Finally: Starting Out-Patient Oncology Rehab & A Personal Opinion

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/11/2010 9:32 AM (GMT -6)   
After almost a full year's delay, finally going to start a well needed out-patient oncology rehab program.  Was suppose to start late last year, after my SRT ended, but it never happened.  I ended up fighting all that terrible post radiation damage and pain, and was stuck on the suprapubic catheters for nearly a year.  Now the program is being tailored for the fact that I have been through Radiation twice in a 10 year period, that I endured 8 ops in 23 months, and that I have a urostomy now, chronic fatigue syndrome, and now my current recovery.
 
I start next week, Thursday, so won't have a full idea of what I am getting into, or a schedule until then.  It's expensive, insurance only covers small portion, but let's just say, I have a patron that has made sure that I will be able to go the full term of the program, for which I am thankful.
 
Believe it or not, I am taking another self imposed break here from HW. This is my last post for the month of November, I will see how I am feeling and doing at the first of December.  I may be out December also.
 
I don't feel my services here are really needed any more on a regular basis, lot of new faces, somewhat different tone to the place from what it use to be, etc.  Like it better when it was more what it was suppose to be, a support site - patient  to patient, not happy with the endless debates about reports and research that even the doctors can't agree on, don't feel that offers anything positive to those fighting PC or those new to PC in my opinion.  Then more and more"psuedo" medical advice is being offered here, they may not label it the same way, but it has the same effect.  There's even a difference in respect and tolerance - that's not a good change IMO.  Just needs to return to its roots - as there will always be an endless stream of newly diagnosed men coming here, or their wives or daughters - all of them scared of the dx, unsure what to do, afraid of dying from cancer - these are the folks I feel we need to help and support.  For those that want to have these intellectual debates,  perhaps a new site could be set up, and they could debate each other.  Just like the Frank site is great for those with very technical and graphic ED issues, so could a "PC Research & Study" site be, for those that like to pick apart all the never ending studies and PC reports.  If doctors and true experts don't agree on this stuff, why would a patient be expected to know better?
 
Those that have my phone number are free to call, and my email address is very public so that anyone can reach me by email.
 
Good luck to one and all.
 
David in SC

Post Edited (Purgatory) : 11/11/2010 8:42:21 AM (GMT-7)


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 11/11/2010 9:40 AM (GMT -6)   
David - wishing you all the best with your rehab and your vacation from HW and I understand your reasoning and need for the break.

I am grateful for the support I got during my dark days post surgery - but HW has changed its tone and not as comfortable a place to drop by as before ..... so am lurking and doing the occasional congrats to those in the zero club ( PSA <0.10 - and yes, there is no such thing as an absolute zero - it is a concept - a symbol of remission - of hope ... )

Wishing you and Peggy and your wonderful family all the best.
hugs
BRONSON
Age: 55 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB
Sept 23, 2010 -0.05 - again -hoorah !

Post Edited (tatt2man) : 11/11/2010 8:17:47 AM (GMT-7)


bsjoplin
Regular Member


Date Joined Feb 2010
Total Posts : 308
   Posted 11/11/2010 9:45 AM (GMT -6)   
take care buddy: we're wishing you all the BEST
drop on by when you've a mind to, as they used to say...
bob

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6980
   Posted 11/11/2010 9:52 AM (GMT -6)   
We'll be cheering for you!

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 11/11/2010 11:24 AM (GMT -6)   
Good luck Dave you'll be missed but I believe you'll be back soon. It's just in your nature to help others.

I do recommend getting away from here at times and have myself, but in time you'll look in and see how friends are doing. No matter you've given of yourself here more than I and most others for sure and many men are grateful even if they don't say it to you. Good luck, buddy and enjoy life to its fullest.

