I keep reading about the horrible side effects of Hormonal Therapy and it seems it destroys quality of life, increases weight 10%, messes with bone, lose hair, increases pain, messes with emotions etc...
I'd appreciate hearing opinions from anyone who has chosen this path.
One Doc in Ca. suggested just doing it for a couple months...
I keep reading about the horrible side effects of Hormonal Therapy and it seems it destroys quality of life, increases weight 10%, messes with bone, lose hair, increases pain, messes with emotions etc...
I'd appreciate hearing opinions from anyone who has chosen this path.
One Doc in Ca. suggested just doing it for a couple months...
My first consultation the Radiologist/Oncologist were recommending hormone treatments. Then they said would not recommend if have cardiovascular issues. I have heart failure so they said no hormone treatment. I was listed as intermediate risks because only 1 of my biopsies was 3+4 all other biopsies were 3+3.
I then had a Decipher test done. It came back as low risk. The original consultation Oncologist then said hormone treatment not recommended only curative radiation. But this provider did not offer proton just photon.
I chose to go to UFPTI which does have proton. So I am one of the ones who did have proton treatments without hormone treatment. I did not want hormone treatments unless absolutely necessary. I am an avid exerciser and would affect this along with being a heart failure patient.
Did you have a Decipher test? I would really recommend it. It gives a more precise diagnosis. Also make sure you get second opinions and not just a single source. There are also many excellent sites to read up on treatments and get professional medical advice which allows you to be an informed patient and be able to question and asked questions.
I keep reading about the horrible side effects of Hormonal Therapy and it seems it destroys quality of life, increases weight 10%, messes with bone, lose hair, increases pain, messes with emotions etc...
I'd appreciate hearing opinions from anyone who has chosen this path.
One Doc in Ca. suggested just doing it for a couple months...
I did a post that gave my experience with this. I also got the suggestion of doing it for a month to see how I feel. Please read my post. I know it is really hard to know what to do and you get so many telling you different things. That is why it is so important to have second opinions and research different treatments. Not one treatment is best for all and really depends on your personal health and specific degree and type of cancer.
I am done with my treatments. I did have the side affects mentioned I would get but none of them required medications or procedures. I did have some mild fatique but was nothing I could not deal with and had subsided now two weeks later. Being an avid bike rider I was not able to ride because of Space/Oar. So when I started back OMG were my legs out of shape and boy did I get sore.
I keep reading about the horrible side effects of Hormonal Therapy and it seems it destroys quality of life, increases weight 10%, messes with bone, lose hair, increases pain, messes with emotions etc...
I'd appreciate hearing opinions from anyone who has chosen this path.
One Doc in Ca. suggested just doing it for a couple months...
Much appreciated guys... I have always been super sensitive to any drugs and even supplements.
I don't see the upside to feeling horrible for years in my 70's.
I'd rather, pray, kick ass and get a new horse to compete in 50 mile endurance races thru the Sierra Nevada Mountains.
You can't unscramble eggs and I sure don't want to waste the quality of my life on a percentage.
I feel great right now and I can't wait to start working out again after the 2nd biopsy.
Just waiting for the results. Blessings,
I had proton without ADT. I was an otherwise healthy, very active 74 year old who did not want some of my last good years potentially ruined by ADT. If my life expectancy was shortened somewhat but quality was increased, count me in. One of the radiologist that I consulted with estimated that while deleting ADT might result in a 20% worse outcome, perhaps a 15% better outcome would occur from avoiding all the other health impairments that could occur from ADT. One of the specific considerations for me was the amount of dementia in my family on my fathers side. It is important to state that this radiologist estimate was for my specific case and personal considerations!
I did all the recommended things( bone scan, mri, PSMA pet, decipher and pathology second opinion) as well as consulted with urology oncologist, photon radiologist and two proton radiologists. My Gleason was 4+3 (2 cores) and 3+4. ( 3 cores) out of 10 samples. My PSA was 8.9. Post-treatment PSA was 2.9, 2.3,4.9 ( spike that happens sometimes) and 1.7. I completed proton treatments a little over a year ago so only time will tell if this was the right decision but you make the best decision for you and don't look back.
