Treatment Decsion Time

Factors that contributed to your treatment decsion
2
Doctors recommendation - 12.5%
2
Status of condition - 12.5%
1
Family obligations - 6.3%
0
Business obligations - 0.0%
11
Long term factors - 68.8%
0
Short term factors - 0.0%

 
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slm61
New Member


Date Joined Jul 2008
Total Posts : 6
   Posted 7/8/2008 9:28 AM (GMT -6)   
Has anyone out there had a struggle on the treatment decsion making process?
 
I have had a mixed bag of recommnedations in this process and here 3 weeks before a scheduled surgery I'm stuggling with it. I had a hernia repair in 93 before being DX with a blood clotting disorder that is has been under treatment for 10+yrs as normal. That along with the Bio going south on me 1/08, I currently have very good health other than the listed at 47 and feel like if I need to go with the S nows the time, plus the surgery looks like the best option with the current PC condition, but that doesn't do you any good if the procedure goes south with complications.
 
The IMRT doesn't look real bad, but it only estimates + results out to 7-10 yrs.
 
The DeVinch looks like a good way to go and I have a guy that has done 1000+, but its still a struggle given the past baggage. Any thoughts or feedback?
 
Thanks in advance.

Age 47
Physical 9/07 indicates oblong sphere in PS, PSA=3.5 doc recommends bio
Bio indicates 3+3=6 GS, T2a, PS=40.8cc, PC=65%, nodule in left apex
Bio went urosepsis (infected), w/PICline for 4 weeks
All CT/Bone scans (negitive)
4/08 PSA=4.9
+Blood clotting factors, under treatment=normal
1st Recommendation=IMRT
2nd Recommendation=DeVinchi
3rd Recommendation=Open Surgery
 
Secheduled DeVinchi for 7/31/08


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2285
   Posted 7/8/2008 10:19 AM (GMT -6)   

Welcome to the forum!  I hope you find what you are looking for and answers that help you in making a well-informed decision. 

All three of the well-established treatments--radioactive seed implants, surgery  and external-beam radiation--have excellent cure rates and long-term survival.  The newer treatments look very promising but don't yet have an established track record.  It's your choice, so do the research (this web site is an excellent place for information and support) and make your decision.

 

After extensive research, my wife and I decided on surgery for reasons that were important to us:  (1) pathological staging where the extent of the tumor and margins can be accurately determined  (2) The PSA goes immediately to zero  (3) The availability of options like salvage radiation if the cancer recurs  (4) Incontinence and impotence tend to get better with time  (5) Less likely to get diarrhea and painful urination
 

Age 59  PSA quadrupled in 1 yr (0.6 to 2.5) 
DRE neg  1 of 12 biopsies pos (< 5%) 
Open surgery June 2006 
Organ confined pT2a  Gleason 5   
Cancer-free for 2 years  PSA's undetectable 


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 7/8/2008 10:48 AM (GMT -6)   
sim61 - I think everybody struggles. With a Gleason 6, my impression is that you have some time and maybe some more treatment options than others with different situations. So please take your time and make the decision that is right for you.

I chose robotic surgery because I had 3 doctors (1 open surgeon and 2 robotics) tell me I was young and healthy and the "gold standard" was surgery. And they all said don't wait. Turns out I had a Gleason 9 and pT3a - which means it was right on the verge of breaking out of the prostate (so they tell me). So I am comfortable with my decision, because I am not sure other methods would have been as effective in my case.

However, as TimG mentions, incontinence can last for months, and sex is a big issue. There is a significant chance that you may never get it up again. I was mentally prepared to accept that. Surgery does not mean the end of your sex life, but it WILL be different.

Be sure you check out the proton radiation therapy. Depending on the situation, that might be a viable option for you.
Good luck!
kcragman
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Negative margins. Lymph nodes and associated glands all appear to be cancer free.


