A Personal Interest

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Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2358
   Posted 10/24/2009 12:50 AM (GMT -6)   
Before I got prostate cancer, I was tested every year beginning at age 40, but never gave  the reality of a prostate cancer diagnosis more than a fleeting thought.
 
One of the problems, in my opinion, with many so-called experts on prostate cancer treatment, is that it remains merely theory without first-hand, personal experience.  
 
The reason that so many of us, I think, are so ferociously adamant about screening is that we know what it is to hear the words, "You have prostate cancer."  We don't look at cancer through the lens of statistical algorithms.  It has struck each one of us individually and personally, not as just another statistic.
 
How can someone who has not had prostate cancer understand our strong, heartfelt opinions, no matter how "expert" they are.  I consider myself lucky that my cancer was found at a very early stage. Many men are not so fortunate.  They are true heroes to me.
 
Tim
 
P.S.  Occasionally, on public prostate cancer forums like this, people post who have not had prostate cancer and they are sharing theory only.  Personal experience with prostate cancer is a whole different story.
 
'How can someone who is warm understand someone who is cold'
Aleksandr Solzhenitsyn
 
 


PSA quadrupled in 1 yr (0.6 to 2.5)  
DRE negative  1 of 12 biopsies positive (< 5%) 
Open surgery June 2006 at age 57
Organ-confined to one small area, Gleason 5   
PSA's undetectable  < 0.1  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/24/2009 8:03 AM (GMT -6)   
Tim, I agree whole heartedly with the heart of your post. I started PSA testing at age 50, just because my GP said so, and my nurse wife said it was a good idea. I don't think I had ever thought about having a prostate, let alone getting cancer in mine.

And yes, I think some of the expert professional level people that debate treatments vs. overtreatment, testing vs. over testing, etc, are just talking textbook debate.

They surely didn't have PC themselves, or have a close blood relative or friend with it, or even had a glimpse of the day to day feelings of living with the Beast.

They sure haven't visited a hospice room where a brave advanced brother has ran out of all options and is waiting to join the next world.

If they had, then they would have some compassion, empathy, and basic human understanding of our cancer.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 10/24/2009 9:13 AM (GMT -6)   
I to am with you Tim. As part of my personal mission I go visit the sick and shut in and I always took special interest in people with cancer especially those dying. Once I got diagnosed it truly opened my eyes to a world I thought I understood but had no idea. I would say that most theorist mean well and have our best interest at heart or so they think, but until you hear those words "you have cancer" it is hard to wear the shoes of the person that does.
Now when I visit I see life through a different set of lenses and for once I feel like my vision is clear.

peace to you my friend
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


Mbshine
Regular Member


Date Joined Aug 2008
Total Posts : 67
   Posted 10/24/2009 6:23 PM (GMT -6)   
ACTUALLY the algorithms are kn own and published b NSKCC dr Scardino's book and he lists the direct weblinks so readers can check the latest data.....just my opinion....repeat my opinion only...am astounded as you are but probably for opposite reasons...after reading the stats for anyone with DX under age 60 or maybe even 70 I wondered why anyone capable of proactive treatment including and es[ecially surgery would still in this day consider watchful waiting.


best continued wishes

mbshines
AGE 62
DX 7/08
psa HAD GONE FROM 1.7 TO 4.3 IN THREE YEARS...DIGITAL AND ULTRA SOUND EXAM SHOWED NO ENLARGEMENT.
BIOPSY SHOWED 2 OF 12 CORES POSITIVE.
TWO TUMORS SHOWED GLEASON 4+3 AND 3+4
NO INDICATION OF ESCAPE FROM CAPSULE OR METASTASIS
STARTED CONSULTATIONS AT SLOAN KETTERING 8/09
DR GUILLONNEAU SAID NO SURGERY UNLESS MASSIVE WEIGHT LOSS.
AT DX 333 LBS, SLEEP APNEA, AND HIGH BP
BARIATRIC SURGERY RECOMMENDED.
LAP BAND SURGERY IN EL PASO, TX 1/23/09
10/1/09 276 LBS, TRIGLYC AND CHOL NORMAL, NO SIGNS OF SLEEP APNEA, ONE BP RX REMOVED AND OTHERS CUT DOSAGE IN HALF;

STARTED QUARTERLY ZOLODEX BY TAOS,NM UROLOGIST, WHO TRAINED AT MSKCC, INJECTIONS AND CASODEX 50MG DAILY 9/08

davinci done 10/19/09
Jackson pratt drain removed surgery plus 1 day.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 10/24/2009 6:56 PM (GMT -6)   
MBshine,
The answere is pretty easy, they don't want to experience the side affects from surgery or radiation.
If you look at all the stats on AS or WW they are well in the patients favor. In fact most G6 tumors never progress and the 25% that do are treated with the same cure rate as if they would have been treated immediately. The only risk is that an agressive tumor is missed on the initial biopsy and if you have a color doppler you can catch 95% of these. The real question is why would anyone with a G6 low core get treated before he knew that his cancer was progressing.
If I had this option I would have taken it immediately. The problem is that most doctors and most patients think all cancers are dangerous and have to be removed immediately. That's why most estimates are that over 1,000,000 have been over treated for something that would have never harmed them. The only thing that is going to prevent this is education.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 10/24/2009 7:28 PM (GMT -6)   

Dear Tim G

 

 

Such a great statement

 

Mika


age at dx 54 now 57
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
ED is getting better
the shots work great, still can't give them to myself
two years of zero's

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