PSA numbers: Questions about new treatments

Posted by marko1 @marko1, Aug 27, 2019

This is for anyone that can answer questions on the different treatments of prostate cancer
I have spoken with radiologist oncologist about the radiation treatments about the radiation , treatment with seeds ,radical removal
And freezing the prostate cryo-Genex type thing
Why question to the clinic mayo clinic is already new treatments that aren’t so destructive to the prostate all treatments I’ve read about destroyed the prostate why can’t we just kill the cells in the tumor within the prostate before it spreads that way we can save more than just the prostate mentally

Anyone have any suggestions new trials new treatments I don’t know what to do about those numbers are low but biopsy showed Gleason score of three 6’s and a 7
Yes I’m looking to see if there’s any positive treatments coming down the pike I would love to be involved in it thank you

Sorry, I don't have any examples. I searched Pennsylvania for urological specialists specific to your area and these guys popped up. I know, it's not really much to go off of but I'd trust a medical facility that specializes in prostate surgery vs a generic clinic that has a urologist on staff. I hope they're in your insurance network. Good luck and keep 'er movin'.

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@stoney

Sorry, I don't have any examples. I searched Pennsylvania for urological specialists specific to your area and these guys popped up. I know, it's not really much to go off of but I'd trust a medical facility that specializes in prostate surgery vs a generic clinic that has a urologist on staff. I hope they're in your insurance network. Good luck and keep 'er movin'.

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I appreciate that very much . Were checking to make sure they take our insurance. Thank you very much. Scary times for me

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I got to say, anxiety is the worse. You confront your mortality and yes, you're going to cry a little. Why me? If athletics has taught you anything, stay tough, stay in shape (it will help diffuse your anxiety), and eat right. All of these things are in YOUR control and will pay dividends after your prescribed treatment. Try not to worry and pick a good team of experts to care for your condition (don't settle because of location or convenience) This is YOUR life, fight for it!

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@stoney

I got to say, anxiety is the worse. You confront your mortality and yes, you're going to cry a little. Why me? If athletics has taught you anything, stay tough, stay in shape (it will help diffuse your anxiety), and eat right. All of these things are in YOUR control and will pay dividends after your prescribed treatment. Try not to worry and pick a good team of experts to care for your condition (don't settle because of location or convenience) This is YOUR life, fight for it!

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If you'd like to talk at any time, you can send me a friend request at Jim Guild on Facebook or send me a private message here on Connect.

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@stoney

If you'd like to talk at any time, you can send me a friend request at Jim Guild on Facebook or send me a private message here on Connect.

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Thanks I did the Facebook. There are a couple Jim’s. Where are you from

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Mercer WI

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I just watched the Q and A on prostrate cancer from Mayo Clinic posted on Oct. 3. It has a lot of useful information about psa testing, biopsies, treatment options, side effects, and reoccurring cancer. I wish I had seen this video when I was diagnosed with cancer a year ago. I discovered that my local urologist didn't use the most current procedures in my diagnosis. It reinforced my decision to seek out a research hospital like Mayo to pursue my treatment. They followed some procedures in my diagnosis that my local doctor left out.
My Mayo radiation oncologist also used a treatment that included proton beam radiation with Antigen Deprivation Therapy that increased my survival chances by 20% over just radiation. By the way, you can go on the American Medical Association web site and register as a patient and access their reports on prostrate cancer. I used the site to verify my radiation oncologist's treatment choice. Unfortunately, the report indicates that many doctors don't use that treatment option for advanced forms of my cancer (Gleason score of 8+).
I think my anxiety level would've been a lot lower, if I had known that the medical staff were using the most recent knowledge to determine If I had cancer and it's extent. Also, what are the factors that determine the best treatment option.
The two main take aways I got from the Q and A were have an MRI before having a biopsy. It will not only tell if you have cancer, but also focus the biopsy. The second was the difference in the treatment based on age. My radiation treatment was appropriate for my age (73), but if I was younger, surgery would've been more appropriate.

Hope this is helpful.

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I used Focal Laser Ablation see Dr Sperling – Sperling Prostate Center in Florida.

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@waynen

I just watched the Q and A on prostrate cancer from Mayo Clinic posted on Oct. 3. It has a lot of useful information about psa testing, biopsies, treatment options, side effects, and reoccurring cancer. I wish I had seen this video when I was diagnosed with cancer a year ago. I discovered that my local urologist didn't use the most current procedures in my diagnosis. It reinforced my decision to seek out a research hospital like Mayo to pursue my treatment. They followed some procedures in my diagnosis that my local doctor left out.
My Mayo radiation oncologist also used a treatment that included proton beam radiation with Antigen Deprivation Therapy that increased my survival chances by 20% over just radiation. By the way, you can go on the American Medical Association web site and register as a patient and access their reports on prostrate cancer. I used the site to verify my radiation oncologist's treatment choice. Unfortunately, the report indicates that many doctors don't use that treatment option for advanced forms of my cancer (Gleason score of 8+).
I think my anxiety level would've been a lot lower, if I had known that the medical staff were using the most recent knowledge to determine If I had cancer and it's extent. Also, what are the factors that determine the best treatment option.
The two main take aways I got from the Q and A were have an MRI before having a biopsy. It will not only tell if you have cancer, but also focus the biopsy. The second was the difference in the treatment based on age. My radiation treatment was appropriate for my age (73), but if I was younger, surgery would've been more appropriate.