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 11/11/2010 1:49 PM (GMT -6)   
Hi David.
Sorry to read that you will be taking a break from HW to pursue the next
chapter in your journey. We will miss your support and wisdom that you freely
gave to us in support of our own journeys. I understand and agree with your
assessment of the changes that have occurred in the way HW has changed in the last few years. I too have distanced myself somewhat from this site to make room for the more knowledgeable people and "pseudo" medical experts. Perhaps the change is good, but I felt more comfortable with the earlier compassion  and encouragements between patience here at HW.  
Anyway, David, all the best to you in your future. Looking forward to your
return in a few weeks.
 
Your friend,
Mag

Born 1936
PSA 7.9, Gleason Score 3+4=7, 2 of 8 positive
open RP Nov 06, T3a, Gleasons 3+4=7, Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; at SRT Start=0.1, Salvage RT completed (33 days-66Gy) 19 Dec 08
PSA: in Jan 09 =.05, all tests to date (Jul 10) <.04

sheepguy
Veteran Member


Date Joined Nov 2010
Total Posts : 763
   Posted 11/11/2010 2:10 PM (GMT -6)   
I posted as a non participant a few days ago commenting on the civility on the forum...I guess everything is relative..LOL. Still I kind of see what David means. There is a lot of amateur advice given that sounds like it its meant as gospel. Not that strong opinions based on your experience are necessarily bad..but on occasion it almost looks like guys are taking advice from this forum of patients as opposed to their doctors,,and there is a preponderance of anecodotal "evidence", again, not saying that is altogether bad but might be a little off putting and on occasion dead wrong.
Don't know if that "tone" is suitable for the forum...I'm just sayin'.

Good luck to all you guys anyway.

Jim

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 11/11/2010 4:32 PM (GMT -6)   
David, I have enjoyed your presence here, but often not your news. All PCa treatments have risks, and you have eloquently illustrated some of those risks.

I'll bet your rehab does not include sitting in front of a computer screen so I expect you to stay away and concentrate fully on your rehab. And when you feel like it, come back and let us know how you are doing -- some of us old timers will still be lurking. Go well :-)

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 11/11/2010 5:13 PM (GMT -6)   
 
 
David,
 
Take care my friend I understand where you are coming from you have always provided me support and the encouragement to make my own choices.
 
Jerry1

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 11/11/2010 7:25 PM (GMT -6)   
Good luck, David (I give him 3 weeks) devil smilewinkgrin

The problem of having a 'freer' or more loosely moderated forum is that the more prolific posters and set the tone and actually control the pace and direction. I understand what you are saying, but there seems to be nothing much that can be done, short of really tightening down on the mods editing and actively guiding the forum by deletes, edit and chiding people just to acheive and end that I/we decide is the more appropriate. That's one step I won't take. I suppose it is a natural cycle for things to change, nothing remains static for long, especially something as complex and intricate as this.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh
ED continues: Bimix .30cc & Trimix .15cc PRN

Post Edited (James C.) : 11/11/2010 5:43:14 PM (GMT-7)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7211
   Posted 11/11/2010 7:46 PM (GMT -6)   
David:
 
It's good to take a break once in awhile, so good luck and best wishes for a successful program.
 
I guess I do not totally agree with your comments. The problem is that PC itself has almost no absolutes. That's a big problem. I have asked questions such as should one do HT before SRT and also questions about diet. The problem is that one study suggests one thing and another contradicts it. Frankly I welcome some of that discussion (regarding the latest ideas/research). You seem to think that's a negative; I don't.
 
There are a few folks with axes to grind at times. I did treatment X and it worked for me so that is the best treatment. Still, if one reads through the totality of posts, one can gain a lot of knowledge.
 
I started with very little knowledge. Once I got the dreaded news at my August, 2009 physical that my PSA was up, I started doing plenty of research. The folks at HW were invaluable, giving me answers and suggestions, including some books to read and otheer sources of information.
 
I AM CONVINCED THAT THIS WOULD BE EQUALLY TRUE TODAY FOR SOMEONE STARTING THIS JOURNEY.
 
The moderators have been great, employing just the right amount of control.
 
Anyway, good luck.
 
