I've got my second opinions from Duke - have I made the right decision???

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mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 2/7/2009 10:54 AM (GMT -6)   
It was a long drive to Duke. I think I was hoping for some really promising clinical trial. I didn't find it. They just offered a round of chemo along with your choice of treatment. I didn't see that as an option and the doctors weren't really pushing it either. I was given the option of surgery but the urologist wasn't pushing it. I asked if he felt that it was the best choice for me in beating this back and he said the radiation/hormone choice was just as good. Living alone, the fear of surgery that won't make a difference in the outcome is frightening. It looks like I go with the hormone/radiation treatments. I'll be sure to get the Casodex to handle the Lupron "flare." We have seed implants and IMRT locally so I'll be getting close to state-of-the-art radiation treatment.

Wish me luck, say a few prayers, give me encouragement (most important) and advice, and ask me for a blue bracelet if you want one.

Love you all,

Mike
PSA - 9
Prostatic Adenocarcinoma
Left base: Gleason grade 4+4=8, involving 2 of 2 cores and 80% of tissue
Left mid: Gleason grade 4+5=9, involving 2 of 2 cores and 70% of tissue
Left apex: Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue with probable perineural invasion
Right base: Gleason grade 5+4=9, involving 2 of 2 cores and 50% of tissue
Right mid: Gleason grade 5+5=10, involving 2 of 2 cores and 80% of tissue with perineural invasion
Right apex: Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue
Bone scan - negative


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 2/7/2009 1:04 PM (GMT -6)   
Mikee,
With your stats I think you picked the best option. The PCRI.org web site has some good information on the side affects of ADT and what you can do to minimize them. Be sure you take the recommended supplements, especially calcium citrate and start a program of weight training immediately to prevent any bone or muscle loss.
Good luck on your treatment and keep us posted.
JohnT

I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I most likely didn't have PC, but to keep getting biopsies every year.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found wis indolant and statistacally insignificant, but PSA histor was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland, currently scheduled for Feb 14.

Changed diet and takiing supplements while I wait. The location of the tumor plus the high psa make surgery an unlikely option. I'm still evaluatiing all treatment options and will make a decision once I get the results of the Combidex scan.

JohnT


mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 2/7/2009 1:35 PM (GMT -6)   
Thanks, guys. All the best to you. Thanks for the advice, John. I've been "talking" weight training for a while, knowing what the therapy will do. I'll start today, along with more work on the stationary bike. I tend to do that during the third period of Caps games :-) Luckily, they are all televised. It's warmer today so maybe I'll take a hike.

I also changed my diet and added supplements when I was diagnosed. Over the past week, I've cut out the Vitamin E on a warning from my GP and cut out the selenium when I read that it "could" fuel the cancer. My GP said that he too had cut out selenium from his supplements. I miss the fast food and pizza and Chinese food, which I was reminded I could have at home. Maybe not the fried stuff :-)

Only good news in Holland!

Thanks, Ohio State, for the encouragement. Hoping for good second opinions for you!
PSA - 9
Prostatic Adenocarcinoma
Left base: Gleason grade 4+4=8, involving 2 of 2 cores and 80% of tissue
Left mid: Gleason grade 4+5=9, involving 2 of 2 cores and 70% of tissue
Left apex: Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue with probable perineural invasion
Right base: Gleason grade 5+4=9, involving 2 of 2 cores and 50% of tissue
Right mid: Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue with perineural invasion
Right apex: Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue
Bone scan - negative
MRI (pelvic) - negative


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 2/7/2009 2:49 PM (GMT -6)   

Hi Mikee,

I can empathize with going through this on your own. I completed the rad treatment and made all 45 trips to the facility on my own. I live alone with the nearest family 2000 miles away. If you are currently in good health (other that the obvious) the treatment will be tolerable. The hormone effect, at least for me, is primarily a nuisance particularly the hot flashes. The advice to keep up an exercise routine is good. I kept up my running and weights for all but one week of treatment. I did slow down on the run and went a little lighter on the weights. I strongly feel that this is what has kept the side effects from being intolerable.

One other comment regarding vitamins and supplements. I stopped all of them during my treatment. Radiation is an oxidative process so it seemed to me that taking anti oxidants would be counter productive. Be selective in the supplements if you chose to take them during your treatment.

Mike, best of luck to you.

Don


Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and 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
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.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
 
 
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/7/2009 3:23 PM (GMT -6)   
Mike you sounded great this morning. I think your plan is a good one. I would ask more questions about the Chemo. Would it be mild dosage? Is it part of a study? Chemo is a viable option when done on the front end as opposed to the later points. But if you chose to begin HT followed a month later by IMRT, you would be on a standard protocol. And also there is no harm in asking whether you could include Proscar with the HT, this is called ADT3, and it is promoted by many oncologists.

