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
6. For how long should I refrain from sex with a partner?
7. For how long should I refrain from close contact with people and pets?
8. Among men who are previously potent, what percent of your patients return to baseline?
9. Do you recommend ED meds as protective?
10. What kind of dose with which isotope do you use? Would adjuvant IMRT be given with that? Would hormone therapy be given with that?
11. How do you prevent seed migration?
12. Do you use “intra-operative planning” or some other technique to guide placement and assure adequate seed distribution? Do you use a template with ultrasound guidance, cone-beam CT or some other method?
13. What do you set as dose limits for organs at risk? How do you assure that urinary sphincters, the urethra, and the rectum are spared?
14. Do you do a follow-up CT or MRI after a month? How often do you find you have to go in again to treat cold spots?
15. How will we monitor PSA? What kind of PSA pattern can I expect?
16. What kind of aftercare (including sexual rehab) will you provide, and how will we monitor side effects, and for how long? Will you regularly monitor my urinary and erectile recovery progress with validated questionnaires like EPIC and IPSS?
17. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local LDR brachy failure, and was that focal or whole gland?
18. Are you open to email communications between us?
Questions for surgeons
1. How many of that technique (whether robotic, laparoscopic or open) have you performed? (1000+ would be a good answer)
2. In the last year, what was your positive surgical margin rate? (Should be close to 10% in total, less among men with stage pT2)
3. What is your "trifecta" rate? (tricky because you don't want cherry-picked patients)
4. What is your estimate of my risk for lasting incontinence; i.e., a pad or more after a year?
5. What about lasting stress incontinence? climacturia? penile shrinkage? inguinal hernia?
6. What kind of anastomosis technique do you use? (total - not just anterior)
7. Will the bladder neck be spared? How will you maximize the urethral sparing?
8. Will you take frozen sections and have a pathologist standing by to determine margins and how much of neurovascular bundles can be spared?
9. What measures will you take to assure the integrity of the neurovascular bundles?
10. What kind of penile rehab do you suggest?
11. Will you sample lymph nodes (PLND) or take extended lymph nodes (ePLND), or does it seem unnecessary for my risk level? If so, how will you find them (fluorescent dye)? How will you minimize risk of lymphocele and lymphedema?
12. What kind of aftercare (including sexual rehab) will you provide, and how will we monitor side effects, and for how long? Will you regularly monitor my urinary and erectile recovery progress with validated questionnaires like EPIC and IPSS.
Questions for a Salvage Radiation Interview.
1. What is the probability that I need salvage treatment? Do you calculate that from a nomogram?
2. Do you think I should get a Decipher test to find my probability of metastasis in the next 5 years? Do you know if my insurance covers it?
3. How large a dose do you propose for the prostate bed? (should be near 70 Gy)
4. Do I need concurrent or adjuvant ADT?
a. Why?
b. What's the evidence that it's useful?
5. How do you decide whether to treat the pelvic lymph nodes?
a. If so, at what dose? (50 Gy)
b. How do you plan to prevent bowel toxicity?
c. How will you account for the separate movement of that area and the prostate bed?
6. What do you think of doing this in fewer treatments (hypofractionation)?
7. What kind of machine do you use? (e.g., RapidArc, Tomotherapy, Vero, etc.) Why do you prefer that one?
8. What is the actual treatment time for each treatment? (faster is better)
9. What kind of image guidance do you propose? fiducials in the prostate bed? Using the fixed bones only?
10. How will inter- and intra-fractional motion be compensated for?
11. What measures do you propose to spare the bladder and rectum?
12. What side effects can I reasonably expect?
13. What probability of a cure can I reasonably expect, given my stats? Is there a nomogram you use to come up with that?
14. How will we monitor my progress afterwards, both oncological and quality of life?
15. What's the best way for us to communicate if I have a question or issue?
Questions for yourself
• Do I need to see a pathology report to tell me how contained it was?
