I did the MRI and found that i have cancer. The cancer is still in the prostate and has not spread. PI- RADS 2- assessment 4. and going to do a biopsy. The cancer has not left the prostate and the research i have done is to take it out or have radiation done. I don't know if one is better than the other. The radiation does not work it is hard to do a surgery. Both ways will stop you from having sex?
After seeing a community urologist for interpretation of my rising PSA and getting an MRI and a PET scan, I made a decision to get surgery. This 1st opinion guy made an appointment for me to see a radiation oncologist to make sure I heard the case for radiation. For a second opinion I saw a urologist at an NCI designated cancer facility. Both of these urologists presented the surgery/radiation decision as my choice. They said the outlook would be very similar either way.
The 2nd opinion doc booked an appointment for surgery, but he spent some time making sure I was convinced that I would consult the radiation oncologist that he was going to refer me to.
Then I read his clinical note. He wrote, in bold type, that despite his recommendation, I had chosen surgery.
I couldn't understand why he didn't tell me this to my face. I lost my trust in this doc, and told him so. I said I needed a doc who would level with me.
I re-read both urologists clinical notes. In the 1st opinion clinical note I now saw that although this doc had cheerfully agreed to do surgery, he predicted a "multimodal" approach might eventually be required. Given that the 2nd opinion doc had recommended radiation in writing, I decided that I would see several radiation oncologists with a very open mind, instead of going to these RO appointments because a surgeon wanted me to check a box.
I guessed that although the surgeons had no positive evidence my cancer had metastacized beyond the criteria acceptable for surgery and hence had booked surgery, they were not confident of success, i.e. cure. A point both ROs made was if you get surgery and it fails to cure, you will then do RT, and consequently you get to experience the side effects of both types of treatments. If you do RT alone, you just get RT side effects. I decided to get RT.
I don't regret the decision to not do surgery. But, I felt, after agreeing to 20 days of EBRT and 2 years of ADT, that I was not fully informed about my choice of what type of RT to get. I have told the RO who came up with the treatment plan that I would like a referral to a doc with extensive experience with brachytherapy boost, i.e. 20 days of EBRT + ADT + brachytherapy boost. No one had mentioned brachytherapy to me in any of the consultations I had had.
So, welcome to the rabbit hole that choosing a treatment for prostate cancer is. I keep hoping that at some point I'll be comfortable with my choices and I can try to resume some sort of normal life that isn't oriented almost completely around navigating through a fog of information I know I do not fully understand, in an effort to make very serious decisions that will affect me for the rest of my life..
@climateguy hello... you've gone through much of what I'm going through now. I've had all the tests..starting with psa... ultrasounds... biopsies..my doctor told me I've got stage 2b prostate cancer. In his opinion surgery was my best choice. However I've been researching all of the treatment options... including proton .. photon..brachy seeds....but now I'm going for 2nd opinion at Vanderbilt hospital...my biggest concern about radiation is the possibility of damage to other tissue and organs. My biggest concern about surgery is the pain,the catheter...so as I said, I'm going to see another urologist soon to weigh the options.. i just don't know... I've also heard that if I choose radiation first and it doesn't work or cancer comes back that the risks for surgery becomes a lot higher. But if surgery fails I would still have options for radiation therapy.... I'm just going crazy stressing about this. I had 12 biopsies .... Gleason scores of 6and 7s... Grade group 1 and 2s...so anyways...thanks for your input....
I did the MRI and found that i have cancer. The cancer is still in the prostate and has not spread. PI- RADS 2- assessment 4. and going to do a biopsy. The cancer has not left the prostate and the research i have done is to take it out or have radiation done. I don't know if one is better than the other. The radiation does not work it is hard to do a surgery. Both ways will stop you from having sex?
Actually, after radiation, most people can have sex for at least a couple years before they start to lose their erection. After surgery, if they can save the nerves people usually get back the ability to get an erection..
The biggest problem is most people are put on ADT and once you’re put on that you lose the desire for sex.
After the biopsy, if you have a Gleason score of 3+4 or more, You want to get a PSMA pet scan so you can see if the cancer has spread anywhere else in your body.
What you decide on can depend on your age and the extent of your cancer. Hard to say now, what would be best because you need that biopsy and the pet scan To really know where you are. Your doctor will probably offer you to do either treatment . You Definitely want to speak to a urologist and a radiation oncologist to see what they think.
Long-term the results are the same, But as you now have knowledge about it, if you have surgery and it comes back, you can have radiation. It doesn’t work quite as easily the other way around.
I had surgery at 62 16 years ago. It has come back four times but I’m still around and you would never know looking at me that I have anything wrong. Prostate cancer grows very slowly and people usually die of something else, if they have it.
I did the MRI and found that i have cancer. The cancer is still in the prostate and has not spread. PI- RADS 2- assessment 4. and going to do a biopsy. The cancer has not left the prostate and the research i have done is to take it out or have radiation done. I don't know if one is better than the other. The radiation does not work it is hard to do a surgery. Both ways will stop you from having sex?
I'm at a similar place. (MRI with pirads 4. Just had a biopsy and waiting on results.) My understanding is that we don't have an actual cancer diagnosis with just the MRI. It takes a biopsy to confirm a diagnosis. At least that's what I've been told.
After seeing a community urologist for interpretation of my rising PSA and getting an MRI and a PET scan, I made a decision to get surgery. This 1st opinion guy made an appointment for me to see a radiation oncologist to make sure I heard the case for radiation. For a second opinion I saw a urologist at an NCI designated cancer facility. Both of these urologists presented the surgery/radiation decision as my choice. They said the outlook would be very similar either way.
