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Open RP vs RT + Hormones for high volume PCa

mrspjd
Posts: 694
Joined: Apr 2010

First, thank you to all the courageous men and women on this CSN PCa forum for sharing your stories and helping us newbies learn from your experience. My husband, PJD, was dx’d Feb 11, 2010. I’ve been following your entries since then and sharing them with him. We are dealing with this together as a team. Since his dx, we have both (individually and together) been doing & sharing research 24/7 to get our “PCa education,” talking with many docs (literally dozens of docs), taking add’l diagnostic tests, etc. to try to learn as much as possible as well as get a more accurate clinical staging (T2b or T3) in order to evaluate tx options so he can make the best informed tx decision with the best possible outcome of being cancer free.

PJD is 67 yrs young, active, an avid golfer & skier, taking no Rx meds, only vitamins/supplements, with attention to a healthy diet and lifestyle, and other than the PCa, is in excellent health. Here’s an overview:

>PSA: Dec 2008 - 1.9; Jan 2010 - 2.8; March 2010 - 2.26
>DRE: Jan 2010 - nodule found
>Biopsy: Feb 2010; 12 core - first path report: 6/6 cores positive on rt & 3/6 positive on left & PNI identified on rt; Gleason 6; Prostate Volume 36cc
>Biopsy 2nd opinion pathology report from Johns-Hopkins: 6/6 cores positive on rt with 4/6 @ 100%; 1 @ 70% & 1 @ 50% & PNI confirmed on rt; 3/6 on left positive with 2/6 @ 80% & 1 @ 5%, all discontinuously; Gleason downgraded to 3+4=7 (worse & higher risk); T3 intermediate/high risk
>Bone scan & Pelvic CT w/ contrast: both negative
>Color doppler ultrasound: likely ECE, and likely seminal vesicle involvement on right
>EMRI w/Spec: indication of ECE to rt SV

What we knew (after receiving the EMRI report): This is a high volume cancer with low PSA, with evidence indicating/confirming likely ECE (extra capsular extension), especially to the right seminal vesicle. Based on our research about treatments and side effects, etc, as well as from consults with many world class docs, we are considering either an open RP or IMRT/IGRT w/ hormones (Lupron & Casodex) as a first line primary tx. If open surgery is elected, there would be high probability that, even with the best experienced/skilled surgeon, the margins would not be clear and follow-up adjuvant RT would be necessary (a choice he would make in the context of a rising PSA post op). We are still exploring the RT options and which ones might be best, as PJD is leaning in that direction. We both agree that above all else, being cancer free with the least amount of tx side effects is the number one priority. We strongly believe that everything else can be worked out. While it is hoped that everyone desires to live a high quality of life, with or without a dx of cancer, quality of life is defined differently for each person according to priorities and beliefs that are a highly personal & individual choice.

PJD says he feels that he has taken care of his body but his body has let him down and he is somewhat disappointed (his words). That said, he is a very positive thinker & a hopeful optimist. On the other hand, I worry enough for both of us plus five strangers! One could say that I’ve perfected worry into an art form! Guess it's true that opposites attract.

We would like to hear different perspectives and also from those that may have had a similar decision dilemma with a high volume PCa, your thought processes and experiences. Thanks.

mrs pjd

lewvino's picture
lewvino
Posts: 1010
Joined: May 2009

mrs pjd and hubby.

Welcome to our forum. Can tell you two have been doing your homework! Getting the second opinion was very wise of you. Don't worry about the Gleason 3+4 7. My pre Gleason was 4+3 7 then after robotic and the lab looked in detail they downgraded to 3+4 7. Also on the seminal vesicle involvment....my Doc recommends taking them out any way...since he said they can act as tubes for the cancer getting elsewhere. I think your hubby will do great with his treatment (what ever he picks) and you two will have many happy years ahead of you. Having your support for him is tremendous.

I'm the worrier in our family and my wife is the optimist!

My Dad was treated for his prostate cancer back in 1997 (Proton therapy) and doing well today.

Keep us posted as we are all here to support each other and if he wants to chat I'm always welcome to talk to others either via email, phone or in person.

Larry (Age 55)
Davinci at Vanderbilt Aug. 2009
Gleason 3+4 7
Using no pads
Success with Levitra 20mg
PSA 0 so far with a positive margin.

bdhilton
Posts: 795
Joined: Jan 2010

Mrspjd… Your journey has just stated and I wish you the best in the decision making process. Whatever you ultimately choose make sure the one who is treating your husband is experienced, experienced, experience with great great great stats…. I found lots of “snake oil” salesmen in the medical community in the beginning and finally was able to see what was right for me and the same will happen with you guys but in my opinion it is your husband decision and should be the one making it and researching it…

My pre surgery stats were: T2b, Gleason 4+3 (but most were 3+4 and 3+3) in a 15 sample biopsy. No signs of capsule penetration, etc…

Post surgery is different and for most (like 90%) your Gleason, staging etc is always higher after the surgery pathology…but with surgery you really know what you are fighting…So my post surgery is T3B, Gleason 4+3, positive right mid margin and right Seminal Vesicle involvement…etc…I have posted all of this a few times in details and will post again if you are interest…

Reading your posting I believe you think my surgeon did not remove all of my cancer. That is incorrect as he more than likely removed all of the caner. Seminal Vesicles are cut out along with the prostate plus I a section of lymph nodes removed with my procedure (all clear)… it is true that I have a positive margin (positive margins do not always means there is cancer left) on the right mid and my right Seminal Vesicle had cancer in it…However, if I elected to radiation I would have had one shot of hormones to shrink my prostate and then the radiation and I would have never know what my cancer really was…