• If I choose radiation, can I live with the fact that PSA goes down over a number of years, with bounces along the way, and never becomes undetectable?
• If the pathology is adverse and PSA does not become undetectable, am I prepared to undergo adjuvant radiation with all the potential side effects that entails? (Your doctor has hopefully run a nomogram showing the probability of this happening)
• If the radiation doesn't work, am I prepared to have a biopsy and possible focal brachy re-treatment?
• Which bothers me more - the potential for incontinence and ED after surgery or the potential for retention and irritative effects after radiation? (given the probabilities of those side effects)
• Do I understand the other possible side effects of surgery? (e.g., infection, hernia, climacturia, penile shrinkage, stress incontinence, etc.) Am I prepared to take on penile rehab?
• Do I understand the other possible side effects of radiation? (e.g., fatigue, proctitis, hemorrhoids, frequency, urgency, burning while peeing, ED).
• Am I prepared to undergo 8 weeks of radiation (5 weeks with combo therapy)?
• Am I prepared to undergo surgery and its recovery?
Forum Moderator-Prostate Cancer. Age 62 (69 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6 yr: .1, 7 yr: .1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
Jim
SBRT doctor questions
1. How many have you performed?
2. How has your practice of SBRT changed over the years?
3. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?
4. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
5. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
6. What is the margin you will treat around the prostate? Is it less on the rectal side?
7. What is the prescribed dose to the planned target volume?
8. Do you work off a fused MRI/CT scan?
9. What machine do you use (e.g., VMAT, CyberKnife, step-and-shoot, Tomotherapy, etc.)?
• If CyberKnife: Do you use the IRIS or a new multileaf collimator?
• Do you set a limit on “hot spots”?
10. Do you use fiducials or Calypso transponders? Do you do transperineal placement of them?
o What system do you use for inter-fractional tracking?
o What system do you use for intra-fractional tracking?
11. In my treatment plan, what do you identify as “organs at risk” and what dose constraints do you put on them?
o What dose will my penile bulb receive?
12. How long does each treatment take?
13. How will I be immobilized during each treatment?
14. Are there any bowel prep or dietary requirements?
15. Should I avoid taking antioxidant supplements during treatment?
16. In your practice, among men who were fully potent, what percent remained fully potent 3-5 years later?
o Have any men retained some ability to produce semen?
o What is your opinion of taking Viagra preventatively?
17. Do you monitor side effects with the EPIC questionnaire?
o In your practice, what percent of men experience acute urinary side effects?
o In your practice, what percent of men experience acute rectal side effects?
o In your practice, what percent of men experience late term urinary side effects?
o In your practice, what percent of men experience late term rectal side effects?
18. What kind of PSA pattern should I expect following treatment?
19. What is the median PSA nadir you are seeing in your practice, and how long does it take to reach that, on the average?
20. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local SBRT failure, and was that focal or whole gland?
21. Are you open to email communications between us?
HDR Brachy monotherapies doctor questions
1. I assume we are talking about monotherapy only, without external beam radiation or hormone therapy – is that correct for my case?
2. How many monotherapies have you performed? How many combined with external beam?
3. How has your practice of HDR brachy changed over the years?
4. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?
5. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
6. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
7. What is the margin you will treat around the prostate? Is it less on the rectal side?
8. What is the prescribed dose to the planned target volume?
9. What is your treatment protocol? Number of insertions? Number of fractions? Dose per fraction? Can we vary those for convenience?
10. What kind of imaging do you use for planning? MRI? CT? US?
11. Do you increase dwell times in areas of known cancer?
12. Do you use fiducials or Calypso transponders?
13. In my treatment plan, what do you identify as “organs at risk” and what dose constraints do you put on them?
o What dose will my penile bulb receive?
o How do you limit urethral dose? (e.g., catheter)
14. How long does each treatment take?
15. How will I be immobilized/anesthetized during each treatment? What kind of analgesia is used?
16. Are there any bowel prep or dietary requirements?
17. Should I avoid taking antioxidant supplements?
18. In your practice, among men who were fully potent, what percent remained fully potent 3-5 years later?
o Have any men retained some ability to produce semen?
o What is your opinion of taking Viagra preventatively?
