Should I be seeking extra treatment?

Posted by Brettiquette @brettiquette, Jul 22 4:36pm

Hey guys and wives, this is my first post here but have been lurking a couple months. I have a pretty good heath plan at Kaiser in Southern California. I got my first PSA test last June at 56 years old with a result of 138. Immediate bone and CT scans were negative. Subsequent PET scan indicated no spread. Biopsy in July resulted in Gleason 9 (4+5) and PNI. started casodex and PSA had declined to 80 before RARP in late September. Pathology indicated 1 of 10 lymph nodes positive, seminal vestical and bladder neck invasions. No mention of cribriform. PSA of 9.4 six weeks after surgery. Had another PET scan mid December and lit up a bit in soft tissue near sacrum and rectum. Started Lupron (24 months) and SBRT in January on a TrueBeam (35 sessions). PSA in April was .3 and latest June results are < .1. I have an appointment tomorrow with urologist and have some topics to discuss including sexual health since I have severe ED. Bone and heart health. Pelvic pain issues. Also interested in more treatments I’ve read about here like adding a second ADT drug like Erleada, Estradiol or Eligard? Anticipating some reluctance since PSA is “undetectable”. Any thoughts on questions or treatments I should ask about? I’m very active and in pretty good shape, doing some weight training and coming out of the initial Lupron aches and pains that wrecked me after second 3 month dose. I’ve switched to a one mont dose and getting another tomorrow as well. Still have a bit of pain near rectum and in genitals, mostly in testicles, is that normal? Thanks for reading this far, if you have any tips or suggestions for questions to ask it is appreciated.
Brett

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for VancouverIslandHiker @vancouverislandhiker

Hi Jeff - what ADT drug has worked best for you and what one has the least side effects? I should know this stuff , for fellow friends at PC zoom meetings . I have never been on ADT . Post surgery 6 years now , 2.5 years post Salvage . Gleason 3+4 , PSA was 4.0 prior to surgery . Now after 22 sessions of radiation 2.5 years ago I am at 0.06 - 0.032 range . its still bouncing around a little , but this is where im at . Feeling good and hiking everyday with dogs. Prior to 22 sessions of EBRT / Salvage I was climbing very slowly to 0.14 , when I got Salvage done. My profile is OK ? Thanks Sir . James

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I’ve been on Lupron, Eligard and Orgovyx. I get exactly the same results from all of them. The thing is ADT is designed to take your testosterone down to close to zero. That is what causes most of the side effects.

If you really want to minimize side effects, then look into the patch trial. It showed that using estradiol patches (or gel) Can minimize the testosterone and reduce the negative side effects. It has the exact same medical results as ADT. People have fewer hot flashes, less cardiovascular problems and it’s not as hard on the bones.

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Profile picture for VancouverIslandHiker @vancouverislandhiker

Hi Jeff - what ADT drug has worked best for you and what one has the least side effects? I should know this stuff , for fellow friends at PC zoom meetings . I have never been on ADT . Post surgery 6 years now , 2.5 years post Salvage . Gleason 3+4 , PSA was 4.0 prior to surgery . Now after 22 sessions of radiation 2.5 years ago I am at 0.06 - 0.032 range . its still bouncing around a little , but this is where im at . Feeling good and hiking everyday with dogs. Prior to 22 sessions of EBRT / Salvage I was climbing very slowly to 0.14 , when I got Salvage done. My profile is OK ? Thanks Sir . James

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Your PSA is great. I wouldn’t consider going on ADT if you can keep it at that level without it. How your doctor recommend recommended it? You’ve been around here a long time and I’m sure you have seen most people with your PSA. Don’t have drugs to take.

Two months before my radiation, I had a six month Lupron After my salvage radiation, I had 2 1/2 years before it came back and I was not on any further ADT at that time. When my PSA hit .2 Lupron was prescribed.

I just wish my PSA had stayed down like yours has.

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Thanks for your kind words Jeff . Actually, my radiation oncologist and my urologist have both said that I am good at this time. In fact, my radiation oncologist Dr. Alexander, discharged me from Victoria Jubilee Hospital. So technically I don't report to Dr. Alexander anymore. He said if I need to, he can arrange a meeting, but just deal with my Urologist for now. Both indicated that I need PSA tests every six months and I convince them to do it every three months instead. So ... Both indicated that my PSA was low enough that I didn't need any other treatment. Interestingly, my Urologist Dr. Brian Yang, said that he suspects that I have healthy prostate cells in my pelvic area that are not a concern and are pushing out very very low levels of PSA. He said if this is the case which he is quite sure of, they will not turn into cancerous cells anytime soon. They will remain healthy. Kind of different isn't it? I thought the radiation would've killed the bad cells and the good cells? My urologist says this is not the case. Only the cancer cells are hit with the radiation and die and are taken over by your immune system. So I don't really know what to do at this point. I go hiking with my dogs for 10 to 14 km per day, stay away from alcohol and cigarettes, eat a healthy diet. I travel quite a bit as well being a former commercial pilot I have a lot of free trips in front of me. 🙂

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Profile picture for jeff Marchi @jeffmarc

Your PSA is great. I wouldn’t consider going on ADT if you can keep it at that level without it. How your doctor recommend recommended it? You’ve been around here a long time and I’m sure you have seen most people with your PSA. Don’t have drugs to take.