Hope this is helpful.

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Thank you yes helpful

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@waynen

I just watched the Q and A on prostrate cancer from Mayo Clinic posted on Oct. 3. It has a lot of useful information about psa testing, biopsies, treatment options, side effects, and reoccurring cancer. I wish I had seen this video when I was diagnosed with cancer a year ago. I discovered that my local urologist didn't use the most current procedures in my diagnosis. It reinforced my decision to seek out a research hospital like Mayo to pursue my treatment. They followed some procedures in my diagnosis that my local doctor left out.
My Mayo radiation oncologist also used a treatment that included proton beam radiation with Antigen Deprivation Therapy that increased my survival chances by 20% over just radiation. By the way, you can go on the American Medical Association web site and register as a patient and access their reports on prostrate cancer. I used the site to verify my radiation oncologist's treatment choice. Unfortunately, the report indicates that many doctors don't use that treatment option for advanced forms of my cancer (Gleason score of 8+).
I think my anxiety level would've been a lot lower, if I had known that the medical staff were using the most recent knowledge to determine If I had cancer and it's extent. Also, what are the factors that determine the best treatment option.
The two main take aways I got from the Q and A were have an MRI before having a biopsy. It will not only tell if you have cancer, but also focus the biopsy. The second was the difference in the treatment based on age. My radiation treatment was appropriate for my age (73), but if I was younger, surgery would've been more appropriate.

Hope this is helpful.

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Hey @stoney, thanks for offering to be contacted directly. You'll notice that I removed your personal telephone number from the public discussion. We recommend sharing personal contact information by using the secure private message function. Learn how it works here https://connect.mayoclinic.org/get-started-on-connect/

Here's the link to the Video Q&A that Wayne refers to as well as 2 earlier Q&A sessions archived on Connect:

Video Q&A about Prostate Cancer with Dr. Erik Castle and Dr. Scott Cheney – Oct 3, 2019
https://connect.mayoclinic.org/webinar/video-qa-about-prostate-cancer-1/
Video Q&A about Prostate Cancer with Dr. Mitchell Humphreys – Sept 25, 2017
https://connect.mayoclinic.org/webinar/video-qa-about-prostate-cancer/
Video Q&A about Prostate Cancer with Dr. Erik Castle – Sept 28, 2016
https://connect.mayoclinic.org/webinar/on-facebook-live-urologist-erik-castle-m-d-talks-prostate-cancer/
Wayne, I like how you outlined your decision making criteria. It's not easy.

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Thank you, Colleen. I was not aware the private message was an option. Awesome!

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You may wish to look at focal laser ablation or hifu, or an alternative Rick Simpson Oil – Phoenix Tears

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@semeon

I took an approach using Focal Laser Ablation with Dr Sperling in Florida. This was in 2014 then again in 2018. You may want to research it for yourself. I also tried Marajuana Oil I used 60 grams in 90 days following the Rick Simpson Protocol. It’s something else you may wish to research. I am also taking Lupron for the past year.

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Hi semeon………I sent a reply but it didn't appear to work right and don't think it went out. Pardon if this is a duplication. I've looked at the Sperling site and am in contact with Mayo but don't have any 1st hand knowledge yet. No one I have spoken to knows about the Laser Ablation and you are the 1st person I;ve seen to actually have the procedure. I missed 1 of the basic markers of their criteria so I'm not sure if they will take me. I have a Gleason 7 and Genomic text was above the median and marked as more aggressive. So have been considering Surgery but have a very short time (about 3 months) to figure out if the Laser Ablation is an option for me. You mentioned you had it done twice, and I'm curious if they didn't get it all the 1st time or you had some recurrence so they did it again. The good thing is the procedure can be done more than once. Also I would be happy to have the extra imaging done to actually see what is there which I believe is done for the Ablation. I've been told that if I do surgery or radiation they don't do extra imaging and only go by the biopsy itself. If you have anything you feel you can share, I'd love to hear…………..Regards, Dave

