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Posted 5/13/2007 2:36 AM (GMT 0)

Newly diagnosed with prostate cancer. Considering treatment options. I am in my late 60s. Would appreciate any comments on External Beam Radiation or Targeted CryoAblation. Additional info...age 69. Biopsy 5/3/07, Stage T2, PSA 5.8, Gleason 7.  One core in 12 checked positive.  Health generally good.

Post Edited (louw321) : 5/13/2007 2:36:29 PM (GMT-6)

Posted 5/13/2007 5:13 AM (GMT 0)
Louw:

Would be helpful if we had all of your stats - ( PSA, Gleason, Stage) if you want to give them.

I had proton therapy at Loma Linda - noninvasive procedure - had 38 treatments - no problems during treatments - will be 6yr in June and I have had no side effects - current PSA 0.17.

There are several good threads on this forum regarding radiation - mine, PCDave, Jetguy to mention a few.  Will bump Bluebirds "Helpful Hints" to the top for you.

Good luck in your search for a treatment that suits YOU.

Dutch

Posted 5/13/2007 12:26 PM (GMT 0)

louw, I finished my external beam ratiation therapy on March 23rd.  To date I have no side effects.  None.  Like Dutch, pcdave had proton beam therapy.  Mine was x-ray therapy.  I had image guided intensity modulated radiation therapy.  IGRT.  I suggest that you Google IMRT and IGRT.  IMRT will yield more results as IGRT is a recent development. 

I will bump Trey's and Dave's and my treatment reports to the top for you.  Dutch has already done the same with Bluebird's thread which is probably the most important thing you can read.

Regards,

Bill

Posted 5/13/2007 4:37 PM (GMT 0)

Like PCDave and Dutch I have had Proton Beam Therapy.  External Xray treatments have much improved and will continue to evolve, but Protons Beams do not penatrate all the way through the body and there is no burning at the entrance point. I had a 4" Tan on each hip and nothing else. PCDave gives a great account of his Proton Beam Travels which is very accurate as to the whole proceedure. Other info at Protonbob website.

Good Luck with whatever you decide.

Ken

Posted 5/13/2007 4:40 PM (GMT 0)
Louw


I don't want to repeat the good advice above (thanks Jetguy/Bill for directing Louw to my proton radiaton therapy thread). You are at a good age to seriously consider radiation therapy, but for us to give you more definitive advice we need your statistics (see my footnote below for an example)! Good Luck!



Dave
Posted 5/13/2007 6:30 PM (GMT 0)
Dear louw,
Welcome to the Prostate Forum. I am Kitt and you will find a wealth of information from our members. Each member shares their own experience but I agree you need to gather all the information you can so you can make an informed consent re your choice of treatment.
Again welcome.
Posted 5/14/2007 3:21 PM (GMT 0)
Thanks for your response.  At your suggestion I have added additional information about my PC status.  Also, I would like to add more info.  My urologist, who diagnosed my PC, has stated that I am a good candidate for any of three treatments [surgery, radiation or cryo].  He made an app[ointment for me to visit a cryo specialist, which is scheduled for June 12, 2007.  At no time did he mention proton treatments.  During the past few days, I have done a lot of research on the proton treatment.  I am leaning toward contacting MD Anderson and get the ball rolling.  In your opinion, should I do more research, listen to the cryo specialist, etc.  What do you think?
Posted 5/14/2007 4:50 PM (GMT 0)
Lou W.

Listen to the Specialist but remember that the specialist will have a specialist's perspective. 

If you can afford Proton Beam at Loma Linda or M.D. Anderson, I would definitely look into it.  Their specialists will likely tell you more about this promising procedure than anyone else.  Still, don't just jump at this because it is new.  Evaluate your options.

Only you can make an informed decision that involves everything about you, your family, your overall health, the complications of your fight, how far you can or want to travel, and so much more.

I would examine each of the (4?) alternatives you are considering with a consultation from the best specialist in that field practically available!  Then make a decision.  Pray about it for a day or two.  (To me, a "7" says don't wait around too long - make a decision!) Then get a second opinion from another source (Johns Hopkins, Cancer Centers, etc.).

In God's Love,

CCedar

Posted 5/14/2007 8:42 PM (GMT 0)

Just a clarification to CedarChoppers post - proton is one of the newer treatments available, but it is not "New".  Loma Linda has a 15 yr study.

