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  #11  
Old 08-09-2019, 04:59 PM
B-flat B-flat is offline
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I had prostrate cancer in 2007. My prostrate was very enlarged and I was not a candidate for certain treatments. Actually before they could treat my cancer problem I had to have a hormone shot to reduce the size of the prostrate. Although you are probably not in Massachusetts, I highly recommend Dr. Francis McGovern. I did lots of research and he was the surgeon I chose for the radical prostatectomy. AT Mass General the other surgeons call him “the surgeon’s surgeon”. I have been cancer free since 2007.

P.S. I read Dr. Peter Scardino's Prostate Book, Revised Edition: The Complete Guide to Overcoming Prostate Cancer, Prostatitis, and BPH. Peter Scardino is the Chair At Memorial Sloane Kettering Cancer Center in NY.
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Last edited by B-flat; 08-09-2019 at 05:17 PM.
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  #12  
Old 08-09-2019, 08:44 PM
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Nucky Nucky is offline
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I give everyone who posted a whole lot of credit for sharing their stories. Thank You.

Over a year ago my blood work for my PSA went from .4 to 5.9 in 8 months. The Doctor said take this heavy antibiotic for two weeks and then two weeks after that we'll take blood and see where we are at.

So after the month of waiting and concern, the reading was .5. The bad thing there was someone walking around who was thinking they are in the clear and may not be. Since that day anytime I have Blood Drawn, the label goes on in my presence and naturally I check to be sure the info on the label is correct.

This subject is important to me as my people in my family up north have not kept up with taking care of the early testing. I get tested twice a year now.
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  #13  
Old 08-10-2019, 05:54 AM
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l2ridehd l2ridehd is online now
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I was diagnosed with aggressive prostate cancer last year. Gleason 8 and PSA 8.5. I did extensive reading and research. I found the doctors here locally were focused on the cures that lined their pockets. My urologist was a surgeon so surgery was the only answer to my problem. I found a radiation oncologist and that was the only answer and it had to be the radiation machine owned by his practice which was photon radiation. An unbiased opinion was very difficult to find.

I read the book by Dr Patrick Walsh and 30 other books about the different types of prostate cancer treatment. I found out a lot of interesting things. Our daughter is a nurse practitioner and she got me access to every medicial paper published on prostate cancer. There are 100's and I read them all. Here is some stuff your doctor probably wont tell you.

Surgery. 30% of those that get their prostate removed (and this is very major surgery) end up doing radiation. And the side effects can be awful.

Photon radiation. (what is available locally) The collateral damage done by this type radiation is fairly extensive. A very high percentage of patients end up with incontinence, ED or both plus bowl and bladder problems.

After all my research I decided on Proton radiation. Very different than Photon radiation. There are only about 30 places in the country that have a cyclotron (cost for a cyclotron is in the 150 million range) that can offer this type treatment. And only about 5 of those that specialize in prostate cancer. Fortunately UF Health in Jacksonville has a cyclotron and is one of the top facilities in the world for treating prostate cancer. Loma Linda University in California, MD Anderson in Texas and Mass General are the others.

Side effects using proton radiation are significantly less than other types of prostate cancer treatment. I went to Jacksonville for 8 weeks for my treatment. My PSA has gone from 8.5 to <.01. I have zero side effects. No incontinence, no ED, no bowl or bladder issues. I call it my radiation vacation. I had to have 78 grays of radiation done with 39 treatments. Takes about 15 minutes for each session. The rest of the time I played golf, went to the beach, ate well, and enjoyed what Jacksonville and St Augustine have to offer. Deciding to go their for my treatment was the best medical decision I have ever made. You are treated like a guest there vs a patient. The doctors and staff are the best I have ever had anywhere.

If anyone wants to discuss this type of treatment more I will make myself available to you. PM me, send me a phone number, we can meet, however it will help you make the best decision for you.
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Last edited by l2ridehd; 08-10-2019 at 12:01 PM.
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  #14  
Old 08-10-2019, 06:08 AM
biker1 biker1 is online now
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If I am reading this correctly, you are asserting that your blood sample was mislabeled? A rapid rise in PSA can be triggered by infection or trauma. The standard protocol for a rapid rise in PSA appears to be a dose of antibiotics and then retesting. I believe it is more likely that you had an infection than your blood sample was mislabeled (unless they specifically told you that they suspected a mislabelling).