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 7/8/2008 10:52 AM (GMT -6)   
slm61-

TimG put it very well. The only thing I would add is that by 3 weeks minus 1 day you should be very sure of your choice. We've all gone through this. Make lists of pros and cons for each Tx and also include emotional factors, not just facts. By that I mean, e.g. how will you feel about wearing diapers or dealing with diarrhea, etc. You might not experience these side effects, but there is a good chance you will.

And when you've decided, be positive about it - there's no room for "I shoulda" afterward.

Good luck.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/8/2008 11:00 AM (GMT -6)   
  tongue    Hi ~slm61 and Loved Ones,

 

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alex1
Regular Member


Date Joined May 2008
Total Posts : 29
   Posted 7/8/2008 1:31 PM (GMT -6)   
Welcome. As you can see, our situations and numbers are nearly the same (even to the extent of having gotten an infection from the biopsy), except that I'm ten years older than you. For whatever its worth, I elected the surgery (robotic) for three reasons: (1) finality-it seemed to provide the greatest likelihood of being finished with PC forever;
(2) Age-the younger you are, the greater the chance of a recurrence with other alternatives and (3) the availability of an excellent surgeon and hospital nearby that is currently doing these at over 300 per year.
I had robotic on 2/21; was fully continent and overall felt pretty well within a month; am still struggling with ED but can see some slow progress. The greatest thing is a "0" PSA.
If you're not having doubts about your decision, you're not human, bot for what its worth it sounds to me like you're headed on the right path.
Biopsy 12/29/2007 with 1 of thirteen samples positive; estimated 5% involvement
3+3=6 Gleason
TR2C Stage
RRLP on 2/21/2008 with excellent prognosis (no evidence;margins and other tissue clear) on cancer clearance and sparing of both nerve bundles
Actual involvement 15%, one lobe only
Catheter out on 3/2/2008; continent by 3/31/2008
Undetectable PSA on 3/31/2008
Working on ED


BamaCoast
Regular Member


Date Joined Apr 2008
Total Posts : 39
   Posted 7/8/2008 6:26 PM (GMT -6)   
Sim61,
 
I went through the same process as you. I thought about pin point radiation, seed therapy and got 5 seperate opinions from 3 Urologists, my internist and an uncologist and all 5 recommended robotic surgery because of my age and good health. They recommended it because they have more data on the success rate of removing the prostate versus any other forms of treatment. I think it has worked very well for me. There is very little pain and the recovery time from the surgery is short. You do have side effects including incontience and ed but they will improve with time.
 
I don't know much about proton therapy but the people I know who have used this method are really pleased with the results. In the end I decided to get it out of my body and I don't regret making that decision. Good luck
BamaCoast - Kenny & Renae
from the Gulf Coast of Alabama
Age 51
Di Vinci Robotic Surgery March 5th, 2008
by Dr. Scott Tully
PSA 3.5  Gleason 3+4= 7
Confined to Prostate
1st PSA 6-20-08 .0 negative
Dry approximately 6-15-08
 
 


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/8/2008 6:37 PM (GMT -6)   
 Both my wife and I agreed that I needed to do whatever gave me the best chance at long term survival with the best quality of life.  Though family and business obligations are of paramount importance to me, I had a supportive family and work situation that afforded me the option to do whatever it was I needed to do, including going to Loma Linda for the length of Proton Therapy treatment if that was what I had opted for. 
 
Surgery, though not my desire, at the end of the road seemed to make the most sense.  I would have gone ANYWHERE in the country that afforded me the best outcome.  The fact that there was a premier surgeon here in Chicago at both Northwestern and Univ of Chicago meant I didn't have to travel.
 
We are fortunate to have good insurance that covered almost any option, so that played into it too.  I think financial consideration should be added to the list, as it seems many have to consider the impact on their financial stability as well.
 
42 yo. now
 
5/07 PSA 4.65 at routine physical
6/07 biopsy positive for cancer...Gleason 3+4...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision.  I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.  Thankful the father of the PSA test was right here in Chicago.
 