My urologist told me that he has treated men with low level Gleason scores and the cancer total “contained” in the prostate and they have ended up getting an aggressive cancer and he has treated guys with high Gleason’s and escaped the prostate and never had cancer again…the point is take your best shot and hope for the best…this is a journey in which you have little control outside of your treatment choice…there is a Urologist that recently had his prostate removed and post here and he says that after the treatment there is just a lot of luck in what happens to you afterwards (just like my urologist told me)…I like to believe that our lives are already planned out instead of luck…The silver lining for me in this journey right now is the transition that I have gone through for the positive in life…

If you would like to talk let me know I do not know your husband age but if I was healthy and under 65 I would strongly look at the open procedure based on what I am reading your stating is etc you cancer is still “regional”…Because at least this gives you an option 2 with the radiation..

Best to you through the journey

mrspjd
Posts: 694
Joined: Apr 2010

Thank you for your supportive feedback. Larry, even though you say you are the "worrier," you sound like a very positive and caring person and I'm glad things are going well for you.

As for my posting thread, I hope I didn't imply criticism or judgment on anyone or their tx choices. I am not a doctor and that is not for me to say or know. I merely was stating what I have learned from our (mine and pjd's) research for pjd's PCa stats...that if we choose surgery as the first line tx path, even though we may have the best surgeon (stats & experience, experience, experience), there is no guarantee that there will be clear margins or that the surgery will be the only tx needed/required for pjd. We have learned how important it is for us (pjd and me) to learn as much as we can about pjd's PCa before making a tx decision. In pjd's case, since there is such a high likelihood of regional ECE, including extension into the rt seminal vesicle, the thinking/question is: why go through RP surgery with it's possible side effects/risks (hoping for the best but knowing positive margins would be likely), then add additional side effects/risks with RT + hormones a few months after surgery if the margins were indeed positive? Which is what we would do after surgery if that were the case. Why not just go for the RT + hormones as the first line tx defense? We've been advised that doing surgery solely to get a more accurate pathology staging of the PCa should not be the primary reason to do surgery...the primary reason should be to remove/cure the PCa, but if you know going in that it probably won't be entirely possible, why risk RP surgery side effects and then have to go for the RT+hormones months later and have those side effects/risks in addition? That is our decision dilemma.

As far as the comment that it should be pjd's decision and he should be doing the research...it will be his decision and he is doing the research. But so am I and we come together to share what we have learned from two fronts. Two heads are better than one when it comes to research and two sets of ears are better when it comes to doctor visits (although we are recording the dr visits with their permission). As I've said previously, ours is a team effort/process. After our lengthy discussions and sharing/weighing what we have learned, ultimately it is pjd's body and will be his decision for tx. I will support his decision 100%.

Bdhilton, I have read most of your postings and respect your research, logical thinking and choices. You sound like you have done your homework and are an informed/educated "consumer". Your stats, other than age (pjd is 67 yrs) which I know is an important criteria, sound very similar to pjd's. Also, my birthday is March 3, so your surgery date and story made an impression on us. You have made the right choices for you and sound happy and positive about those decisions. Thank you again for sharing your story and feedback.

Have read about many of you who are taking or have taken RT + hormones (with or without previous surgery) and would still like to hear from you if you would like to share your thinking process as it relates to our situation. Knowing what you know now, would you have done anything different? We know how important it is to remain positive with your choices, however, your 20/20 hindsight might help those new to the "club." Thanks.

Whether it be luck, pre-determined destiny, prayer, meditation, "the Force," G-d, or ?, may It continue to be with all of you and on your side in this war against the beast.

mrs pjd

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

At age 52 my psa was 24 and gleason 9. I was told to get my affairs in order and given a 50% chance to survive 2 years with treatment and a 2% chance to live 10 years.

I got my affairs in order and got all the stress out of my life (not easy to do but maybe the best treatment there is). Since the cancer had spread and the tumor was huge I was told to take a hormone shot to shrink the prostate and that was followed by 40 radiation treatments which started a month later.

Today is my 59th birthday and I have chosen to not take any further treatment since I was 52. My psa is well over 100 now and I have some pain but I pretty much can do whatever I like as far as working and playing. My quality of life is excellent. If I had to do it again the only thing I might do differently is to have tried to avoid the one hormone shot I took. Taking it makes having sex quite difficult, but at this point I don't even think about it anymore.

I may have been one of the lucky ones who survives quite a long time with that dx. but I believe my attitude and lack of stress have been a major positive factor in my success.

By the way, I have zero cancer in my prostate today as was confirmed by a biopsy 18 months ago. Too bad it went to my bones and is now incurable. I will refuse any more treatment as a matter of principal and after having watched my previous wife die of breast cancer after taking every available treatment and having a very poor quality of life the last 18 months or so.

bdhilton
Posts: 795
Joined: Jan 2010

2base…lots to be said about your attitude and decision. Yes, quality of life is or should be the number #1 priory for this or any life impacting situation in our life…thanks and many more years to you.

mrspjd
Posts: 694
Joined: Apr 2010

2ndbase,
I sincerely wish you a happy birthday and many, many, many more. You are a brave warrior!! Thanks for your feedback.
all the best,
mrs pjd

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