I just finished the five-treatment proton at Mayo Phoenix. I am two months shy of 74 and I am very similar to you. I had Gleason 4-3 in two cores and Gleason 3-4 in three cores all from the same location of my 120 gm prostate. I had a 30 core MRI fusion guided transperineal biopsy. My PSA was 2.9 and my original MRI showed a 7mm lesion. My three-month post radiation PSA was undetectable. I also did not take the Lupron shot because I had been on TRT since 2008 and when I stop applying the Androgel I go castrate in 60 hours. My radiation oncologist didn't believe me, and he wanted to jab me so bad he could taste it from my opinion before I left the hospital during our initial meeting. He tested me about a month later and I was at 12 ng/dl. All my research shows that ADT makes almost no difference in men over 70 to BCR or overall survival. Why did I stop my testosterone gel? Just hedging my bets, I guess, and I didn't need to take a drug to get the same results. I plan on going back on the TRT in September after visiting my nine-month-old granddaughter. Don't want any testosterone rubbing off on her.
I just finished the five-treatment proton at Mayo Phoenix. I am two months shy of 74 and I am very similar to you. I had Gleason 4-3 in two cores and Gleason 3-4 in three cores all from the same location of my 120 gm prostate. I had a 30 core MRI fusion guided transperineal biopsy. My PSA was 2.9 and my original MRI showed a 7mm lesion. My three-month post radiation PSA was undetectable. I also did not take the Lupron shot because I had been on TRT since 2008 and when I stop applying the Androgel I go castrate in 60 hours. My radiation oncologist didn't believe me, and he wanted to jab me so bad he could taste it from my opinion before I left the hospital during our initial meeting. He tested me about a month later and I was at 12 ng/dl. All my research shows that ADT makes almost no difference in men over 70 to BCR or overall survival. Why did I stop my testosterone gel? Just hedging my bets, I guess, and I didn't need to take a drug to get the same results. I plan on going back on the TRT in September after visiting my nine-month-old granddaughter. Don't want any testosterone rubbing off on her.
Did you have prostate cancer and have you been treated for it? I took the shot one time when I went on a scuba vacation and didn't want the gel to wash off. By the time the two weeks were up the pain from the shot had finally worn off, so I am not a fan of the injections. Another reason is the T levels increase real high right after the injection then fade after the two weeks sort of like a roller coaster ride.
Did you have prostate cancer and have you been treated for it? I took the shot one time when I went on a scuba vacation and didn't want the gel to wash off. By the time the two weeks were up the pain from the shot had finally worn off, so I am not a fan of the injections. Another reason is the T levels increase real high right after the injection then fade after the two weeks sort of like a roller coaster ride.
Yes I had prostate cancer 2 nodules 4+3 and 3+4 PSA 4.6. Treated with 6 months Lupron and 20 proton sessions. Lupron sucked the life out of me and I was ready for the nursing home.
My doctors were baffled and did a brain MRI and sent me to physical therapy. After reading a lot and watching online seminars I discovered low T is a common problem after Prostate cancer and Lupron. I would recommend anyone PC get a Testosterone test before treatment to establish a baseline.
Yes I am aware that the gel will give you a more steady dose but the hassle of applying it and risk of being around woman with it was the deciding factor on using the injection.
The testosterone is in an oil base and lasts about 12 days and I can tell when it is wearing off. Yes it is a big long needle but it only hurts briefly when it pierces the outer skin. It is an intramuscular injection and the only time that I ever have any discomfort is when I've missed the muscle or did not purge all the air from the shot.
I am 66 years old and my PSA hovers around .14 most of the time. I do not like giving myself a shot but does not bother me at all anymore.
Did I mention my insurance will not pay for the gel.
Yes I had prostate cancer 2 nodules 4+3 and 3+4 PSA 4.6. Treated with 6 months Lupron and 20 proton sessions. Lupron sucked the life out of me and I was ready for the nursing home.
My doctors were baffled and did a brain MRI and sent me to physical therapy. After reading a lot and watching online seminars I discovered low T is a common problem after Prostate cancer and Lupron. I would recommend anyone PC get a Testosterone test before treatment to establish a baseline.
Yes I am aware that the gel will give you a more steady dose but the hassle of applying it and risk of being around woman with it was the deciding factor on using the injection.
The testosterone is in an oil base and lasts about 12 days and I can tell when it is wearing off. Yes it is a big long needle but it only hurts briefly when it pierces the outer skin. It is an intramuscular injection and the only time that I ever have any discomfort is when I've missed the muscle or did not purge all the air from the shot.
I am 66 years old and my PSA hovers around .14 most of the time. I do not like giving myself a shot but does not bother me at all anymore.
Did I mention my insurance will not pay for the gel.
