Back from the Oncology Rehab consultation

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/5/2011 5:13 PM (GMT -6)   
After today's visit, wish I had started this 6 months ago, instead of the other place I went closer to home.  The head of the program, a woman with a docorate in Nursing and Nutrician, and formerly taught medical chemistry for 15 years, spent 2 hours going over my vast medical history.  Then I spent 1/2 hour meeting the physical trainer that she assigned to me.  I start 2 days a week starting next Monday, and then when I am stronger, they will move it up to 3 days a week.
 
She took down everything in detail.  My past cancers, and their treatments, my previous time with her facility, my entire PC history right down to each PSA score, etc.  She said she had never met a patient that could rattle off a total of 14 years of medical history in such detail without writing any of it down.  She asked me what I did, and I told her basically accounting, and she said that figured, that all accounting nerds were OCD about detail.
 
This is a dedicated oncology rehab center, I am surprised that I have never heard of any other guy going through a program like this except for me.  Most insurances cover it easily.  They have all state of the art equipment, hydrotherapy, yoga, spiritual help if needed, full tiDme oncology dieticians, etc.  She totally understood the severity of my faitgue, and how I needed to get boosted up in strength and stamina for whatever lie ahead for me.  My stay with them has been approved indefinitely, as long as needed.
 
The head person is a two-time breast cancer survivor and is still alive 11 years later with Stage 4 cervical cancer, which is amazing to me.  So she knows what it's like to be on the patient side.
 
This won't solve all my issues and problems, but I feel it was a pro-active thing to do on my end.  After leveling out a bit, I have taken a sharper downhill turn in the past 6 weeks.
 
As I start getting involved with this program, I will share some key points with folks here.  And if any of you need this level of service, don't be afraid to mention it to your doctor.
 
David in SC
 
 

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 5/5/2011 5:19 PM (GMT -6)   
Great news, David, I'm glad you found a place like that so you don't have to go it alone or with individual doctors like most of us do. I'm going to look for a place like that in my area. How did you find it, or how do you search under?
Age: 66
PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Continent right away, ED
Viagra, Cialis did't work, Trimix works well
Post-surgery PSA:
3, month: undetectable <.1; 6 month: undetectable <.014 (ultrasensitive); 9, 12, 15 month: undetectable <.1; 18 month detectable .05

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 5/5/2011 5:27 PM (GMT -6)   
Very interesting reading David. Sounds like you are in good hands in a healing environment. Will look forward to reading about this part of your journey.
Michael

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/5/2011 6:20 PM (GMT -6)   
reachout, seems like many larger hospital systems have specific oncology rehab programs. in my area, i always use the st. francis hospital system, and used their program 11 years ago. the only difference is that they have since moved to a newer building on the other side of the city. i don't remember where you live.

michael, thanks, this is phase 1 of my new plan, the rehab, phase 2 is seeing a higher level medical oncologist in june, and then see where i stand with my next psa reading on may 31
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 5/5/2011 6:47 PM (GMT -6)   
very pleased for you David

major (but gentle) hugs,
BRONSON
Age:55 -gay with spouse of 14 years, Steve -Peterborough, Ontario, Canada
PSA:10/06/09 3.86
Biopsy:10/16/09- 2 of 12 cancerous, 5% involvement -Gleason 7 (3+4)
Radical Prostatectomy:11/18/09
Pathology:pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA:04/08/10 -0.05 -Zero Club
PSA:09/23/10 -0.05 -Zero Club
PSA:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 5/5/2011 6:54 PM (GMT -6)   
David, I live in the Washington DC area and just found a reference to the Washington Cancer Institute that has a rehab program similar to what you described. Best of luck, and thanks for the tip.
Age: 66
PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Continent right away, ED
Viagra, Cialis did't work, Trimix works well
Post-surgery PSA:
3, month: undetectable <.1; 6 month: undetectable <.014 (ultrasensitive); 9, 12, 15 month: undetectable <.1; 18 month detectable .05

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/5/2011 7:20 PM (GMT -6)   
In DC, you should have many choices, glad you spotted something already
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

maldugs
Veteran Member


Date Joined Jun 2007
Total Posts : 784
   Posted 5/5/2011 10:44 PM (GMT -6)   
Hi there David, hoping all goes well for you.