19. Do you monitor side effects with the EPIC questionnaire?
o In your practice, what percent of men experience acute urinary side effects?
o In your practice, what percent of men experience acute rectal side effects?
o In your practice, what percent of men experience late term urinary side effects?
o In your practice, what percent of men experience late term rectal side effects?
20. What kind of PSA pattern should I expect following treatment?
21. What is the median PSA nadir you are seeing in your practice, and how long does it take to reach that, on the average?
22. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local HDR brachy failure, and was that focal or whole gland?
23. Are you open to email communications between us?
Questions for LDR brachytherapists
1. How many have you performed?
2. How has your practice of brachytherapy changed over the years?
3. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?
4. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
5. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
6. For how long should I refrain from sex with a partner?
7. For how long should I refrain from close contact with people and pets?
8. Among men who are previously potent, what percent of your patients return to baseline?
9. Do you recommend ED meds as protective?
10. What kind of dose with which isotope do you use? Would adjuvant IMRT be given with that? Would hormone therapy be given with that?
11. How do you prevent seed migration?
12. Do you use “intra-operative planning” or some other technique to guide placement and assure adequate seed distribution? Do you use a template with ultrasound guidance, cone-beam CT or some other method?
13. What do you set as dose limits for organs at risk? How do you assure that urinary sphincters, the urethra, and the rectum are spared?
14. Do you do a follow-up CT or MRI after a month? How often do you find you have to go in again to treat cold spots?
15. How will we monitor PSA? What kind of PSA pattern can I expect?
16. What kind of aftercare (including sexual rehab) will you provide, and how will we monitor side effects, and for how long? Will you regularly monitor my urinary and erectile recovery progress with validated questionnaires like EPIC and IPSS?
17. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local LDR brachy failure, and was that focal or whole gland?
18. Are you open to email communications between us?
Questions for surgeons
1. How many of that technique (whether robotic, laparoscopic or open) have you performed? (1000+ would be a good answer)
2. In the last year, what was your positive surgical margin rate? (Should be close to 10% in total, less among men with stage pT2)
3. What is your "trifecta" rate? (tricky because you don't want cherry-picked patients)
4. What is your estimate of my risk for lasting incontinence; i.e., a pad or more after a year?
5. What about lasting stress incontinence? climacturia? penile shrinkage? inguinal hernia?
6. What kind of anastomosis technique do you use? (total - not just anterior)
7. Will the bladder neck be spared? How will you maximize the urethral sparing?
8. Will you take frozen sections and have a pathologist standing by to determine margins and how much of neurovascular bundles can be spared?
9. What measures will you take to assure the integrity of the neurovascular bundles?
10. What kind of penile rehab do you suggest?
11. Will you sample lymph nodes (PLND) or take extended lymph nodes (ePLND), or does it seem unnecessary for my risk level? If so, how will you find them (fluorescent dye)? How will you minimize risk of lymphocele and lymphedema?
12. What kind of aftercare (including sexual rehab) will you provide, and how will we monitor side effects, and for how long? Will you regularly monitor my urinary and erectile recovery progress with validated questionnaires like EPIC and IPSS.
Questions for a Salvage Radiation Interview.
1. What is the probability that I need salvage treatment? Do you calculate that from a nomogram?
2. Do you think I should get a Decipher test to find my probability of metastasis in the next 5 years? Do you know if my insurance covers it?
3. How large a dose do you propose for the prostate bed? (should be near 70 Gy)
4. Do I need concurrent or adjuvant ADT?
a. Why?
b. What's the evidence that it's useful?
