This is one of the most difficult sites of navigating that I have ever experienced. The most irritating is that I can’t find out how to find those who I try to follow. There are other things that I’m having difficulty with, I’m just having difficulty putting it into words. Maybe it’s the Lupron. If I get any replies, I just hope I can find this post again.
Atlasjack, welcome to Healingwell.
To find a members post, go to their profile by clicking on “Members” at the top right, then click on the first initial of their screen name. From there you can find the member, click on their name and it will show their last 20 or so posts. Alternatively, you can use the search box at the top right, just enter their screen name, it’s like a Google search.
Do you have Prostate Cancer? I’m guessing yes if you are on Lupron. Care to share your history?
Feel free to ask questions, lots of knowledgeable folks here
I am not a doctor, just a guy without a prostate
Dx Age 64 Nov 2014, PSA 4.3
BX 3 of 12 cores positive original pathology G6
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology G7 (3+4), - ECE, - Margins, -LN, -SV (+ frozen section apex converted to negative)
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046, March 2018 .060. June 2018 .068, July 2018 - .082, August 2018, .078, August 2018 - .08 Start ADT. Sept 2018 Start SRT
Sept 2018 thru May 2021 –PSA = <.05
Decipher test, low risk, .37 score
My story.... https://tinyurl.com/45w7789x
To find a members post, go to their profile by clicking on “Members” at the top right, then click on the first initial of their screen name. From there you can find the member, click on their name and it will show their last 20 or so posts. Alternatively, you can use the search box at the top right, just enter their screen name, it’s like a Google search.
Do you have Prostate Cancer? I’m guessing yes if you are on Lupron. Care to share your history?
Feel free to ask questions, lots of knowledgeable folks here
I am not a doctor, just a guy without a prostate
Dx Age 64 Nov 2014, PSA 4.3
BX 3 of 12 cores positive original pathology G6
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology G7 (3+4), - ECE, - Margins, -LN, -SV (+ frozen section apex converted to negative)
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046, March 2018 .060. June 2018 .068, July 2018 - .082, August 2018, .078, August 2018 - .08 Start ADT. Sept 2018 Start SRT
Sept 2018 thru May 2021 –PSA = <.05
Decipher test, low risk, .37 score
My story.... https://tinyurl.com/45w7789x
I agree...It sounds simple...but it aint,..Ive been here 12 years and still dont get it...I think the trick is try not to thimk... (sic)
gleason 9 contained stopped psa testing jan 2015 with two consecutive psa's a year apart at 0.15
surgery 10/09 only treatment...eyes wide open...no sand...gonna live til I die...not the reverse forgive my virtues as well as my sins...age 78
gleason 9 contained stopped psa testing jan 2015 with two consecutive psa's a year apart at 0.15
surgery 10/09 only treatment...eyes wide open...no sand...gonna live til I die...not the reverse forgive my virtues as well as my sins...age 78
logoslidat said...
I agree...It sounds simple...but it aint,..Ive been here 12 years and still dont get it...I think the trick is try not to thimk... (sic)
after 12 years i still can't figure out how to quote a post when responding. sometimes it works but often it doesn't. i used to try but i've given up. and for an old guy i'm fairly tech savvy
age - 66
12/09 - PSA 6.8
G7 - 3+4 - all 12 cores positive
HT, BT, IGRT
7/17/21 - 11th year post treatment PSA <.1
"..You get braver as your options dwindle.." -- Fairwind
https://instagram.com/edraderphotography/
F8 said...
logoslidat said...
I agree...It sounds simple...but it aint,..Ive been here 12 years and still dont get it...I think the trick is try not to thimk... (sic)
after 12 years i still can't figure out how to quote a post when responding. sometimes it works but often it doesn't. i used to try but i've given up. and for an old guy i'm fairly tech savvy. Also I love all the moderators and think they should get big raises. Especially Tudpock
Go to the drop down menu on the upper right hand side of the post you want to quote. Drop the menu down and select "quote post". The quote will appear in a new window and you can add comments like these. You can also delete sections from the post you want to quote or even add things. Note the last sentence beginning with also that I added to your quote...