Regards Mal.
age 67 PSA 5.8 DRE slightly firm Rt
Biopsy 2nd July 07 5 out of 12 positive
Gleason 3+4=7 right side tumour adenocarcinoma stage T2a
RP on 30th July,

Post op Pathology, tumour stage T3a 4+3=7, microcsopic evidence of capsular penetration, seminal vessels, bladder neck,are free of tumour, lymph nodes clear, no evidence of metastatic malignancy, tumour does not extend to the apical margins.

Post op PSA 0.5 26th Sept. Totally dry since catheter removed
PSA 23rd Oct.0.5 seeing Radiation Onocologist 31st Oct.
Started radiation treatment on 5th Dec, to continue until 24 Jan. 08.
Finished treatment, next PSA on 30th April.
PSA from 30th April 08, until now range- 0.5 to 0.6, I am now 70

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/5/2011 10:48 PM (GMT -6)   
Thank you Bro. Mal, best to you as well
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

beachbum50
Regular Member


Date Joined Sep 2007
Total Posts : 292
   Posted 5/6/2011 6:37 AM (GMT -6)   
smilewinkgrin  David, It sounds like you have found the right Center Of Excellence to get the treatment you should have recieved all these many years. These healers sound knowlegeable and compasionate and they will find the right path for you to follow. Your continued strength through all the problems you have encountered is nothing short of amazing. Thank you for sharing your journey with us.
 
Kerry
Beachbum
Beachbum

PSA 10 June 2007
Biopsy July 2, 15 of 16 samples positive
T2C
3+3=6
prostate weighed 40 grams
Di Vinci 10/09/07, four hours on table, 3 in recovery
Total time in Hospital: 29 hours, 3+4=7
Record for Dr. Lance, 65% of prostate had cancer, but NO spread, clean margins,Clean nodes,
First PSA at 5 weeks, UNDETECTABLE!
Update, 11/2010 Three year PSA still UNDETECTABLE

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/6/2011 8:49 AM (GMT -6)   
thanks, kerry, its at least a step in the last direction. i feel for the most part, the 5 1/2 months i had spent at the local PT center was all but a waste of time, they were in no way able to handle the special needs of an oncology patient.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 5/6/2011 10:48 AM (GMT -6)   
David:
 
I've been working out at a local gym. It is very nice, spacious, with a LOT of equipment (far more than I use).
 
Would my medical insurance cover any of this? I never thought of that. Somehow I doubt that they would cover a yearly membership (and I no longer itemize our taxes as we don't have enough deductions).
 
But, it's a thought.
 
On another tack, if she does have expertise in nutrition, then maybe she needs to kick your butt in that area (this is regarding some of you comments about all that delicious food you eat -- and I am PARTLY kidding you. Ask her about POM).
 
Mel 

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 5/6/2011 11:15 AM (GMT -6)   
David, I'm glad you found the right place that can hopefully improve your overall physical condition. With time you will get stronger and improve your stamina. If you chose to do ADT you will be able to cope better with the side effects. Good luck.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18, 21, 2 years <.008? ) undetectable
27 months: .005

Gleason 6
Veteran Member


Date Joined Mar 2011
Total Posts : 876
   Posted 5/6/2011 12:34 PM (GMT -6)   
David, after all you have been through, I'm glad that you found something worthy of your great mental attitude. I hope you can get your strength and endurance enhanced with people that you feel are right for you. You deserve it!
Age 61
PSA 4.3 9/10
PSA 5.5 2/11
PSA 7.1 3/11
Template Biopsy 6 pos out of 40 3/25/11 GS 6 (3+3)
CT bone scan neg
6/18 areas positive - 2 in left base, 4 left apex. 6/40 cores pos. 33cc.
Stage T1C
Meeting with Dr. Wehle @ Mayo 5/4/11

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/6/2011 12:35 PM (GMT -6)   
mel, most insurances will cover physical therapy and oncology physical therapy if needed, I know my BCBS does, and they paid 100% on it. all you need is your doctor to order it, its all it took with mine.

i will ask her about POM next Monday when I have my first real session, I already have a sneaking feeling I know what her answer will be.

Ed - that is exactly the game plan in mind. To be stronger before any future (if any) treatments are started, don't won't to be in such a weak state as I have been and still am.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 5/6/2011 1:26 PM (GMT -6)   
David:
 
You should also ask her about your overall diet (mine is probably not much better!!).
 
What I am getting at, regarding the gym:
 
I know I have had P/T for back problems and my insurance covered a good part of it. But that's with a licensed P/T.
 