I had all my T levels from every blood test going back to 2008 along with every PSA test and never got over a 2.9 but still had PC with 4-3 and 3-4 in a 7mm lesion. My Excell medical spread sheet has all the results from all my blood tests. My PSA was 2.3 to 2.9 for over 5 years and I almost considered just watching it except for the 4-3 that I had confirmed at an outside pathology lab. It was the only thing that put me in the unfavorable intermediate risk category as it was only confined to the area of the lesion in my 120-gram prostate and there were only 4 positive cores out of 30 and my low PSA number made me question if I was even a poor risk. Then there is my age of 74. If I live 15 more years that puts me at 89 and I sure don't want to be in a nursing home. Like I said I am going to go back on T after I see my granddaughter in September and see how my PSA responds. With my huge prostate and age that was why I was never worried with a 2.9 PSA until my endocrinologist did the full PSA test.
I had all my T levels from every blood test going back to 2008 along with every PSA test and never got over a 2.9 but still had PC with 4-3 and 3-4 in a 7mm lesion. My Excell medical spread sheet has all the results from all my blood tests. My PSA was 2.3 to 2.9 for over 5 years and I almost considered just watching it except for the 4-3 that I had confirmed at an outside pathology lab. It was the only thing that put me in the unfavorable intermediate risk category as it was only confined to the area of the lesion in my 120-gram prostate and there were only 4 positive cores out of 30 and my low PSA number made me question if I was even a poor risk. Then there is my age of 74. If I live 15 more years that puts me at 89 and I sure don't want to be in a nursing home. Like I said I am going to go back on T after I see my granddaughter in September and see how my PSA responds. With my huge prostate and age that was why I was never worried with a 2.9 PSA until my endocrinologist did the full PSA test.
Most of my blood work is pdf files but can go back to 2000 but
I never had my T levels tested until after my PC treatment.
Just looking at my PSA over the years you can clearly see my path to PC started about 10 years ago. My PC would have been discovered much sooner had they looked at the rate of rise rather than just the number.
I stop taking T for a month before blood work and it is slowly rising on it's own because diet and exercise and loosing 60 Lbs. I am much healthier today than 5 years ago.
I am also unfavorable intermediate risk and my doctor seems to have trouble explaining exactly what that means.
I have never seen an endocrinologist and my urologist prescribes the T. Not sure what you mean by full PSA is that like a 4K Score.
You certainly have all your medical data in good order as it would take me a while to look up all of it.
I am 67 and if I live another 10 years that is probably enough.
Connect
Connect
Like
Helpful
Hug
Bandit 11: Your analysis and choice (for you) makes perfect sense to me.
Best wishes for a good outcome.
My first consultation the Radiologist/Oncologist were recommending hormone treatments. Then they said would not recommend if have cardiovascular issues. I have heart failure so they said no hormone treatment. I was listed as intermediate risks because only 1 of my biopsies was 3+4 all other biopsies were 3+3.
I then had a Decipher test done. It came back as low risk. The original consultation Oncologist then said hormone treatment not recommended only curative radiation. But this provider did not offer proton just photon.
I chose to go to UFPTI which does have proton. So I am one of the ones who did have proton treatments without hormone treatment. I did not want hormone treatments unless absolutely necessary. I am an avid exerciser and would affect this along with being a heart failure patient.
Did you have a Decipher test? I would really recommend it. It gives a more precise diagnosis. Also make sure you get second opinions and not just a single source. There are also many excellent sites to read up on treatments and get professional medical advice which allows you to be an informed patient and be able to question and asked questions.
-
Like -
Helpful -
Hug
4 ReactionsI did a post that gave my experience with this. I also got the suggestion of doing it for a month to see how I feel. Please read my post. I know it is really hard to know what to do and you get so many telling you different things. That is why it is so important to have second opinions and research different treatments. Not one treatment is best for all and really depends on your personal health and specific degree and type of cancer.
I am done with my treatments. I did have the side affects mentioned I would get but none of them required medications or procedures. I did have some mild fatique but was nothing I could not deal with and had subsided now two weeks later. Being an avid bike rider I was not able to ride because of Space/Oar. So when I started back OMG were my legs out of shape and boy did I get sore.
-
Like -
Helpful -
Hug
3 ReactionsMuch appreciated guys... I have always been super sensitive to any drugs and even supplements.
I don't see the upside to feeling horrible for years in my 70's.
I'd rather, pray, kick ass and get a new horse to compete in 50 mile endurance races thru the Sierra Nevada Mountains.
You can't unscramble eggs and I sure don't want to waste the quality of my life on a percentage.
I feel great right now and I can't wait to start working out again after the 2nd biopsy.