Jim
Forum Moderator-Prostate Cancer. Age 62 (74 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-12 yr: <1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
Atlasjack-- I'm suspicious that a first-time poster would pose a question like this without any introductory information about himself. Could it be that you are a former poster under a new identity (that has happened before). I am not accusing you of deception, but we've been jacked around here before.
Lol Tudpock! I kept comparing the two posts wondering how that happened.
My chuckle for the day.
Part I 2015, Age 54. Age now 61
PSA: 20.8 Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase
Part II 2019
Lupron/Xtandi, PSA: <0.01
2021: Reclast (zoledronic acid)
My chuckle for the day.
Part I 2015, Age 54. Age now 61
PSA: 20.8 Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase
Part II 2019
Lupron/Xtandi, PSA: <0.01
2021: Reclast (zoledronic acid)
Tim G said...
Atlasjack-- I'm suspicious that a first-time poster would pose a question like this without any introductory information about himself. Could it be that you are a former poster under a new identity (that has happened before). I am not accusing you of deception, but we've been jacked around here before.
Well, I think you may be right, as in Jack.
At least I learned how to quote text. Thanks Jack
Just because you are paranoid does not mean they ain't out to get you anyway...the truth makes the beast...lie
A couple of lines from way back in the day.
Yeh...I still got!...oh me of little faith...glory...and al'yall still get it...don't lie...
gleason 9 contained stopped psa testing jan 2015 with two consecutive psa's a year apart at 0.15
surgery 10/09 only treatment...eyes wide open...no sand...gonna live til I die...not the reverse forgive my virtues as well as my sins...age 78
A couple of lines from way back in the day.
Yeh...I still got!...oh me of little faith...glory...and al'yall still get it...don't lie...
gleason 9 contained stopped psa testing jan 2015 with two consecutive psa's a year apart at 0.15
surgery 10/09 only treatment...eyes wide open...no sand...gonna live til I die...not the reverse forgive my virtues as well as my sins...age 78
Thanks for the help. Slowly learning my around.
My name is actually Jack. Atlas comes from the name of the first cervical vertebrae C1. I am a Chiropractor that specializes in adjusting the Atlas. I consider it to be the most important vertebrae in the spine.
I was diagnosed with Advanced Prostate Cancer March 16, 2020. The beginning of the COVID-19 restrictions. I was literally walking out the door to visit my urologist to get my results from my biopsy when I got a phone call from my urologist. He told me my results over the phone. During that conversation he told me that I should have surgery no later than the first week in May. Several days later I got a call from his office, not him. They told me that surgery was postponed until further notice and would give me a call sometime in May.
It took several weeks for me to get my biopsy results report. The results are as follows:
12 cores plus 4 cores from the right mid peripheral zone.
2 – no evidence, 1 – suspicious, 6 – 3+4, 1 – 4+3, 1 – 4+4, 1 – 4+5. All 4 from the peripheral zone were 5+4.
By mid May I had not heard from my urologist so I changed urologists. Side note (the first urologist only spoke of RP. Never once suggested any options).
After a lengthy conversation with my new urologist we both felt that EMRT was the best option for me. Bone scan was somewhat suspicious but not definite. MRI and CT Scan were somewhat suspicious, just nothing large enough to be positive.
My PSA was 54 when treatment started which was June 8, 2020. 6 mth Lupron shot and 50 mg casodex. Began 45 EBRT mid August. By December my testosterone was 2.4 and my PSA was and still is 0.01.
Lupron has been a trip but worth it in my opinion. I’ve got 8 beautiful grandkids ages 2-14. And I plan on being around for a long time.
I enjoy reading posts on this site. As I learn my way around I make some comments. Until then I’ll keep enjoying the site.
Hope this wasn’t too long.
My name is actually Jack. Atlas comes from the name of the first cervical vertebrae C1. I am a Chiropractor that specializes in adjusting the Atlas. I consider it to be the most important vertebrae in the spine.