Cryo probably has a much smaller data base to study as very few men have had this procedure as yet. 

Gather all the info you can on all modalities and good luck.

Dutch

Posted 5/14/2007 9:42 PM (GMT 0)
Hey Dutch, you beat me to it. Yep, not new. 11,000 patients and growing fast. And that's just Loma Linda.


Posted 5/15/2007 5:15 PM (GMT 0)
Hi Lou...I was diagnosed in Jan. Completed 42 IMRT treatments on April 20, 2007. I was very pleased with the treatment I chose. I'm 53 and had a PSA of 7.2, Gleason score of 6 and stage T1c. Very few side effects from the treatments..almost a month later feeling fine. I'll be happy to answer any questions you may have about this choice of treatments. Take care, Trey
Posted 5/15/2007 8:56 PM (GMT 0)
Hi Louw again!

I was told that I was a candidate for surgery and radiation (including seed implants). I don't know how popular "Cyro" is, but I would advise you to do a lot of research before selecting that option. We are about the same age with PCa statistics which are pretty close. In making your final decision you will have to weigh life style issues versus the potential side effects from each treatment. For me, at my age, proton therapy made the most sense because it was projected to give me an equal chance for a cure compared to other threatments and the potential for fewer side effects both long-term and short-term compared to all other treatments. I also suggest that you read the experiences of men who have opted for the each of the various PCa treatment options on www.yana.com. Best of luck in your final decision. Keep us up to date!

Dave
Posted 5/17/2007 12:23 AM (GMT 0)
Hi ~   Louw321 ,       A    “Special”   Warm Welcome   to   You!        We know ~ we can “all” make “Your Journey” smoother just by being here for you!   This is truly a great forum!!! ~ You have joined!  You are now part our forum family ~ a group of wonderful individuals who are so willing to share...   It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!   Keep posting.... OKAY!!     KNOWLEDGE     IS     POWER   ...   and   POWER conquers   fear   YOU MAKE THE DECISIONS… YOU HAVE OPTIONS… ~ and ~ Your decision will be the right decision for you!!!   J   We invite you to visit our personal thread:   Click Here:   “Our Journey” ~ Sharing is Caring     Our thoughts and prayers will be with you as you continue to move forward with your decision.   In Friendship ~ Lee & Buddy   “God Bless You” It's a little prayer   ~   "God Bless You" ...but it means so much each day, It means may angels guard you and guide you on your   way.   (Direct Links ~ just clicks on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)
Posted 5/23/2007 2:31 PM (GMT 0)
After reading Bob Marckini's book 'You can beat prostate cancer', I have decided to go with proton therapy. I submitted my self referral to M D Anderson 5/22/07.
Posted 5/23/2007 2:42 PM (GMT 0)
Dear Lou,
I am glad you made your choice after researching all the treatment optons.
I wish you well.
Kitt
Posted 5/23/2007 3:04 PM (GMT 0)
Hi Louw

Congratulations on your decision! I am sure that you put a lot of thought into it as I did. Our age, stats and stage of PCa are very similar. There is an excellent chance that you will do very well with Proton Therapy. I am five weeks past treatment and feel pretty close to my old self before treatment. I have corresponded with Bob Marckini from time to time via e-mail and have also met him in person. He is a great guy and very dedicated to helping PCa patients--he spends many hours each day in doing so via e-mail and phone calls. What I liked about his book is that he nicely covered all of the treatment options in a very unbiased way, in my opinion, notwithstanding that he is an advocate of Proton Therapy. Unfortunately his book had not been published at the time I had to make my treatment decision. It is a book that every PCa patient should read to help them make their treatment decision no matter what that decision ultimately is. New Proton Centers are opening up all over the US now, so I think that you will see more PCa patients opting for Proton Therapy in the future if they conclude that this form of treatment seems right for them. It may not be for every PCa patient, but it is worthwhile being educated about Proton Therapy. Best of luck to you in getting into MD Anderson to start your treatments.

Dave
Posted 5/23/2007 3:09 PM (GMT 0)
Good Luck with your decision. I should have recommended that book. I've heard that Dr Markini does a great job it's explanation of the various option. I plan to read it even though I've already had my Proton Treatment.