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@ronan2011

Hi semeon………I sent a reply but it didn't appear to work right and don't think it went out. Pardon if this is a duplication. I've looked at the Sperling site and am in contact with Mayo but don't have any 1st hand knowledge yet. No one I have spoken to knows about the Laser Ablation and you are the 1st person I;ve seen to actually have the procedure. I missed 1 of the basic markers of their criteria so I'm not sure if they will take me. I have a Gleason 7 and Genomic text was above the median and marked as more aggressive. So have been considering Surgery but have a very short time (about 3 months) to figure out if the Laser Ablation is an option for me. You mentioned you had it done twice, and I'm curious if they didn't get it all the 1st time or you had some recurrence so they did it again. The good thing is the procedure can be done more than once. Also I would be happy to have the extra imaging done to actually see what is there which I believe is done for the Ablation. I've been told that if I do surgery or radiation they don't do extra imaging and only go by the biopsy itself. If you have anything you feel you can share, I'd love to hear…………..Regards, Dave

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Hi Dave, you are where I was a year ago. I was looking for the best treatment with the least amount of side effects. My Urologist gave me a book by Dr Patrick Walsh from John Hopkins that went through all of the treatment options. Walsh wasn't too keen on targeted Ablation because of the chance of missing cancer cells in the prostrate. He felt the Ablation of the entire prostrate had serious effects on the urethra and rectum. He was speaking from several years ago and the procedure may be better now.
I chose the proton beam therapy, because the men I talked to had few side effects, except irritation of the urethra during treatment. However, my Gleason score was 8, and
my radiation oncologist said by adding hormone therapy to the radiation increased my changes of survival by 20 per cent. I've talked to several men who had the proton beam therapy without hormone therapy and they resumed normal activity after treatment. There is a group that formed out of proton beam treatment at Loma Linda Med Center called the Brotherhood of the Balloon. They have a web site you can access for more information.
You actually have better diagnostics then I had and a radiation oncologist can tell you what would be your treatment option. You may have gone down this road already.
Hormone therapy shrinks the prostrate and can kill cancer cells that may have gotten in your blood stream. I just saw a study where they found cancer cells in blood of 30 of 37 men who had a prostatectomy. Their Gleason score was 8-10. My concern is killing all cells, even if I have to live with Lupron side effects for 18 months. I believe that up to 40 per cent of men treated can get recurrent cancer.
The good news is that surgery and radiation treatment result in same survival rates, so it does come down to what you are willing to live with that goes with the treatment. There's a book written by Robert Marckini, You Can Beat Prostrate Cancer, where he used a table of pros and cons for different types of treatments. It might help. His is a little old and may need
updating.
I wish you well. I know how hard this is.

Liked by dandl48

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@waynen

Hi Dave, you are where I was a year ago. I was looking for the best treatment with the least amount of side effects. My Urologist gave me a book by Dr Patrick Walsh from John Hopkins that went through all of the treatment options. Walsh wasn't too keen on targeted Ablation because of the chance of missing cancer cells in the prostrate. He felt the Ablation of the entire prostrate had serious effects on the urethra and rectum. He was speaking from several years ago and the procedure may be better now.
I chose the proton beam therapy, because the men I talked to had few side effects, except irritation of the urethra during treatment. However, my Gleason score was 8, and
my radiation oncologist said by adding hormone therapy to the radiation increased my changes of survival by 20 per cent. I've talked to several men who had the proton beam therapy without hormone therapy and they resumed normal activity after treatment. There is a group that formed out of proton beam treatment at Loma Linda Med Center called the Brotherhood of the Balloon. They have a web site you can access for more information.
You actually have better diagnostics then I had and a radiation oncologist can tell you what would be your treatment option. You may have gone down this road already.
Hormone therapy shrinks the prostrate and can kill cancer cells that may have gotten in your blood stream. I just saw a study where they found cancer cells in blood of 30 of 37 men who had a prostatectomy. Their Gleason score was 8-10. My concern is killing all cells, even if I have to live with Lupron side effects for 18 months. I believe that up to 40 per cent of men treated can get recurrent cancer.
The good news is that surgery and radiation treatment result in same survival rates, so it does come down to what you are willing to live with that goes with the treatment. There's a book written by Robert Marckini, You Can Beat Prostrate Cancer, where he used a table of pros and cons for different types of treatments. It might help. His is a little old and may need
updating.
I wish you well. I know how hard this is.

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Thanks for the different ideas! I haven't been real keen on radiation so far but there are a lot of guys who do opt for it. Have a friend who had surgery and a while later had some cancer in another area and he just did radiation and hormone therapy together and it worked great and he was surprised at how little side effects he had. Much less than expected. ………The book may need updating as procedures seem to be advancing rapidly these days. ………I've gone to a support group a few times and heard lots of stories but a lot of different approaches taken and people have different medical things going on so hard to pinpoint 1 thing or protocol to take. They have a different medical professional each meeting. After I told my story and about meeting with the different radiation and oncology people and then trying to make a decision about what protocol to follow, trying to decide about something I knew nothing about a few months before and still know very little, this Dr. was rather taken aback that such an important decision isn't helped along more by group interaction with all the medical professionals involved. Basically that we have to troll around and find out whatever we can and then make the decision ourselves when we barely know what is going on………….

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