I was diagnosed with Advanced Prostate Cancer March 16, 2020. The beginning of the COVID-19 restrictions. I was literally walking out the door to visit my urologist to get my results from my biopsy when I got a phone call from my urologist. He told me my results over the phone. During that conversation he told me that I should have surgery no later than the first week in May. Several days later I got a call from his office, not him. They told me that surgery was postponed until further notice and would give me a call sometime in May.
It took several weeks for me to get my biopsy results report. The results are as follows:
12 cores plus 4 cores from the right mid peripheral zone.
2 – no evidence, 1 – suspicious, 6 – 3+4, 1 – 4+3, 1 – 4+4, 1 – 4+5. All 4 from the peripheral zone were 5+4.
By mid May I had not heard from my urologist so I changed urologists. Side note (the first urologist only spoke of RP. Never once suggested any options).
After a lengthy conversation with my new urologist we both felt that EMRT was the best option for me. Bone scan was somewhat suspicious but not definite. MRI and CT Scan were somewhat suspicious, just nothing large enough to be positive.
My PSA was 54 when treatment started which was June 8, 2020. 6 mth Lupron shot and 50 mg casodex. Began 45 EBRT mid August. By December my testosterone was 2.4 and my PSA was and still is 0.01.
Lupron has been a trip but worth it in my opinion. I’ve got 8 beautiful grandkids ages 2-14. And I plan on being around for a long time.
I enjoy reading posts on this site. As I learn my way around I make some comments. Until then I’ll keep enjoying the site.
Hope this wasn’t too long.
Hey Jack,
I'm thinking you probably had another Lupron shot after 6 months. How long will you be continuing with Lupron? You won't have a guage for how well the RT worked until you're done with ADT. Let us know how it goes.
Good luck!
Part I 2015, Age 54. Age now 61
PSA: 20.8 Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase
Part II 2019
Lupron/Xtandi, PSA: <0.01
2021: Reclast (zoledronic acid)
I'm thinking you probably had another Lupron shot after 6 months. How long will you be continuing with Lupron? You won't have a guage for how well the RT worked until you're done with ADT. Let us know how it goes.
Good luck!
Part I 2015, Age 54. Age now 61
PSA: 20.8 Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase
Part II 2019
Lupron/Xtandi, PSA: <0.01
2021: Reclast (zoledronic acid)
I had my third and final Lupron shot June 8, 2021. Will continue Casodex 50mg through Dec. I do find it difficult and frustrating trying something different. Will be glad when the ADT wears off.
Before Tx. PSA 54, Gleason 9. Began tx June 5, 2020. Doing 18 mths ADT and did 45 EBRT. June 2021 PSA .01, testosterone 2.4. Had last Lupron shot. Now its just wait and see.
Before Tx. PSA 54, Gleason 9. Began tx June 5, 2020. Doing 18 mths ADT and did 45 EBRT. June 2021 PSA .01, testosterone 2.4. Had last Lupron shot. Now its just wait and see.
Welcome Jack, from a fellow Jack.
Your dx was similar to mine, high PSA, loaded prostate and a lot of G4. The biopsy didn’t find G5 in mine, but my doc said he suspected it was present given the amount of G4 that was found. Three surgeons said no surgery for me and I pursued radiation and ADT for three years. Radiation was a non-event for side effects and ADT posed QOL challenges that I tolerated.
Nearly 11 years later I am still PSA undetectable and free of negative treatment side effects. You are only a year out and I suggest you don’t skimp on the ADT. You have knocked down the PCa and need to keep it down. G4 and G5 can be really tough to kill. It sounds like you will be on for at least 18 months. What was the original suggestion? With G5 it is common to go 24-36 months bolstered by several studies.