Post op pathology was Gleason 3+4 with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  
 
9/27/07 - Catheter removal...let the games begin...
 
12/07 - Threw out the pads.  I only had to use 1 pad per day for protection against minor drips. 
 
I started Trimix 8 weeks after surgery with success.
 
I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
 
 
 


Jim-N1BRP
Regular Member


Date Joined Jul 2006
Total Posts : 165
   Posted 7/11/2008 4:43 AM (GMT -6)   
I went with IGRT because of my wife's illness AKA Family needs.

Jim, 54,~Jim-N1BRP. My Journey
Diagnosed: 12Nov. '07, Age 54

Treatment Started : 31 Jan 08

Completed 31 Mar 08

42 treatments 1.8 Gy M-F for a total of 75.6 Gy.

Prostate Biopsy: 18Sept '06, - 10 sample all negative, Prostate size 36.3 cc

Prostate Biopsy : 12Nov '07, Biopsy - 14 sample 2 positive, one Gleason 6 at 5 %,
other Gleason 6 at 15%- Stage T1C -Prostate size 40.2 cc

Bone Scan: 12Dec '07, - Hot Spot on Brain
Family history: Father and two uncles  die from PCa

Other: GERD, 30% Carotid artery blockage, Kidney Cyst, Asthma

Meds, Hytrin, BusPIRone, Trazodone, Tramadol HCl, Omeprazole, Plavix, Albuterol, Multi Vitamin  Mens

PSA's                   fPSA

1.2    Oct  05

3.61  Jul    06    

2.6    Sept 06          19%  

2.6    Apr 07             3% Oh NO

Post Treatment PSA's

1.16 May 08

 


taiping
Regular Member


Date Joined Apr 2008
Total Posts : 62
   Posted 7/11/2008 7:50 AM (GMT -6)   
Hello Sim61,
 
One alternative strategy not in the mainstream camp . . .
 
Steve
 
Diagnosed: June 2007. Aged 61. PSA 19.6. DRE negative.
Biopsy: June 2007; 2 cores of 18 positive.
MRI and Bone Scan: Negative.
Pathology: 5% of 1 core, "Small focus" in another core +ve.
Gleason 3 + 3 = 6.
Clinical: PCa considered confined to prostate. Stage T1c.
Treatment: After considering RP and HD Brachy, decided on Intermittent Triple Androgen Blockade Therapy for 1-year, using ZOLADEX, CASODEX 150 mg/day, AVODART 0.5 mg/day. Start PSA 19.2 (July 2007).
Current Status: PSA 0.018 (June 2008) - PSA nadir.
---------------


slm61
New Member


Date Joined Jul 2008
Total Posts : 6
   Posted 7/11/2008 8:22 AM (GMT -6)   
Steve, what is your age and has there been any mentionable side effects from thsi type of treament?

Age 47
Physical 9/07 indicates oblong sphere in PS, PSA=3.5 doc recommends bio
Bio indicates 3+3=6 GS, T2a, PS=40.8cc, PC=65%, nodule in left apex
Bio went urosepsis (infected), w/PICline for 4 weeks
All CT/Bone scans (negitive)
4/08 PSA=4.9
+Blood clotting factors, under treatment=normal
1st Recommendation=IMRT
2nd Recommendation=DeVinchi
3rd Recommendation=Open Surgery
 
Secheduled DeVinchi for 7/31/08


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 7/11/2008 8:37 AM (GMT -6)   
I will only say good luck and here are 2 websites that I think give you info on vertually all treatments.
 
http://www.prostate-cancer.com/index.html = list each treatment except Proton
 
http://www.proton-therapy.org/ gives info and location of all 5
 
Again, you have come to a great site for support but only YOU can decide your treatment and regardless of what it is I support you 100 percent
 