Mel
 
 

qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 11/11/2010 7:53 PM (GMT -6)   
David, so glad to know you are doing great and recover from surgery. Keep us posted please.

take care

Jennifer

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 11/11/2010 8:20 PM (GMT -6)   
David,I wish you the best in your rehab. Your absence from HW will be missed especially by the new members. You have helped me a lot in my journey. Thanks. Come back soon.

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2670
   Posted 11/11/2010 8:26 PM (GMT -6)   
Take care of yourself, David.  I'm relatively new to the forum, but I quickly learned that you are well liked and highly respected here.  Happy Thanksgiving to you.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/11/2010 11:17 PM (GMT -6)   
Thanks to all that posted, wanted to acknowledge your replies before signing off.

James: you said I give him 3 weeks, would make sense, since I said I would be gone till the end of the month, and its the 11th today, so that's about exactly 3 weeks from now till the 1st. I don't feel that HW needs to be static, and that is not what I am talking about, the right kind of change is good. My heart and concern has always been for the new guys, those just starting their journeys, its what attracted me to this place to start with. I guess we all have different reasons for being here, and different motivations, I can only speak for my own mind and heart. If you remember, I was a moderator for a short season, then I chose to resign the position, as I felt I couldn't speak freely in good conscience. I still agree with that decision.

Mel: I don't need you to agree or not agree with my stated opinion on this thread. Again, you are reading too much into things, I was clearly stating my personal opinion, and since I have been here over a year longer than you have, I can see big differences in the tone and attitude of the place. Those that have been here longer than me, would even talk of even more changes. Some are for the good, some aren't.
I never said that discussion on certain topics was a negative to me, you missed my point entirely. One again, and you have done this a lot lately with me, you are trying to answer for me. I don't expect everyone, or anyone as far as that goes, to agree with me. I tick my own way, and often think butt backwards to a lot of people, blame that on the strong left-handedness I was born with. Often my logic is reverse of most people, and for that, I make no apologies. It's just who I am. I don't like to confuse many that are new to PCa, to all the academic fine-pointing that goes on here from time to time. Most of us are way beyond the days of college debates. My interest, again, is to help guide those entering our gates, to help aleviate their fears, to answers their basic concerns, and to support their decisions.
_________________________




I will be back in the near future, got a lot on my plate again, my recovery from this last surgery is still on-going, and is now entering the second phase. It's been tough as hell, I am the first to admit it. Doing the best I can to make it back, and hoping, that my PSA is stable, and that my SRT for all the damage it has caused me, is at least working for a while longer.
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 marg
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 11/10 Not taking it
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 9/23/10

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 757
   Posted 11/11/2010 11:48 PM (GMT -6)   
Best wishes Dave, see you when you return.

DJ

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1149
   Posted 11/12/2010 7:45 AM (GMT -6)   
Hi Dave,

I hope you have a good break from this site and enjoy your rehab and the Christmas period. There is so much to consider beyond PCa. I think we will all miss you even for this short period because you do bring balance and your point of view.

I think that everybody deals with PCa differently, some people are looking for a shoulder to lean on or to share what they are going through and for some people support comes through asking a question or starting a discussion about what something medical means to a group of people who are not doctors but collectively know a whole lot. Although I really appreciate the emotional support that we have got from this site, for us an equally important part of the support was researching the disease and finding what other people had learnt and what they had concluded from what they had learnt. We were not looking for statements of fact or established medical opinions but we were looking beyond blindly listening our specialists or a book or a website that could have been written years ago. It made us feel much more in control of our destiny. So for us the support was both emotional and intellectual.

Wish you all the best for the next month or two and I hope you gain some weight!

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 involvement in the peripheral, apex, fibro-muscular and transitional zones.
Post RP PSA, Sep10 – 0.02

CharlieTuneA
Regular Member


Date Joined Aug 2009
Total Posts : 37
   Posted 11/12/2010 9:43 AM (GMT -6)   
Good luck, Dave. Although I don't post regularly, I do a lot of lurking, and know you are one of the stalwarts around here. Your perseverance through tough times is remarkably courageous. Hope to have you back on board soon.

-Charlie
Age at diagnosis 59, PSA 1.4
Biopsy 12/08 12 cores, 6 positive
Gleason 3+3=6
CAT scan negative.

DaVinci surgery 6/16/09
After 10 days, cystogram revealed fistula
Catheter Removed 7/17/09
Fistula still evident week of 8/24
PSA 0.03
Catheter Reinserted 8/28/09
2nd catheter removed 9/28/09
 
Started course of imipramine on 2/4/10 for incontinence
ED? - more like non-function than dysfunction.

Bandersnatch
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 11/12/2010 10:58 AM (GMT -6)   
     Thanks for your role in making this site a patient to patient support site. Sometimes have to sift thru the BS but I am always able to find the fellow with the situation I'm interested in.
   Good luck on your journey, please come back and visit when you can.

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 311
   Posted 11/12/2010 11:10 AM (GMT -6)   

I agree with Mel.  I come here occasionally - not as often as I used to, granted - precisely to see if there are new studies out and what if any significance I might attach to them.  I like these discussions, and I don't mind at all if people have strong views.  I'm perfectly capable of filtering out the heat to get to the light.

Which as I understand it is exactly why Purg is taking a "vacation" from HW.  [Although, James, your 3 week estimate seems pretty optimistic for someone with over 8,000 posts smilewinkgrin ]  I do wish you a speedy and easy recovery, Purg, in case you're sneaking a peak.

Zen9


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7211
   Posted 11/12/2010 11:28 AM (GMT -6)   
David:
 
We only disagree slightly. OK, you have been here longer. I can only comment about the last 15 months or so.
 
Again, I don't mind the tone and the occassional controversy. Many of us get somewhat opinionated, but it seems that we all manage to restrain ourselves. This is a support group and there is a wonderful amount of support here, more than anywhere else I've seen (and I have looked elsewhere -- I think you have said this is the only group you have frequented). Check out any discussions on religion and politics on other boards. THERE you will really see what controversy (and nastiness) really is. Thank goodness we don't have any of that here.
 
Again, David, good luck to you and I'll look forward to your return.
 
Mel

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 11/12/2010 12:59 PM (GMT -6)   
David, I hope your recovery continues and look forward to see a good progress report by the end of the month. Thanks for all of your post.
 
Age 48 at diagnosis
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
22 month  PSA <.04
continent at 10 weeks (no pads!)
ED is still an issue

julios
Regular Member


Date Joined Jun 2010
Total Posts : 38
   Posted 11/12/2010 1:16 PM (GMT -6)   
I'm relatively new to the site, and just want to comment how valuable I have found it to compare how others have treated their PCa when their case was similar to mine. True, at least most of us are not experts, but it amazes me the differences I see from one doctors approach to another. Most of the time that's because the patient is different, but not always THAT defferent. If nothing else, it helps us to ask the right questions. I'm also grateful for research that is shared hear, and certainly prefer copy or link of the original source as opposed to an interpretation of it.

Best wishes to David
Age 52

At Diagnosis of PCa, had Gleason 9 and normal PSA

Radical Prostatectomy on July 7th, 2010 by Dr. Fagin using daVinci

25% to 50% nerves spared on left, 100% spared on right.

Continent from day one.

Pathology showed postive margins and extension beyond gland, including seminal vesicals and lymph nodes. Stage upgraded to T3b.

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 697
   Posted 11/12/2010 5:32 PM (GMT -6)   
David,
Best wishes and may all your prayers be answered and you hopes realized.
 
Mr. Bill

jerseycity
Regular Member


Date Joined Nov 2008
Total Posts : 123
   Posted 11/12/2010 6:49 PM (GMT -6)   
David,  you and I came aboard about same time. Our courses have taken different paths. Love your  moxie. CARRY ON.
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