Best wishes for continued success and don’t turn your back on G9 due to ADT side effects. I found that by exercising more, eating more fresh fruits and vegetables, less animal fat, eliminated caffeine, drink a lot of green tea and limited alcohol; all helped a lot in tamping down the ADT side effects.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta
Your dx was similar to mine, high PSA, loaded prostate and a lot of G4. The biopsy didn’t find G5 in mine, but my doc said he suspected it was present given the amount of G4 that was found. Three surgeons said no surgery for me and I pursued radiation and ADT for three years. Radiation was a non-event for side effects and ADT posed QOL challenges that I tolerated.
Nearly 11 years later I am still PSA undetectable and free of negative treatment side effects. You are only a year out and I suggest you don’t skimp on the ADT. You have knocked down the PCa and need to keep it down. G4 and G5 can be really tough to kill. It sounds like you will be on for at least 18 months. What was the original suggestion? With G5 it is common to go 24-36 months bolstered by several studies.
Best wishes for continued success and don’t turn your back on G9 due to ADT side effects. I found that by exercising more, eating more fresh fruits and vegetables, less animal fat, eliminated caffeine, drink a lot of green tea and limited alcohol; all helped a lot in tamping down the ADT side effects.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta
Glad to hear you’re doing well for so long. Gives me hope. The original time was 18 months.
I feel the only way to know how well radiation did is to take a break from ADT. And at the first sign that PSA is on the rise restart ADT. Because I know that ADT keeps my PSA at 0.01. It’s been that since the beginning of RT. Here where I live a local hospital has a wellness program that will check PSA for $17. This is the same place my urologist has me use since it is closer to my home than he is. So I do my own every two months at this point and will continue as long as I deem necessary.
Before Tx. PSA 54, Gleason 9. Began tx June 5, 2020. Doing 18 mths ADT and did 45 EBRT. June 2021 PSA .01, testosterone 2.4. Had last 6 mth Lupron shot June 8, 2021. Will continue with Casodex 50mg thru Dec. 2021.
I feel the only way to know how well radiation did is to take a break from ADT. And at the first sign that PSA is on the rise restart ADT. Because I know that ADT keeps my PSA at 0.01. It’s been that since the beginning of RT. Here where I live a local hospital has a wellness program that will check PSA for $17. This is the same place my urologist has me use since it is closer to my home than he is. So I do my own every two months at this point and will continue as long as I deem necessary.
Before Tx. PSA 54, Gleason 9. Began tx June 5, 2020. Doing 18 mths ADT and did 45 EBRT. June 2021 PSA .01, testosterone 2.4. Had last 6 mth Lupron shot June 8, 2021. Will continue with Casodex 50mg thru Dec. 2021.
Hello, ATLASJACK ----
I want to welcome you here, and extend a handshake and hearty greeting to you today.
Thank you for sharing your story with us here.
I can easily see why you switched to a new doctor --- I have had to do that in the past, too. I had a doctor who saw only "brick walls" --- and I needed a doctor who could knock down brick walls and see beyond them.
Your step in doing that means you have already become your own advocate --- a powerful personal step, good sir!
My diagnosis occurred in 2013 --- with a rapidly skyrocketing PSA, over 100 --- and the prostate cancer cells had begun to spread into both my lungs by that point.
My treatment history is shown below my signature. I have pursued a proactive series of treatments, over time. My doctors have been a GODSEND to me.
I am a teacher, and continued to teach full-time since my diagnosis. I stay active, walk each day, and volunteer in the community.
You have had great SUCCESS with your treatments, ATLASJACK! When I read your treatment story, I was cheering.
The steps you and your doctors took led to tremendous treatment success. You packed a mighty wallop against your initial PSA score! Very thankful to read this!
My lesson learned, these past few years --- stay vigilant, form a strong bond with your doctors, and visit the lab on a consistent basis ---- to stay on top of things. Along the way, keep living life to the fullest ---- stay active and involved with friends, family, hobbies, interests, and your favorite activities.
It's valuable to hear you have been reading here for a while --- and now you have posted and become a contributor. We welcome your involvement here, and hope you will post again!
Great to hear from you, ATLASJACK! You have shared a powerful story of treatment success!