Quote:
Originally Posted by Nucky View Post
I give everyone who posted a whole lot of credit for sharing their stories. Thank You.

Over a year ago my blood work for my PSA went from .4 to 5.9 in 8 months. The Doctor said take this heavy antibiotic for two weeks and then two weeks after that we'll take blood and see where we are at.

So after the month of waiting and concern, the reading was .5. The bad thing there was someone walking around who was thinking they are in the clear and may not be. Since that day anytime I have Blood Drawn, the label goes on in my presence and naturally I check to be sure the info on the label is correct.

This subject is important to me as my people in my family up north have not kept up with taking care of the early testing. I get tested twice a year now.
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  #15  
Old 08-10-2019, 06:31 AM
roob1 roob1 is online now
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Robotic surgery performed by an experienced surgeon is far from very major surgery. You get about 4 very small incisions in the stomach area, one night in hospital and catheter for 10 days or so. It is generally done in under an hour.

Again, the operative word is "experienced"...find one who has done hundreds and hundreds. Side effects are also highly related to the experience of the surgeon (as well as other factors).


[QUOTE=l2ridehd;1671926]

Surgery. 30% of those that get their prostate removed (and this is very major surgery) end up doing radiation. And the side effects can be awful.
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  #16  
Old 08-10-2019, 07:14 AM
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Nucky Nucky is offline
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Quote:
Originally Posted by biker1 View Post
If I am reading this correctly, you are asserting that your blood sample was mislabeled? A rapid rise in PSA can be triggered by infection or trauma. The standard protocol for a rapid rise in PSA appears to be a dose of antibiotics and then retesting. I believe it is more likely that you had an infection than your blood sample was mislabeled (unless they specifically told you that they suspected a mislabelling).
Just going by what the Doctor said. He said not to get upset that over his years of being a Doctor he had seen the mislabeling many times. Nobody ever actually said they mislabeled. I did speak to the person in charge of The Facility that took my blood. I did it so they could try and find the other person who may have been mislabeled and think they are Ok but really still have a problem.

I read about infection and trauma also. I believe you're correct. I was guided by what the Doctor said.
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  #17  
Old 08-10-2019, 09:08 AM
tophcfa tophcfa is offline
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[QUOTE=roob1;1671938]Robotic surgery performed by an experienced surgeon is far from very major surgery. You get about 4 very small incisions in the stomach area, one night in hospital and catheter for 10 days or so. It is generally done in under an hour.

Again, the operative word is "experienced"...find one who has done hundreds and hundreds. Side effects are also highly related to the experience of the surgeon (as well as other factors).


Quote:
Originally Posted by l2ridehd View Post

Surgery. 30% of those that get their prostate removed (and this is very major surgery) end up doing radiation. And the side effects can be awful.
There are lots of opinions on the pros and cons of robotic vs open retro pubic radical prostatectomy surgery, and yes, the robitic surgery is less difficult on the patient with quicker recovery. However, there is no evidence that robitic surgery will yield better results. The patient is looking for "the trifecta" in terms of results. First, clean margins and complete cancer removal, second is continence control, and third is avoiding complete ED. Hospitals that invested heavily in robotic technology will push this meathod to get a return on their large investments. Also, most younger Doctors are only trained in robotic surgery.

All that said, what the robotic surgeons won't tell you is that without their hands actually doing the surgery, they can not feel the prostate and the tumor, and use that most important sense to help determine how much tissue to remove, giving the patient the best chance of clean margins. And with clean margins, no post operative radiation is needed.

I had the open surgery, and it is a major surgery, but in the grand scheme of life, a harder surgery and a few more weeks of recovery time was well worth it. Dr. McGovern is my hero, he gave me the trifecta : )
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  #18  
Old 08-10-2019, 10:23 AM
flyguy909 flyguy909 is offline
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Bob47 is absolutely right. I was diagnosed at 58, urologist pushed surgery but I opted for radiation called Cyberknife after doing my own research. Very impressed with the procedure and the outcome as I am cancer free after 8 years. Another big plus is all the plumbing works. Three of my friends have had surgery... 2 had major complications. But that's too small a sample to derive anything.

