The power of this site – a thank you note.

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same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 6/19/2007 5:28 PM (GMT -7)   

     I had my biopsy on June 4, 07 and fortunately for me found this site three months earlier.

 

     Since that date, my uro gave a book by Dr. Patrick Walsh to read, and many of the posters to this site have provided me with their knowledge, experience and opinions.  This humble Engineer realizes that this site is hands down the best guidance a person could ask for in going this pc path for the first time, as I am.  Why?  First off, the book was written in 2001.  How many things in this age of rapidly changing technology are state-of-the-art for seven years?  Those of you who were kind and “Brave” enough to post to my previous threads here helped point me in a direction that makes sense for 2007.

 

     This afternoon, I met with my uro for the follow-up after my biopsy.  He did not come across as forthright which under most situations would have left me in a real quandary.  Here is my situation: I had 10% of one in twelve biopsy samples show cancer.  My Gleason is 4+4.  The combination is that I am at the early stages of a very aggressive cancer.  Six months from now is too long to wait, and it should be purged now.  He recommended one of two choices: DaVinci surgery (which is his specialty) or traditional radiation.  He had his staff schedule me to talk with the associate in his group that does radiation.

 

     I asked him about Proton radiation, and he said it is unproven.  A few days earlier, my son gave me an excellent article.  It had two messages:

When detected early enough, nobody dies of Prostate cancer

The doctor that you see for pc will consistently recommend his specialty as the

best course of action for you.

 

     This site has guided me to a totally different method, and I would have never found on my own or in any five year old book – Proton radiation.  That is where I hope to go for treatment; there may be things happen that prevent me from doing it – like cost, we’ll see.  I will post here to let you know whether I can complete this with the Proton radiation, as I currently intend to.

 

     This site does not have a specialty, or anyone who would post a false position without being greatly challenged.  That is the power of this site from which I have greatly benefited and offer those of you who post my deep-felt thanks.

 


Walt


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 6/19/2007 5:42 PM (GMT -7)   
Walt at least your Uro acknowledges that Protons exist. Some won't even do that. As far as being unproven, that is a bunch of BS. Loma Linda now has patients who were treated 15 years ago and are alive and healthy today. There is plenty of hard data to show that Protons are no worse than the best surgical or radiation (photon) procedure and in some cases actually better when delivered as the centers around the country do. GI and GU morbidity has been shown to be much less in several studies recently published in the US.

Why would universities spend upwards of $200 million dollars to build a treatment facility for something as prevalent as PCa when they could spend in the low millions to build a photon center that does just as well. It is because quality of life after treatment is just as important as potential quantity. I think some doctors are afraid that in the long run Protons may seriously impact their practice.

John

54 years old

PSA 5.6 on 3/20/07

DRE: Negative

Biopsy on 4/20/07 

Results 4/25/07:

3 out of 12 cores positive, 2 on the right lobe with 5% adenocarcinoma Gleason 3+3, 1 on the left lobe 10% adenocarcinoma Gleason 3+4, overall Gleason graded 7 Cancer T1C. 2nd Pathology opinion concurs.

No scans recommended as seminal vesicle and lymph involvement is shown on nomograph as less than 1-2%. All physicians have agreed with this.

Dr. recommended Da Vinci Laproscopic RP, asked for 2nd opinion. Seattle Cancer Care recommended same. Asked for Radiation referral. Recommended IMRT. Scheduled Surgery for July 9th, 2007. Had 2nd thoughts about surgery and IMRT due to potential side effects. After web research discovered Proton Beam Therapy and called Loma Linda. Now scheduled for final consult with Dr. Luu on 7/5/07, our 27th anniversary.


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 6/19/2007 6:08 PM (GMT -7)   
Dear Walt

I agree 100% (if not more!) with what John said above. After I was diagnosed with PCa, my primary care physician who I respect greatly, didn't steer me towards surgery, but indicated that I should consider photon or x-ray radiation treatment at a major cancer hospital nearby. He didn't seem to know much about proton radiation and somewhat dismissed it. The fact that he had no problem steering me toward radiation instead of surgery only gave me more impetus to pursue proton radiation. After I made my decision on proton radiation, I sent him an e-mail telling him some of the key facts about the history and success of proton radiation and why I felt it was the best treatment solution for me.
I met with him soon thereafter and he gave me a "thumbs up" on my treatment selection! I find it very annoying that more doctors don't know too much about proton radiation therapy, so we have to teach them! I get incensed when any doctor says that proton radiation therapy is unproven. It shows a lack of knowledge by the doctor who is just "shooting from the hip". The fact that Medicare has approved proton radiation therapy as a reimburseable cost (and it is the most expensive PCa treatment there is today) is proof enough for me. The Loma Linda statistics speak for themselves along with the testimony of a countless number of PCa patients who have been successfully treated with proton therapy. Obviously, there are some failures, but that it true of any kind of PCa treatment today. There is no guarantee that any treatment is going to eradicate our cancer. We have to weigh the pros and cons of each treatment and then select the one that we feel is best for us.