Two months before my radiation, I had a six month Lupron After my salvage radiation, I had 2 1/2 years before it came back and I was not on any further ADT at that time. When my PSA hit .2 Lupron was prescribed.

I just wish my PSA had stayed down like yours has.

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Jeff your in BC I think ? What part of the country are you in ? I wish Canada would invest in Proton machines ! gezzz we dont have one in BC.

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Profile picture for VancouverIslandHiker @vancouverislandhiker

Jeff your in BC I think ? What part of the country are you in ? I wish Canada would invest in Proton machines ! gezzz we dont have one in BC.

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I live in California

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Profile picture for jeff Marchi @jeffmarc

I’ve been on Lupron, Eligard and Orgovyx. I get exactly the same results from all of them. The thing is ADT is designed to take your testosterone down to close to zero. That is what causes most of the side effects.

If you really want to minimize side effects, then look into the patch trial. It showed that using estradiol patches (or gel) Can minimize the testosterone and reduce the negative side effects. It has the exact same medical results as ADT. People have fewer hot flashes, less cardiovascular problems and it’s not as hard on the bones.

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Thanks Jeff , Is this available in Canada I wonder ? I will review Estradiol ... you can remain on it continuous or is it meant to be 1 year on 1 year off ? With my PSA at 0.060 - 0.035 , I hope I never go near the stuff . But its always good to read up on things like this for sure . Thanks for all yoru help Sir . James

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Profile picture for jeff Marchi @jeffmarc

I live in California

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Got it . I am on Vancouver Island, BC . West coast of Canada . Great hiking, fishing , and weather actually . The best weather in Canada for sure . Seattle /Vancouver it rains too much . Vancouver Island has a warmer climate and is a micro climate and keeps things warmer in winter and much less rain . 6-8 hours up the I-5 from you I think ...maybe 10 hours . 🙂 .

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Profile picture for VancouverIslandHiker @vancouverislandhiker

Thanks Jeff , Is this available in Canada I wonder ? I will review Estradiol ... you can remain on it continuous or is it meant to be 1 year on 1 year off ? With my PSA at 0.060 - 0.035 , I hope I never go near the stuff . But its always good to read up on things like this for sure . Thanks for all yoru help Sir . James

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If you want to find out more about estradiol, go to the Ancan.org Website and search for videos from Wassersug. He’s been on Estradiol for more than two years. He wrote a book on ADT. He discusses using estradiol in detail.

He now uses estradiol gel instead of the patches. He says you have to get tested once a month to make sure your estrogen level is correct. I have been getting monthly blood test for PC for eight years, No big deal, Not sure how you feel.

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Profile picture for VancouverIslandHiker @vancouverislandhiker

Got it . I am on Vancouver Island, BC . West coast of Canada . Great hiking, fishing , and weather actually . The best weather in Canada for sure . Seattle /Vancouver it rains too much . Vancouver Island has a warmer climate and is a micro climate and keeps things warmer in winter and much less rain . 6-8 hours up the I-5 from you I think ...maybe 10 hours . 🙂 .

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I was in Vancouver and Victoria 60 years ago. Beautiful place, surprised to see Indian totem poles while driving through the countryside.

We went to the Seattle world fair and then western Canada.

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Profile picture for jeff Marchi @jeffmarc

If you want to find out more about estradiol, go to the Ancan.org Website and search for videos from Wassersug. He’s been on Estradiol for more than two years. He wrote a book on ADT. He discusses using estradiol in detail.

He now uses estradiol gel instead of the patches. He says you have to get tested once a month to make sure your estrogen level is correct. I have been getting monthly blood test for PC for eight years, No big deal, Not sure how you feel.

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Thanks , I will look into this . My PSA is 0.06 - 0.033 . It sort of hovered in there for 2.5 years as that is when I had Salvage . Dr thinks I have some healthy cells that pushes out micro amounts of normal PSA . He "thinks" this is the case . He is head of Urology for the Province of BC ....so his guess is like my research ! HA!!! I dont think I will need ADT for a long time , if at all I hope - God Willing- and by that time maybe things and drugs have changed ? I trust yoru doing well Jeff ? BTW ...love your state . California is such a beautiful state . I really like the north part .

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