Blessings
 
Richard aka smilingoldcoot
 
 
Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
Jan & Feb & Mar all tests clear
MD Anderson = No surgery and No Proton only Hormone and IMRT
Contacted with Loma Linda and UFPTI in FL
Started Treatment at the U of Florida Proton Therapy Institute in April 2008
May 2, 2008 LUPRON & Casodex
IMRT to started  5/27/2008 Will get 42 treatments 25 IMRT and then 17 Proton
Turn Stumbling Blocks into Steping Stones and Keep Smiling
Our Journey is on WWW.GLEASON10.COM
 


durantlion
New Member


Date Joined Jun 2008
Total Posts : 12
   Posted 7/11/2008 3:30 PM (GMT -6)   

slm61...

"STRUGGLE"...Yes, I knew about a dozen times a day what treatment and they were all different treatments...and at many 2:00 a.m.'s, I decided that I wasn't going to do anything, until I said that to my wife and she wasn't as open to me doing nothing as I was.  Read, study, talk to all that will listen, call folks that have been involved in this "struggle".  I've called people I didn't even know. This forum is a wealth of information and support, and you will find help at any hour of the day. Look at every option, evaluate your needs and after several weeks you will come to a decision.  Finally, I came to peace with the da Vinci surgery best for me and my family, scheduled for 8-7-08 in Mesa Banner Desert.

For me it was "status of condition" first and then "long term factors"

Good luck to you in your decision making...

durantlion     


Born Aug. 14, 1940; dx 6-3-08
Oct. '05 PSA 3.7; Free PSA 14.3
1st Bio July '06 - negative; PSA 5; DRE Negative
2nd Bio Mar '07 - negative; PSA 6.68; DRE Negative
Feb. '08 PSA 7
Mar. '08 PSA 10.8;  Free PSA 24.1
April '08 PSA 8.2; Free PSA 14.6
3rd Bio June 3'08, one core of 10 (LMid 20% cancer)other 9 cores negative
Stage T1c, Gleason 3+3=6; DRE Negative
Scheduled surgery, da Vinci, Aug. 7, '08
 


taiping
Regular Member


Date Joined Apr 2008
Total Posts : 62
   Posted 7/11/2008 8:33 PM (GMT -6)   
Sim61,
 
For your info, I am now 62 and have been on TAB for nearly 1-year, during which time my PSA has reduced from 19.2 to 0.018.
Unfortunately, nothing is a free ride and there are several possible side effects of TAB, the "Big 3" of which are (1) Loss of libido (effective castration), (2) ED, and (3) hot flashes.
There are also a number of other possible side effects such as weight gain, muscle loss, loss of bone density, depression, emotional stability, fatique, muzzy feeling, and others.
For myself, the main effects have been (1) and (2) above, plus a muzzy head and at one stage a loss of emotional stability. I have not been bothered by hot flashes, which I understand in some people can be quite debilitating.
However, the side effects are most probably reversible after stopping the hormone therapy, or can be treated with medication. Not so for the standard treatments.
There are also reports linking hormone therapy to an increase in metatices.
 
For the original ASCO abstract which caught my attention, please see . . .
 
 
Also, in my case, I considered the probability that the PCa had spread outside the prostate. MRI and bone scans are not sufficiently sensitive to detect this with any degree of certainty unless there's a good amount of cancer to detect. I prefer to consider the probability of the spread of cancer using the following link . . .
 
 
To me, there's not much point in doing a radical prostatectomy, brachy, or RT, if the cancer has already spread. Hormone therapy kills cancer cells wherever they are.
Hormone therapy is not a cure for PCa but a therapy to try to keep it under control, like diabetes or high blood pressure. Many men diagnosed with PCa would prefer to attempt a cure for the disease with the standard treatments, and I understand where they are coming from.
 