Just waiting for the results. Blessings,
-
Like -
Helpful -
Hug
2 ReactionsI just finished the five-treatment proton at Mayo Phoenix. I am two months shy of 74 and I am very similar to you. I had Gleason 4-3 in two cores and Gleason 3-4 in three cores all from the same location of my 120 gm prostate. I had a 30 core MRI fusion guided transperineal biopsy. My PSA was 2.9 and my original MRI showed a 7mm lesion. My three-month post radiation PSA was undetectable. I also did not take the Lupron shot because I had been on TRT since 2008 and when I stop applying the Androgel I go castrate in 60 hours. My radiation oncologist didn't believe me, and he wanted to jab me so bad he could taste it from my opinion before I left the hospital during our initial meeting. He tested me about a month later and I was at 12 ng/dl. All my research shows that ADT makes almost no difference in men over 70 to BCR or overall survival. Why did I stop my testosterone gel? Just hedging my bets, I guess, and I didn't need to take a drug to get the same results. I plan on going back on the TRT in September after visiting my nine-month-old granddaughter. Don't want any testosterone rubbing off on her.
-
Like -
Helpful -
Hug
2 ReactionsBeen on TRT for a little over a year and just take a shot every two weeks.
-
Like -
Helpful -
Hug
1 ReactionDid you have prostate cancer and have you been treated for it? I took the shot one time when I went on a scuba vacation and didn't want the gel to wash off. By the time the two weeks were up the pain from the shot had finally worn off, so I am not a fan of the injections. Another reason is the T levels increase real high right after the injection then fade after the two weeks sort of like a roller coaster ride.
-
Like -
Helpful -
Hug
2 ReactionsYes I had prostate cancer 2 nodules 4+3 and 3+4 PSA 4.6. Treated with 6 months Lupron and 20 proton sessions. Lupron sucked the life out of me and I was ready for the nursing home.
My doctors were baffled and did a brain MRI and sent me to physical therapy. After reading a lot and watching online seminars I discovered low T is a common problem after Prostate cancer and Lupron. I would recommend anyone PC get a Testosterone test before treatment to establish a baseline.
Yes I am aware that the gel will give you a more steady dose but the hassle of applying it and risk of being around woman with it was the deciding factor on using the injection.
The testosterone is in an oil base and lasts about 12 days and I can tell when it is wearing off. Yes it is a big long needle but it only hurts briefly when it pierces the outer skin. It is an intramuscular injection and the only time that I ever have any discomfort is when I've missed the muscle or did not purge all the air from the shot.
I am 66 years old and my PSA hovers around .14 most of the time. I do not like giving myself a shot but does not bother me at all anymore.
Did I mention my insurance will not pay for the gel.
-
Like -
Helpful -
Hug
2 ReactionsI had all my T levels from every blood test going back to 2008 along with every PSA test and never got over a 2.9 but still had PC with 4-3 and 3-4 in a 7mm lesion. My Excell medical spread sheet has all the results from all my blood tests. My PSA was 2.3 to 2.9 for over 5 years and I almost considered just watching it except for the 4-3 that I had confirmed at an outside pathology lab. It was the only thing that put me in the unfavorable intermediate risk category as it was only confined to the area of the lesion in my 120-gram prostate and there were only 4 positive cores out of 30 and my low PSA number made me question if I was even a poor risk. Then there is my age of 74. If I live 15 more years that puts me at 89 and I sure don't want to be in a nursing home. Like I said I am going to go back on T after I see my granddaughter in September and see how my PSA responds. With my huge prostate and age that was why I was never worried with a 2.9 PSA until my endocrinologist did the full PSA test.
-
Like -
Helpful -
Hug
2 ReactionsMost of my blood work is pdf files but can go back to 2000 but
I never had my T levels tested until after my PC treatment.
Just looking at my PSA over the years you can clearly see my path to PC started about 10 years ago. My PC would have been discovered much sooner had they looked at the rate of rise rather than just the number.
I stop taking T for a month before blood work and it is slowly rising on it's own because diet and exercise and loosing 60 Lbs. I am much healthier today than 5 years ago.
I am also unfavorable intermediate risk and my doctor seems to have trouble explaining exactly what that means.
I have never seen an endocrinologist and my urologist prescribes the T. Not sure what you mean by full PSA is that like a 4K Score.
You certainly have all your medical data in good order as it would take me a while to look up all of it.
I am 67 and if I live another 10 years that is probably enough.
-
Like -
Helpful -
Hug
1 Reaction