The power of this site – a thank you note.

     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.

 

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

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.

Thanks Dutch.

Pls excuse my ignorance - what is a Photon?

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