Wishing you all the best, whatever you decide to do.
Steve
 
 
Diagnosed: June 2007. Aged 61. PSA 19.6. DRE negative.
Biopsy: June 2007; 2 cores of 18 positive.
MRI and Bone Scan: Negative.
Pathology: 5% of 1 core, "Small focus" in another core +ve.
Gleason 3 + 3 = 6.
Clinical: PCa considered confined to prostate. Stage T1c.
Treatment: After considering RP and HD Brachy, decided on Intermittent Triple Androgen Blockade Therapy for 1-year, using ZOLADEX, CASODEX 150 mg/day, AVODART 0.5 mg/day. Start PSA 19.2 (July 2007).
Current Status: PSA 0.018 (June 2008) - PSA nadir.
---------------


slm61
New Member


Date Joined Jul 2008
Total Posts : 6
   Posted 7/16/2008 9:03 PM (GMT -6)   
Thank you very much all the great input and advice,  I don't mind if EVERYONE PRAYS!! HARD! It's high risk for me (Stan), the journey is about to start, no current symtoms. And like to say like Tony Snow said if I don't come back to the forum and update my signature by 8/08, well to say as Paul did to live is Christ and to die is gain. I'll hope to see you on the other side. John: 3. I'd also recommend praying for the Nano research folks out there it looks like it has promise for those with PC and all the many many others struggling with this foe of a longer life span.

God Bless


Age 47
Physical 9/07 indicates oblong sphere in PS, PSA=3.5 doc recommends bio
Bio indicates 3+3=6 GS, T2a, PS=40.8cc, PC=50%, nodule in left apex
Bio went urosepsis (infected), w/PICline for 4 weeks
All CT/Bone scans (negitive)
4/08 PSA=4.9
+Blood clotting factors, under treatment=normal
1st Recommendation=IMRT
2nd Recommendation=DeVinchi
3rd Recommendation=Open Surgery
 
Secheduled DeVinchi for 7/31/08


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/16/2008 9:57 PM (GMT -6)   
slm61,
 
read these posts again and i so felt the anxiety of that struggle for you.  my wife said that she asked the nurse in the OR prep room to come in and sedate me because she was afraid i wouldn't go through with it, because as i was lying waiting i was getting more anxious and saying i should be doing Proton Therapy.  today, i still wonder how things would be had i done Proton Therapy, which from my research seemed the most logical other choice vs. surgery.
 
my surgery had the desired outcome mostly.  i'm continent, though it's not "perfect".  i have ED issues which at 42 is a tougher thing to deal with.  and i still worry about recurrence though i had a very good post op pathology. 
 
at the end of the day, life is just different.  but it's life.  and for that i remain grateful.  i long for the day when there is a vaccine or cure for cancer.  i also hope it comes sooner than later, but also know that it will be painful to know if it comes in my lifetime that had it only come sooner, i might still have a quality of life that i had before cancer.
 
but then i look at my kids and i remind myself our how lucky i am to have found it when i did and to be facing the possibility of a total cure.  even with side effects, it would be a wonderful thing to regain confidence in my health.
 
i hope you find peace with your decision. 
 
42 yo. now
 
5/07 PSA 4.65 at routine physical
6/07 biopsy positive for cancer...Gleason 3+4...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision.  I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.  Thankful the father of the PSA test was right here in Chicago.
 
Post op pathology was Gleason 3+4 with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  
 
9/27/07 - Catheter removal...let the games begin...
 
12/07 - Threw out the pads.  I only had to use 1 pad per day for protection against minor drips. 
 
I started Trimix 8 weeks after surgery with success.
 
I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
 
 
 


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 7/17/2008 5:21 AM (GMT -6)   
sim, I hope that all is well with you and that you'll post an update soon. yes, this decision is a very difficult one but once it's made, move on and forget about it. God Bless you!! kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump
8/07 - 1 yr PSA <0.1
9/1/07 - achieved erection with Viagra - no pump!
3/08 - 18 mo PSA <0.1
switched to Levitra - works much better than Viagra & Cialis - fewer side affects

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