Also, start looking into plan B. Do you want to consider setting milestones for your next steps if necessary. I promote being proactive and I think it a good idea for you...

I loved hearing the positive tone in your voice today...It made my day.

Love and Peace,

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 15, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/7/2009 3:24 PM (GMT -6)   
Don,
Your nearest family is a keyboard away, brother...

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 15, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 2/7/2009 3:31 PM (GMT -6)   
Mikee, I was shocked at your post, really got to me, wish I were there to sit and talk with you. It is sobering, but it isn't hopeless. You got a good opinion from a great medical systems. Wish you weren't alone, do you have any family and/or close friends near you? Doesn't sound like surgery would clean all that out, so the other option suggested may be your best bet for now.

BTW, I got the bracelet. My wife, a nurse, hijacked it from me and wore it to work the rest of the week, raised some questions, because people are only use to the pink ones women wear for breast cancer.

Mike, if you want to talk longer at depth, feel free to use my email addy and we can take it from there. We are all here for you, brother, all the way.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 2/7/2009 3:50 PM (GMT -6)   
Mikee and Don...I second Tony and David. You are only a keyboard away from people who understand and will listen.... Good luck to you both...Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 2/7/2009 4:06 PM (GMT -6)   
Hey Mike thanks for the post, and the bracelet. I have to agree with everyone your family is here. Thanks for sharing some emails with me and thanks for being a friend.
The opinion I think is a good one. Please continue to share your feelings and emotions with us.

I love you brother

Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes 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 .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/7/2009 7:44 PM (GMT -6)   
Mikee-I posted to you a bit for good reasons, as you and I have very similar stats (comparable), you are in a higher risk group as was I and that is the way it is. I hope that you actually listened to some of what I said prior as it was meant for you and others that are in similar parameters. Sounds reasonable to do ADT1-3 + radiations (see Bolla study abstracts i.e. patients did better than radiation alone). You should tell your doc you endorse the Bolla concept and maybe you should do the ADT3 combo for 4-6 months prior to starting radiations (as per Bolla patients..whom walked this walk way before you or I). Radiation can do some beyond the gland, which in your/my case is almost like doing salvage radiation up front (which is what we need with those stats), the ADT3 is their to hopefully mop up other PCa cells. So if you go with this concept it might be the best protocol in your situation, there are others that could also do well. Bolla is known and used by many radiation and onco-docs as a reasonable treatment and some patients have done well on it.
This is basically the method I kind of followed so I am your witness with those kinds of stats you can survive PCa, perhaps longer than some of the nay sayers may have predicted, you may even become considered cured, who knows.

Dx-2002 (total urinary blockage) bPsa 46.6 12/12 biop. all pos. 80-90%, Gleasons 7,8,9's equally on both sides, perinureal invasion on a couple of cores, ct and bone scans showed clear.
ADT3(5 months+-)+ radiations (Neutron/Photon)+ADT1-3..off cycle...Des 1-mg...off all drugs... 2 yrs(off)...just resumed Des 1-mg...psa dropped back to .36 currently

Maybe this gives you some comfort and encouragement or for others with risky stats, if not thats ok too.
 


mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 2/7/2009 7:55 PM (GMT -6)   
Bob, as always thanks. You are an inspiration to all of us high high-risk guys. You are doing it and will continue in good health, God willing. I will definitely ask about ADT3 as opposed to Lupron alone. Comfort? Yes. Encouragement? Always. Thanks.
PSA - 9
Prostatic Adenocarcinoma
Left base: Gleason grade 4+4=8, involving 2 of 2 cores and 80% of tissue
Left mid: Gleason grade 4+5=9, involving 2 of 2 cores and 70% of tissue
Left apex: Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue with probable perineural invasion
Right base: Gleason grade 5+4=9, involving 2 of 2 cores and 50% of tissue
Right mid: Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue with perineural invasion
Right apex: Gleason grade 5+4=9, involving 2 of 2 cores and 80% of tissue
Bone scan - negative
MRI (pelvic) - negative


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/8/2009 6:34 AM (GMT -6)   
Thanks Mike and may you go back to your calling and direct that grandson with the guidiance and talents you were given to help him in world that is far from perfection. That is something you intend to do and now will be able to do and make a big difference in his life and thus a big difference in your own.

Peace be with you

Bolla studies info:   www.pcaw.com/info_articles/articles/earlier.asp

www.ncbi.nlm.nih.gov/pubmed12126818

 

Post Edited (zufus) : 2/8/2009 4:44:40 AM (GMT-7)

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