Handshake, camaraderie, fellowship ----
CYCLONE ---- # Iowa State University
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, & currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & ZYTIGA & RADIATION
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.10 - Undetectable Range - Treatments Ongoing
Jack,
Keep in mind that when you go off ADT your PSA almost certainly will increase because you still have your prostate. Your PSA may even "bounce" around for awhile. Hopefully it will eventually stabilize at low value.
Part I 2015, Age 54. Age now 61
PSA: 20.8 Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase
Part II 2019
Lupron/Xtandi, PSA: <0.01
2021: Reclast (zoledronic acid)
Keep in mind that when you go off ADT your PSA almost certainly will increase because you still have your prostate. Your PSA may even "bounce" around for awhile. Hopefully it will eventually stabilize at low value.
Part I 2015, Age 54. Age now 61
PSA: 20.8 Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase
Part II 2019
Lupron/Xtandi, PSA: <0.01
2021: Reclast (zoledronic acid)
I would like to thank all who responded. I will continue to read posts and be an active member.
Before Tx. PSA 54, Gleason 9. Began tx June 5, 2020. Doing 18 mths ADT and did 45 EBRT. June 2021 PSA .01, testosterone 2.4. Had last 6 mth Lupron shot June 8, 2021. Will continue with Casodex 50mg thru Dec. 2021.
Before Tx. PSA 54, Gleason 9. Began tx June 5, 2020. Doing 18 mths ADT and did 45 EBRT. June 2021 PSA .01, testosterone 2.4. Had last 6 mth Lupron shot June 8, 2021. Will continue with Casodex 50mg thru Dec. 2021.
AJ, as mattam noted, once you're off ADT, you can expect to see your PSA increase to some level and even wander around a bit around a low level. This does NOT indicate a recurrence, it means you still have a prostate that is putting out a little PSA.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
However, some of us radiation men came off ADT and remained PSA undetectable or didn’t increase as the ADT wore off. So there are no absolutes as a few have mentioned regarding the PSA as testosterone recovered. The radiated prostate generally gives off very little PSA compared to an untreated one. It does not fully return to normal.
It will generally take from 6 to 18 months for your testosterone to recover above castrate levels after the end of the last shot duration. Lupron has about a six month half life and depending on how sensitive you are to it will determine your T recovery. If, and when your PSA starts trending up you will have a window of up to 2.0 before a PCa recurrence is stated. However with the amount of G4 and G5 and high PSA at dx I would suspect any PSA increase as a recurrence and start looking for PCa with scans and be prepared for additional treatment.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta
It will generally take from 6 to 18 months for your testosterone to recover above castrate levels after the end of the last shot duration. Lupron has about a six month half life and depending on how sensitive you are to it will determine your T recovery. If, and when your PSA starts trending up you will have a window of up to 2.0 before a PCa recurrence is stated. However with the amount of G4 and G5 and high PSA at dx I would suspect any PSA increase as a recurrence and start looking for PCa with scans and be prepared for additional treatment.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta
My PSA drifted up after radiation, but only as far as 0.20, before settling in at 0.03 (two readings in a row). Couldn't be more pleased with that. Unfortunately, my testosterone has never fully recovered--it's certainly higher than when I was on ADT, but significantly lower than pre-treatment.
Atlasjack--I hope you have a similar path. (Well, the PSA part at least.) Good luck and welcome to Healingwell!
Age 60, Diagnosed at 51
PSA 9.6, Gleason: 9 (5+4), three 7s (3+4)
Chose triple play of HDR brachy, IMRT and ADT (Casodex, Lupron and Zytiga)
Completed ADT (18 months) in April 2014
9/20: PSA = 0.03
Atlasjack--I hope you have a similar path. (Well, the PSA part at least.) Good luck and welcome to Healingwell!
Age 60, Diagnosed at 51
PSA 9.6, Gleason: 9 (5+4), three 7s (3+4)
Chose triple play of HDR brachy, IMRT and ADT (Casodex, Lupron and Zytiga)
Completed ADT (18 months) in April 2014
9/20: PSA = 0.03