Can my doctor actually prescribe a gym membership? I seriously doubt it, although it might be tax deductible (but probably raise a big red flag!!).
 
Mel (just thinking out loud here, killing time and drinking water before going for SRT)

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/6/2011 1:32 PM (GMT -6)   
I wouldn't think so Mel, on the gym membership part.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 5/6/2011 1:45 PM (GMT -6)   
Looked at my policy - public gym or health club expenses are explicity excluded. PT at a medical facility is payable where prescribed for rehab from a policy-covered illness/surgery. They explicity do not cover any costs for weight loss / lapband, etc. unless required by law (there are some new mandatory coverages).

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3804
   Posted 5/6/2011 1:49 PM (GMT -6)   
my gym membership (gold's, san jose) costs $10 a month plus $59 a year.  so the real cost is $15 a month which is cheaper than a 50mg viagra tablet. i.e.,  i can handle the cost cool .
 
ed
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/6/2011 3:07 PM (GMT -6)   
David said:
"This is a dedicated oncology rehab center, I am surprised that I have never heard of any other guy going through a program like this except for me. Most insurances cover it easily. They have all state of the art equipment, hydrotherapy, yoga, spiritual help if needed, full tiDme oncology dieticians, etc. She totally understood the severity of my faitgue, and how I needed to get boosted up in strength and stamina for whatever lie ahead for me. My stay with them has been approved indefinitely, as long as needed."

Well I like what they are saying to you, and I think that it's a good starting point as well. But you have heard me rattle off a few times here about how much i think that medical professionals take time to treat tumors but not all of the patients needs. The method to do that is called integrative oncology. Remember my link:

www.integrativeoncology-essentials.com

The Society of Integrative Oncology is a well established group that has participants such as: MD Anderson, Harvard University, Stanford University, UCSF, UCLA, Dana Farber, CTCA, etc.

Here is the SIO website:
www.integrativeonc.org

It is my personal opinion that every cancer patient should at least know about CAMs, Alternatives, and healthy lifestyle change opportunities that can improve their quality of life. And if you don't it's never too late to look into it.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/6/2011 3:23 PM (GMT -6)   
Can't argue with your post, Tony. Good info there.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/6/2011 7:20 PM (GMT -6)   
I'm so thrilled to hear that you had such a positive experience! Thanks for sharing and please keep us posted! All the best!
Father's Age DX 62 (now 65)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 0 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
April 2011 PSA <.02

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 5/6/2011 7:23 PM (GMT -6)   
David, I add my 'yahoooo' to DD and all who have gone before. It's wonderful to hear you being so positive! Good on you.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/6/2011 7:40 PM (GMT -6)   
thanks, DD, hope your dad is doing fine.

Sheldon, I have always been my own advocate, if I don't do it, can't expect anyone else to do it for me.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1148
   Posted 5/6/2011 9:30 PM (GMT -6)   
Hi David,

I am so pleased that you have found a way forward with trying to sort out this fatigue issue.
I am sure you were hoping like the rest of us here, that after the last surgery which got rid of the pain associated with the stritures that you would soon bounce back to a much more comforable life in which you could ride that bicycle in your shed with pleasure and ease.

I still so wish this for you but it may take a little longer. If anybody can get you there it would be this rehab centre of excellence.

Regards,
An
Husband's age: 52. Sydney Australia.
Family history: Mat. grandfather died of PC at 72. Mat. uncle died of PC at 60. He has hereditary PC.
PSA: Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA 27%)|Feb10 - 4.03 (free PSA 31%) |Jun10 - 2.69. DRE normal.
Biopsy 28Apr10: negative for a diagnosis of PC however 3 focal ASAPs “atypical, suspicious but not diagnostic” for PC. Review of biopsy by experienced pathologist, 1/12 core: 10% 3+3 (left transitional), 1/12 core: ASAP (left apex)
Nerve sparing RP, 20Aug10 with Dr Stricker. Post-op path: 3+4 (ISUP 2005). Neg (margins, seminal vesicles, extraprostatic extension). Multifocal, with main involvement in the fibro-muscular zone. T2C.
Post RP PSA,
Lab 1: Sep10 – 0.02|Nov10 – 0.03|Dec10 – 0.03|Feb11 – 0.03
Lab 2: Nov 10 - 0.01|Dec10 – 0.01|Feb11 – 0.01|Apr11 – 0.01
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