With Cyberknife, a urologist implants 3 tiny gold seeds into your prostate using same technique as a standard biopsy. These are used by the robotic radiation machine for precise targeting. The oncologist uses MRI's and CT scans to develop a program to shoot many radiation beams into your prostate but at the same time avoiding as much collateral damage as possible. I layed on a table with my butt in a custom fitted cushion so I couldn't shift position while a big robotic arm went all around me shooting individual focused beam radiation shots. I did this 3 days for about 45 minutes a day.. and that was it.

You'll get many different answers as there are several options. I am happy with the path I chose.

Last edited by flyguy909; 08-10-2019 at 10:41 AM.
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  #19  
Old 08-10-2019, 10:30 AM
tophcfa tophcfa is offline
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Quote:
Originally Posted by l2ridehd View Post
I was diagnosed with aggressive prostate cancer last year. Gleason 8 and PSA 8.5. I did extensive reading and research. I found the doctors here locally were focused on the cures that lined their pockets. My urologist was a surgeon so surgery was the only answer to my problem. I found a radiation oncologist and that was the only answer and it had to be the radiation machine owned by his practice which was photon radiation. An unbiased opinion was very difficult to find.

I read the book by Dr Patrick Walsh and 30 other books about the different types of prostate cancer treatment. I found out a lot of interesting things. Our daughter is a nurse practitioner and she got me access to every medicial paper published on prostate cancer. There are 100's and I read them all. Here is some stuff your doctor probably wont tell you.

Surgery. 30% of those that get their prostate removed (and this is very major surgery) end up doing radiation. And the side effects can be awful.

Photon radiation. (what is available locally) The collateral damage done by this type radiation is fairly extensive. A very high percentage of patients end up with incontinence, ED or both plus bowl and bladder problems.

After all my research I decided on Proton radiation. Very different than Photon radiation. There are only about 30 places in the country that have a cyclotron (cost for a cyclotron is in the 150 million range) that can offer this type treatment. And only about 5 of those that specialize in prostate cancer. Fortunately UF Health in Jacksonville has a cyclotron and is one of the top facilities in the world for treating prostate cancer. Lou Melinda University in California, MD Anderson in Texas and Mass General are the others.

Side effects using proton radiation are significantly less than other types of prostate cancer treatment. I went to Jacksonville for 8 weeks for my treatment. My PSA has gone from 8.5 to <.01. I have zero side effects. No incontinence, no ED, no bowl or bladder issues. I call it my radiation vacation. I had to have 78 grays of radiation done with 39 treatments. Takes about 15 minutes for each session. The rest of the time I played golf, went to the beach, ate well, and enjoyed what Jacksonville and St Augustine have to offer. Deciding to go their for my treatment was the best medical decision I have ever made. You are treated like a guest there vs a patient. The doctors and staff are the best I have ever had anywhere.

If anyone wants to discuss this type of treatment more I will make myself available to you. PM me, send me a phone number, we can meet, however it will help you make the best decision for you.
Thanks for the good information. Hopefully I will never need it, but if my PSA ever shows up as anything but undetectable, Proton radiation will be the next option for me.
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  #20  
Old 08-10-2019, 03:26 PM
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CFrance CFrance is offline
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Quote:
Originally Posted by flyguy909 View Post
Bob47 is absolutely right. I was diagnosed at 58, urologist pushed surgery but I opted for radiation called Cyberknife after doing my own research. Very impressed with the procedure and the outcome as I am cancer free after 8 years. Another big plus is all the plumbing works. Three of my friends have had surgery... 2 had major complications. But that's too small a sample to derive anything.

With Cyberknife, a urologist implants 3 tiny gold seeds into your prostate using same technique as a standard biopsy. These are used by the robotic radiation machine for precise targeting. The oncologist uses MRI's and CT scans to develop a program to shoot many radiation beams into your prostate but at the same time avoiding as much collateral damage as possible. I layed on a table with my butt in a custom fitted cushion so I couldn't shift position while a big robotic arm went all around me shooting individual focused beam radiation shots. I did this 3 days for about 45 minutes a day.. and that was it.

You'll get many different answers as there are several options. I am happy with the path I chose.
I am glad for your outcome. Where did you have your procedure done?
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