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General control line discussion => Open Forum => Topic started by: Rusty on November 22, 2017, 06:07:15 AM
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Rusty,
I am not a doctor so this is not medical advice just personal option. I think you should have the second results sent to your original doctor and lab for review. Even the top labs can make a mistake. My view of doctors is that they are just mechanic's working on a biological machine. They look at symptoms and data just like any mechanic. But data isn't always correct or is open to subjective judgement (like stunt judging) and may need a closer look. Get a hard copy of your test results from both labs and the comments from the doctors. Do some web searches on the data from several sources so you know what to question to ask (they hate an educated patient, but it's your body).
Here is the American Cancer Society web site to start with:
https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html
Keep the faith plan your next build, don't give in, enjoy the holidays and have a happy Thanksgiving.
Know we are with you in our thoughts and prayers.
Best, DennisT
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Rusty:
From what I could find about the Gleason number, it is a way to characterize a cancer by trying to quantify some subjective parameters (subjective in the sense that it is based on sampling that may or may not be representative):
"Because prostate biopsies are tissue samples from different areas of the prostate, the Gleason score on biopsy usually reflects your cancer’s true grade. However, in about 1 out of 5 cases the biopsy grade is lower than the true grade because the biopsy misses a higher grade (more aggressive) area of the cancer. It can work the other way, too, with the true grade of the tumor being lower than what is seen on the biopsy."
"1 out of 5" is a lot of room for error. Our bodies are just so complex that the "auto-mechanics guide" approach doesn't work. So you have to figure out what is going to work for your unique body. This has got to be frustrating, but please don't make any decision based on anger or frustration. Ask your doctors "what is the best type of treatment" but also ask them "if you had the identical situation as me, what would you do?" You may find out that what they would do for themselves is different than the "book-guided or standard recommendation-guided" answer they give you.
Be patient, ask lots of questions, hang in there, and (like Dennis said) don't forget to focus on your next build.
Scott
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Rusty,
see your message I just sent on SH.
If not received, pls send me your phone number, I'll call you.
Have some info that could be very beneficial to you, from a friend who had successful treatment 11 years ago.
Roger Vizioli
If anyone has a phone number for rusty, pls send it to my e-mail address below. Thank you!!!!!!!!!!!!!!
e-mail: avtrdinc@aol.com
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Rusty,
see your message I just sent on SH.
If not received, pls send me your phone number, I'll call you.
Have some info that could be very beneficial to you, from a friend who had successful treatment 11 years ago.
Roger Vizioli
If anyone has a phone number for rusty, pls send it to my e-mail address below. Thank you!!!!!!!!!!!!!!
e-mail: avtrdinc@aol.com
Roger,
We could all use that info. It could be any one of us at any time.
Rusty, stay well, I wish you the best.
Charles
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To all, received Rusty's phone number. Thx!
As requested by Charles, aka Avojet - For reference:
Specializing in Prostate Treatment and cure.
Dattoli Cancer Clinic
2803 Fruitville Rd.
Sarasota,FL 34237
Dr. Michael Dattoli
1-877-dattoli
941-957-1221
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Hi Rusty,
Over decades of unpleasant medical adventures, I've learned to treat my many doctors as my medical team, managing their communications with each other and double checking behind them. These days when so very much is known about the human body it's impossible for one doc to know enough about the body as a whole, as they did back in the early '70s and before. That's good and bad because it leads into a world of specialists and puts the burden of being the team manager on the patient. If you are lucky, as I am, you might have a family member or good friend who can go with you to listen and learn, and help you remember to ask the right questions and interpret their answers and options. I sure hope you have someone to fill this role, because when you're ill, you are in no frame of mind to process it all by yourself.
As mentioned by the good people who posted before me, the best thing you can do is lean into it with determination and try to have some kind of fun every day... hard as that may be. I know that sounds simple and corny, but it really has worked for me. I am lucky to have side-stepped cancer in my list of ailments, but have been beaten up pretty badly with other insults to my body.
I can commiserate with you in one way. I too was misdiagnosed this October by a radiologist who must've not had his coffee when he read my x-ray, leading me to hobble around with a walker on a hip thinking it was only Muscle spasms. All the while punishing it for 3 weeks thinking I was working through muscle spasms, till the Ortho Doc got an MRI to study. He sent it to 4 of his trusted colleagues for their opinions. Now that we know it's broken in 3 places, we're planning to get it fixed next week, assuming I don't misstep and really bust it between now and then. I spent yesterday hunting down my doctors and rounding up reports, blood-work, etc. to get the green light on surgery from each one. My wife is my personal savior, making sure I get where I have to go and seeing that everything gets done and done right.
Here's to hoping we can both lean into it and push through, and have a little fun every day. That goes for all of us.
Good luck,
The Other Rusty... Rockin' Rusty!
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Rusty
My advice stands from other thread.....
Prostrate Cxr is not a tomorrow you gonna die situation
FIND that ONE guy or Gal...that you Jazz with ---and believe ----and then, and only then, pull the trigger and settle in for the full treatment
There is NOT ONE thing wrong ---- when you get conflicting reports---to NOT go get ANOTHER opinion...I sure would
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Hi Rusty.
Seven years ago, I was diagnosed with prostate cancer. After hearing that news and settling down a bit, I made an appointment at Johns Hopkins in Baltimore. The doctor I met with did his own tests and then told me about the 4-5 options I had in dealing with my situation. Institutions like Hopkins use their own data from their own experiences, not the published data from all over the country. He talked about the advantages and shortcomings of each. He was completely unbiased and that gave me 100% faith in him.
I opted for tomo-radiation. It was a series of 43 visits to Hopkins for painless radiation. Sounds like a lot of trips but then again, I have one time to go around. I can tell you this with 100% certainty. Nothing is more important than having complete confidence in the facility and medical team you choose.
You have time to study the options and facilities carefully. I know Baltimore is not a short ride from Florida, but wherever you choose, it should have very little to do with location.
If I can help in any way, let me know by email or phone (302)547-4917.
Mark Weiss
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Well Rusty take care of your self and quit worrying so much. D>K
Now look who is talking. Last March when I was laying in my Sister-in-laws front yard and couldn't move, I will admit I was scared. Then the ER nurse told me what my blood pressure was. I asked her and she said it well over 200 over some thing. I said at least I'm not dead yet and why am I worrying as I am going to turn it over to my GOG and let him decide. Was on the way home the next day, but they wouldn't let me drive. Since then I have taken a couple of more spills because I forget to talk to my feet and knees.