The 2nd opinion doc booked an appointment for surgery, but he spent some time making sure I was convinced that I would consult the radiation oncologist that he was going to refer me to.
Then I read his clinical note. He wrote, in bold type, that despite his recommendation, I had chosen surgery.
I couldn't understand why he didn't tell me this to my face. I lost my trust in this doc, and told him so. I said I needed a doc who would level with me.
I re-read both urologists clinical notes. In the 1st opinion clinical note I now saw that although this doc had cheerfully agreed to do surgery, he predicted a "multimodal" approach might eventually be required. Given that the 2nd opinion doc had recommended radiation in writing, I decided that I would see several radiation oncologists with a very open mind, instead of going to these RO appointments because a surgeon wanted me to check a box.
I guessed that although the surgeons had no positive evidence my cancer had metastacized beyond the criteria acceptable for surgery and hence had booked surgery, they were not confident of success, i.e. cure. A point both ROs made was if you get surgery and it fails to cure, you will then do RT, and consequently you get to experience the side effects of both types of treatments. If you do RT alone, you just get RT side effects. I decided to get RT.
I don't regret the decision to not do surgery. But, I felt, after agreeing to 20 days of EBRT and 2 years of ADT, that I was not fully informed about my choice of what type of RT to get. I have told the RO who came up with the treatment plan that I would like a referral to a doc with extensive experience with brachytherapy boost, i.e. 20 days of EBRT + ADT + brachytherapy boost. No one had mentioned brachytherapy to me in any of the consultations I had had.
So, welcome to the rabbit hole that choosing a treatment for prostate cancer is. I keep hoping that at some point I'll be comfortable with my choices and I can try to resume some sort of normal life that isn't oriented almost completely around navigating through a fog of information I know I do not fully understand, in an effort to make very serious decisions that will affect me for the rest of my life..
@climateguy
It is hard when told you have PC to know what to do. You also can get overwhelmed with information from others and then like you posted conflicting information from medical professionals.
I don't think I saw you were given information on proton radiation. They have pencil beam and scatter beam treatments that have the same success rates of photon radiation. The difference is possible reduction of secondary damaged, and secondary cancers caused to surrounding organs and tissues that photon can have a higher chance than proton.
The biggest difference in the types of radiation is not success rates but photon radiation continues throughout body where proton stops at specific spot.
I still ponder if I made right decision on dosage. I had consultations with Mayo urologist, Mayo R/O, UFHTPI R/O, and my Mayo PCP. I went through the complete prostate cancer information package given to me by UFHPTI prior to considering coming to them for second opinion.
I sometimes ponder whether should have gotten the 5 days high dose versus the 30 low dose I got just to get it over quicker. Put then my Mayo PCP and UFHPTI told me after the 5 high dose treatments started they were seeing more side affects sooner.
I hated to be told I had PC and it did change my life. But I feel I did everything I could to find out all treatment plans and the pros and cons of each. I don't think I could have done more so I have accepted did the right for me personally.
I did not see from your post that you had a Decipher test. Did you have that test.
I did the MRI and found that i have cancer. The cancer is still in the prostate and has not spread. PI- RADS 2- assessment 4. and going to do a biopsy. The cancer has not left the prostate and the research i have done is to take it out or have radiation done. I don't know if one is better than the other. The radiation does not work it is hard to do a surgery. Both ways will stop you from having sex?
@jnj
The biopsies will give you Gleason Score and risk level. Asked your doctors about the Decipher test which is genetic test to determine your risk level which is much more accurate than Decipher which can be subjective.
Radiation will not stop you from having sex. The ability to have erections for sex is a individual one with some having serious problems, some minor, etc. I had 30 rounds of proton radiation. The affects of hormone treatments have much more effect on your sex life than radiation will.
Even if you get ED there are many medical prescriptions to help with ED along with medical procedures and devices if needed.
Please know in today's treatments many many new things have been develop to address both radiation and RP treatments along with if you have ADT which I did not.
It is why I brought up the Decipher test to you. Originally my Gleason score indicated radiation and hormone treatment plan as was classified as intermediate risk. I had the Decipher test (Mayo R/O recommended it) and it came back low risk. That removed the need for hormone treatments and I had radiation only.
@climateguy
It is hard when told you have PC to know what to do. You also can get overwhelmed with information from others and then like you posted conflicting information from medical professionals.
I don't think I saw you were given information on proton radiation. They have pencil beam and scatter beam treatments that have the same success rates of photon radiation. The difference is possible reduction of secondary damaged, and secondary cancers caused to surrounding organs and tissues that photon can have a higher chance than proton.
The biggest difference in the types of radiation is not success rates but photon radiation continues throughout body where proton stops at specific spot.
I still ponder if I made right decision on dosage. I had consultations with Mayo urologist, Mayo R/O, UFHTPI R/O, and my Mayo PCP. I went through the complete prostate cancer information package given to me by UFHPTI prior to considering coming to them for second opinion.
I sometimes ponder whether should have gotten the 5 days high dose versus the 30 low dose I got just to get it over quicker. Put then my Mayo PCP and UFHPTI told me after the 5 high dose treatments started they were seeing more side affects sooner.
I hated to be told I had PC and it did change my life. But I feel I did everything I could to find out all treatment plans and the pros and cons of each. I don't think I could have done more so I have accepted did the right for me personally.
I did not see from your post that you had a Decipher test. