Fired My Doctor

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Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3208
   Posted 12/8/2008 6:45 PM (GMT -6)   
Hi guys and gals. How are we all doing tonight. Good I trust. This is Todd's Latest news. Just to recap. On my last post my onco told me that statisticaly speaking I have 36-40 months left to live. That was last week and my wife is still crying herself to sleep each night. She cant hold me or allow herself to be held. I fired my onco. Demanded a second opinion  and requested a referal to a prostate cancer specialist. (never tell me the odds)rof****. Where does this guy get off. He is not God. The only thing we advanced guys have is hope and faith and a positive attitude and this s.o.b. just took a crap on it. That is why he is only practicing medicine. I intend on being here to prove to the next batch of advance guys that it is not a death sentence. Todd
11/29/08 P.S.A. 1.49


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/8/2008 7:05 PM (GMT -6)   

Hi Todd,

I love the fire!  You are right.  Statistics are for a general practice, but they don't apply to everybody.  Each and all of us a different as is our experience with prostate cancer.  I know of guys that have done well when they were told to get their things in order.  The fact is that no one can predict how one might react to treatments.  Especially clinical trials and investigational trials.  I believe you may want to learn about them.  I have listed the current search of over 200 prostate cancer clinical trials at the National Cancer Institute...Clinical Trials ~ Click Here!

Also, there are more friends that may help you at The New Prostate Cancer InfoLink.  I am an active member there.  In addition, I can hook you up with the prostate cancer list-serv mailers.  If you are interested, just call me and I'll walk you through it. 

The InfoLink: www.prostatecancerinfolink.ning.com

Always your friend!

Tony

 


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 672
   Posted 12/8/2008 8:12 PM (GMT -6)   

 I admire your good attitude.  We are all on board for a limited trip.  Three and a half years is still quite a long ways away and many things can happen to extend that time. 

Heck, I keep looking ever my shoulder to make sure I don't get run over by a garbage truck.

So, keep on truckin.. so to speak. yeah


PSA up to 4.7 July 2006 , bump noted during DRE
Biopsy 10/16/06
stage T2A  -  Psa 4.7
Gleason  4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8
No extension or invasion found
No continence problems
PSA 90 day (-.01)  , (6 month -.01) , (9 month +.02) , (1 year +.02) ( 18 months +.02)
ED still a problem, minor succces with bi-mix
plaque buildup due to injections 
 
 
 


Tra96
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 12/8/2008 8:15 PM (GMT -6)   
Good luck to you and your wife Todd. I am just starting this process with my husband. I am so thankful to have found you guys here. I too admire your attitude. I believe you will beat this cancer with that kind of attitude. I know how your wife is feeling as well. I hug my husband any chance I get but know the fear she is dealing with. I look forward to reading about your journey/fight.

IsleofGough
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 12/9/2008 10:19 AM (GMT -6)   
As a surgeon who does lots of cancer operations, I can say that people rarely die at the statistical average. I've known two colleagues who had bad tumors (one metastatic lung, one metastatic tongue) who had "statistically less than 6 months to live" that both lived more than 10 years from that point. I've also known relatively small low risk cancers to metastasize early and shorten the life expectancy considerably from what one might have predicted. Mathematically speaking, the standard deviation for life expectancy is pretty large for most cancers. Secondly, published studies that have any sort of follow up were done a moderate time ago. Often current treatments have been modified and ongoing studies are not complete. If one lives for a year or more, there is a good chance that therapy will improve and there is no predicting what treatment and successes will be available at that time. I think it is misleading and inaccurate to make any non short term life expectancy determination with any accuracy beyond "probably weeks", "probably months", or "probably years". You may be hit by a bus tomorrow. I've had two cancers myself and all I can say is that live is much more unpredictable than people wish to think.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 12/9/2008 10:24 AM (GMT -6)   
Good for you Todd, that had to feel good. Did your former doctor have some guide book with your name on it, telling an endtime with such specifics? You are you, and your fight is yours alone, and it sounds like you been doing a hell of a job thus far. I feel for your wife in this situation, as I know how brave mine has been through this whole process, yet I know it's just eating her up alive inside.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 203
   Posted 12/9/2008 11:06 AM (GMT -6)   

Todd my prayers with you , however the only way to beat ANY CANCER is atitude and fight , most PC are survivable  even if advanced , the basic preventive treatment is usually good Nutritions , and i would offer my 2 cents and say to change your diet immediatly to nutritional fruits and vegies diet, then go see a good Uro  asap.... and please keep posting for us to hear the good news ...

Good Luck  and god bless you !!! smilewinkgrin


April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!


IsleofGough
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 12/9/2008 2:35 PM (GMT -6)   
With all due respect, while bad nutrition hinders the body in lots of ways, the diet proposed would have little to do with prognosis. Even being a "fighter" has little to do with live expectancy, beyond a very small influence. Most of disease has to do with physiology and that fact we are humans that age. The reason I mention this is that sick people are often told they didn't fight strongly enough, didn't have enough faith or prayer, didn't do yoga or eat enough vegitables, etc. I think eating right, being the right weight, getting exercise, and reducing stress help general health; but they are no guarantee against illness or even survival. Even children occasionally get cancer through no fault of their own. (bad genes or some fluke in dna repair).

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4823
   Posted 12/9/2008 3:22 PM (GMT -6)   
"My doc gave me six months to live..When I told him I wouldn't be able to pay his bill, he gave me another six months."
 
Laughter is my favorite medicine...Beats the heck out of crying idea
Age 53   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Gleason - 6
(biopsy done March 4, 2008-> 2 of 12)
 
06/25/08 - Da Vinci robotic laparoscopy
10/03/08 - 1st Quarter PSA -> less then .01
 

Surgeon - Keith A. Waguespack, M.D.

Las Colinas and Plano Offices

 


War-eagle
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 12/9/2008 3:52 PM (GMT -6)   

Todd,

I wasn't supposed to make last Easter. My "New" oncologies has as much hope and faith that I do. Tony is right about checking for clinical trials. I am on one now. I am taking Abiraterone. I am only two weeks into it. But after having failed at all other treatments, including chemo, we are moving forward. I plan on being there with you to greet the new guys. Having PCa is no piece of cake. With the bone pain and side effects from treatment drugs, life does change. But our faith keeps us strong and our love for, in my case my sweet wife Johnnie, keeps me moving forward. Life goes on. We are planning on going on a cruise in January.

Keep up the fight. You have team members here to do some blocking for you. You can block when we carry the ball.

Love, peace, and WAR EAGLE, baby

Walt 


Age: 55 ( still alive at 55)
PSA 43 7/2005
Biopsy 12/14 Gleason 7 & 9
Divinci 9/2005 - spread to bladder
HT - 10/2005 (Eligard every 6 months)
RT - 10/2005 (38 treatments)
PSA 0.12 to 1.9 2/2007
Bone Scan and CT 4/2007 Bone mets
Casodex 4/2007
Zometa infusions 4/2007
PSA 4.8 8/2007
PSA 6.34 12/2007
Radiation (15 treatments) started on bone mets 12/2007
PSA 6.72 1/2008
PSA 8.23 2/2008 - Starting prednisone for 30 days
PSA 14 2-29-2008 - start chemo on 3/12
PSA 12.82 3/1/2008 round one chemo
PSA 12.24 4/2/2008 round two chemo 
PSA 10.86 4/24/2008 round three chemo
PSA 10.4 5/15/2008 round four chemo - increase dosage next month
PSA 12.98 6/5/2008 round five chemo
PSA 13.63 6/26/2008 round six chemo
PSA 10.46 7/17/2008 no chemo
PSA 4.56 8/28/2008 no chemo, Zometa and 6 month Eligard shot
PSA 9.25 12/1/2008 start clinical trial
 
"I will persist without exception - I will find a way where there is no way"


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 12/9/2008 4:20 PM (GMT -6)   
Hi Todd,

Remember what Mark Twain said about statistics. "There are lie, darn lies, and statistics". Good luck to you.

Don
Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
Chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
PSA test on July 14, 08 after 8 weeks hormone .82
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
Second Lupron shot 09/11/08
Next PSA test by oncologist 03/09
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/9/2008 6:42 PM (GMT -6)   
You have the fire in your soul and an obvious determination to win. The type of person who makes the most of their life. Statistics are individually meaningless being just an average of a group of numbers. This life is a bumpy ol' ride at times so all we can do is hang on tight and enjoy it's many little pleasures.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3208
   Posted 12/10/2008 1:00 PM (GMT -6)   

Hi guys,

   I met my new Doc yesterday. Wow! What a difference. He is the husband of the head nurse at the onco unit and was actually retired. He came out of retirement to treat me at the request of his wife. I must have made a good impression. Already the difference in my care is like night and day. He is a doctor who I can believe in because he also believes in me. He ordered a whole round of scans and bloodwork and found three trials he wants to try me on before I ever start chemo. He believes in total healing. Mind, Body, Spirit, and is writing a treatment plan that includes working out and diet. Todd


11/29/08 P.S.A. 1.49


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 12/10/2008 2:07 PM (GMT -6)   

Hey Living,

That's great news on the new doctor.  That does make all the difference in the world.  I have had the same GP for almost 15 years, he knows me inside and out, the same oncologist since 2000, and I ended up with the reputed best Urologist/Surgeon in my small state.  This should change your attitude about what you are dealing with bigtime.  I don't like dr. that are game show hosts, I like them to be up to date at all time in their field, and don't like things sugar coated, I can only react to reality, not fantasy, even when that reality sucks.  Good luck to you ahead.

David in SC

 


Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3208
   Posted 12/10/2008 3:31 PM (GMT -6)   

I want to thank everyone here at hw for all the support and understanding that you all give. I wish I could hang out with all of you. Maybe we should have a healing well convention somewhere where the water is blue and we can drink margarittas all night long. Thank you all. Todd P.S. age at dx was 42 on 6/3//06


dx:06/03/08
Age at dx: 42
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months

Post Edited (living1963) : 12/10/2008 2:37:44 PM (GMT-7)

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