5. How do you decide whether to treat the pelvic lymph nodes?
a. If so, at what dose? (50 Gy)
b. How do you plan to prevent bowel toxicity?
c. How will you account for the separate movement of that area and the prostate bed?
6. What do you think of doing this in fewer treatments (hypofractionation)?
7. What kind of machine do you use? (e.g., RapidArc, Tomotherapy, Vero, etc.) Why do you prefer that one?
8. What is the actual treatment time for each treatment? (faster is better)
9. What kind of image guidance do you propose? fiducials in the prostate bed? Using the fixed bones only?
10. How will inter- and intra-fractional motion be compensated for?
11. What measures do you propose to spare the bladder and rectum?
12. What side effects can I reasonably expect?
13. What probability of a cure can I reasonably expect, given my stats? Is there a nomogram you use to come up with that?
14. How will we monitor my progress afterwards, both oncological and quality of life?
15. What's the best way for us to communicate if I have a question or issue?
Questions for yourself
• Do I need to see a pathology report to tell me how contained it was?
• If I choose radiation, can I live with the fact that PSA goes down over a number of years, with bounces along the way, and never becomes undetectable?
• If the pathology is adverse and PSA does not become undetectable, am I prepared to undergo adjuvant radiation with all the potential side effects that entails? (Your doctor has hopefully run a nomogram showing the probability of this happening)
• If the radiation doesn't work, am I prepared to have a biopsy and possible focal brachy re-treatment?
• Which bothers me more - the potential for incontinence and ED after surgery or the potential for retention and irritative effects after radiation? (given the probabilities of those side effects)
• Do I understand the other possible side effects of surgery? (e.g., infection, hernia, climacturia, penile shrinkage, stress incontinence, etc.) Am I prepared to take on penile rehab?
• Do I understand the other possible side effects of radiation? (e.g., fatigue, proctitis, hemorrhoids, frequency, urgency, burning while peeing, ED).
• Am I prepared to undergo 8 weeks of radiation (5 weeks with combo therapy)?
• Am I prepared to undergo surgery and its recovery?
Forum Moderator-Prostate Cancer. Age 62 (69 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6 yr: .1, 7 yr: .1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
Post Edited (Tudpock18) : 1/6/2016 12:42:29 PM (GMT-7)
This is from a recent post by Tall Allen. The moderators unanimously agree that this is worthy of being included in this permanent sticky thread:
I wrote these 3 years ago and decided to dust them off, with a few minor changes based on my more recent experiences with patients. There are 3 blogs:
Finding the Right Doctor
/pcnrv.blogspot.com/2017/12/finding-right-doctor.html
Managing the Doctor/Patient Relationship
/pcnrv.blogspot.com/2017/12/managing-doctorpatient-relationship.html
Second Opinions
/pcnrv.blogspot.com/2017/12/second-opinions.html
These are just my opinions based on my experience with patients. Feel free to agree, disagree, and relate your own experiences on those subjects. We can all learn from our pooled experience (especially me!)
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
•SBRT 9 yr onc. results •SBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog
Forum Moderator-Prostate Cancer. Age 62 (71 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-9 yr: 1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
I wrote these 3 years ago and decided to dust them off, with a few minor changes based on my more recent experiences with patients. There are 3 blogs:
Finding the Right Doctor
/pcnrv.blogspot.com/2017/12/finding-right-doctor.html
Managing the Doctor/Patient Relationship
/pcnrv.blogspot.com/2017/12/managing-doctorpatient-relationship.html
Second Opinions
/pcnrv.blogspot.com/2017/12/second-opinions.html
These are just my opinions based on my experience with patients. Feel free to agree, disagree, and relate your own experiences on those subjects. We can all learn from our pooled experience (especially me!)
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
•SBRT 9 yr onc. results •SBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog
Forum Moderator-Prostate Cancer. Age 62 (71 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-9 yr: 1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
Post Edited (Tudpock18) : 12/15/2017 10:48:46 AM (GMT-7)