Considering that you have Gleason score of 8 (4 + 4), I strongly suggested that you get a 2nd opinion on your biopsy. Jonathan Epstein's group at John Hopkins is often mentioned as an excellent choice for a 2nd opinion. I ended up getting a 2nd and 3rd opinion (somewhat by default) from two major cancer hospitals. The 3rd opinion downgraded my Gleason 7 (3+4) to a Gleason 6 (3 + 3). If you are seriously considering proton therapy, you may have to contact more than one proton center to see if they will accept you with a Gleason score of 8. You did not mention your PSA reading which is also an important decision making consideration. Good Luck! Let us know what happens.

Dave
68, 29-core biopsy 9/27/06, PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area],  Gleason 6 [less than 5% in two other areas], negative DRE, bone scan and Endorectal MRI. Completed 39 Proton radiation treatments 2/22/07-4/18/07.
First PSA test to be taken 7/07.

Post Edited (pcdave) : 6/19/2007 7:17:06 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/19/2007 8:00 PM (GMT -7)   

Hi ~ Walt,

Thank you for reminding us all ~ that we do make a difference…..  Touching one life is touching a whole family!!  Pulling one thing from “Our Journey” ~ that allows someone else’s journey to be a little less rocky… is the gift we give.  I hope somewhere along your path… we personally touch you! 

Heartfelt thanks for this special message…  In Friendship ~ Lee & Buddy


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 6/19/2007 8:26 PM (GMT -7)   
Thanks Bluebird, Dave and John.

My PSA in November was 6.9 and three months ago down to 6.2. My uro only wanted to note the 6.9 reading because it was the highest. Highest versus most recent baffles this Engineer???

As a result of this forum, I did ask for and received a second opinion on my biopsy slides from Dr. Epstein. I was told that he supported the original readings. Maybe I should ask to read these myself? Maybe I should not be so paranoid?

Your comments about your family doctor not being familiar with Proton radiation, and my having already received Dr. Epstein's second opinion really supports what I said about the value of this site. You people are the real cumulative state-of-the-art knowledge base. You are way ahead of any dated book. You go a book one better - that document is one person's perspective, bias and experience; here we have the benefit of many.
Walt


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 6/19/2007 9:26 PM (GMT -7)   

Walt:

It is obvious from this thread that men are just going to have to become more proactive in their health care.  Also proton therapy is going to become more accepted as more facilities are built and come on line.

As to Dave's observation about the Gleason 8 - Loma Linda has taken many men with a Gleason 8, but in many of these cases they receive proton first and then finish with photon.

Keep us posted.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 6/19/2007 9:43 PM (GMT -7)   
Thanks Dutch.

Pls excuse my ignorance - what is a Photon?
Walt


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 6/19/2007 10:27 PM (GMT -7)   
Walt,
 
Photons are regular x-rays. Photons are part of the light spectrum. They have no mass, but like light can exert pressure on a physical object. Their energy allows them to pass through that object while giving up part of that energy.
 
Protons unlike photons have mass, over 2800 times the mass of the electrons that form the nucleus of an atom. Protons are desired because unlike photons they do not pass through the tissue they treat and in stopping generate what is called a Bragg Peak, basically the moment in which they release all the stored energy they have. Proton therapy typically uses hydrogen atoms to generate Protons.

54 years old

PSA 5.6 on 3/20/07

DRE: Negative

Biopsy on 4/20/07 

Results 4/25/07:

3 out of 12 cores positive, 2 on the right lobe with 5% adenocarcinoma Gleason 3+3, 1 on the left lobe 10% adenocarcinoma Gleason 3+4, overall Gleason graded 7 Cancer T1C. 2nd Pathology opinion concurs.

No scans recommended as seminal vesicle and lymph involvement is shown on nomograph as less than 1-2%. All physicians have agreed with this.

Dr. recommended Da Vinci Laproscopic RP, asked for 2nd opinion. Seattle Cancer Care recommended same. Asked for Radiation referral. Recommended IMRT. Scheduled Surgery for July 9th, 2007. Had 2nd thoughts about surgery and IMRT due to potential side effects. After web research discovered Proton Beam Therapy and called Loma Linda. Now scheduled for final consult with Dr. Luu on 7/5/07, our 27th anniversary.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/27/2007 6:10 PM (GMT -7)   

Partial quote from 7-21-07  posting by Walt *Same_as_u

My plans changed drastically this week culminating with my phoning to get scheduled for

Robotic Laparoscopic surgery on August 28.

                                                                                          

 

   :-)   Hi ~  Walt & Loved Ones,

 

Thinking of you and will send special thoughts your way.  Please ~ as time permits let us know how you're doing....

 

We hope you’ve pulled something from “Our Journey”… to help make yours a little smoother.  Even though Dr. Walsh’s book is from 2001 ~ the Foundation he set for us was very strong and the Knowledge he shares ~  gave us the Strength and the Power to overcome any shadows that we had going into our selected treatment. 

 

Knowledge is Power

A strong foundation to keep us strong and steady.

 

Keeping you close…

 

“Our hands will be on your shoulders”

special words borrowed from hamala

 

In Friendship,

 

~~*~~*~~*~~~)*&^%  Group Hug %^&*(~~~*~~*~~*~~

 

From the 3 of us...

Lee, Buddy, & Murphy


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)

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