Posted 5/23/2007 9:23 PM (GMT 0)

Lou,

Great job researching your options, making a choice, and choosing M.D. Anderson.

I used M.D. anderson for my second opinion and found them top notch, and fascinating!

The entire concept of Proton Beam is appealing to me.  (Protons are the only atomic particles that don't (apparently) decay.)  A beam of protons is not "radioactive," per se.

So, in both radi0-active bandwith and particle width, the proton beam is one of (if not the) narrowest beam "blades" available.  And therefore one of the most accurate.

See John 1:1-5...  Holding you in visions of pefect health.

CCedar

Posted 5/23/2007 10:06 PM (GMT 0)

Cedar Chopper,

You're correct, the beam is only about the size of a pencil. They have to force it to be larger as it comes out of the pipe and then it goes through a metal shield which contains it to slightly larger than your prostate. Laymans explanation:). Where are you in the Hill Country? Dust returned from a visit to Kerrville.

Ken

Posted 5/24/2007 9:48 AM (GMT 0)

Ken,

I haven't told anyone at work about the nature of my surgery, so I won't be exactly forthcoming about my whereabouts in this forum. :-)    Anonymity allows more frank discussions concerning E.D., opinions about physicians & medical facilities, etc.

I didn't tell very many people about my cancer.  The necessity to explain the function of the prostate to my countless friends and associates at work, church, and school that would show normal concern about my fight against cancer - that endless conversation is a huge hurdle to my personal optimism about my health.  I see myself healthy and only discuss this fight here in this forum and with my physicain, family, and twelve people at church on my prayer team.  I feel disclosure must have a purpose.

I will give some information concerning my location:  I live and work near the habitat of the Golden Cheeked Warbler.  These birds build their nests only in Oak Trees - only out of Cedar (Texas Juniper) bark.  My surgery was done in Austin at North Austin Medical Center by two surgeons that moved to Austin from Tulane after Katrina (Karnik & Shaw).  One of my sisters lives in Kerrville.  She and her husband retired there.  Their daughter is going to UT Pediatric Dental School in San Antonio this Fall.  Their son studies water quality in Grad School at Texas State University. My grandfather was born in a mud dugout on the Middle Concho River (West of San Angelo) in the 1800s......  Father was born a mile South of Onion Creek in the 1920s....  Mother was born just East of Waco in the 1930s.  Our family has Texas Hill Country dirt in our blood!

auf Wiedersehen / Tchuss,

CCedar

Posted 5/24/2007 3:53 PM (GMT 0)

Well, Cedar, Nice to know you.

I guess I'm lucky, as everyone in our little town knows about my Prostate Treatment and have been very supportive and all prayed for me.

I spread the word as there is so much misinformation concerning my treatment. That's my job tongue

Texas Hopspitality is 2nd to none.

Ken

Posted 6/2/2007 6:21 PM (GMT 0)

  Well I have a new problem! My Ins Co. Secure Horizons Direct, limits what they will pay for poton treatment of prostate cancer to what Medicare Allowable Charges are for conformal 3D PHOTON beam therapy treatment for prostate cancer. This reprersents appro. one third of the cost of poton treatment. If any of you have been faced with this problem and have a solution or any suggestions please advise.

Posted 6/2/2007 6:54 PM (GMT 0)

The Insurance Companies have been fighting this for 15 yrs. You may be able to fight this. Many have done so and won. I know Loma Linda has helped some patients in this regard, but you might need a lawyer. In my case medicare paid for about 80% and Blue Cross paid the remaining 20% which is ridiculous figuring how much a month I pay Blue Cross.

Good Luck with the fight. It will be worth it when you succeed. The plusses for me were No Incontinence, No Diapers and No ED.

Ken

Posted 6/6/2007 12:12 AM (GMT 0)

The Loma Linda support group has an insurance file that may be of some help.  Go to www.protonbob.com, click on "Contact Us" at the bottom of home page.  You can email Bob Marckini and he will send you that file.

Good luck.

Dutch

Posted 6/9/2007 11:29 PM (GMT 0)

Louw:

Question - with age 69, are you retired??  Have noticed on the member list for Loma Linda proton members, there are several who have Secure Horizons, but all appeared retired so would presume the Secure Horizons is supplemental insurance and Medicare paid first.

Hope you are making progress with insurance question.

Dutch

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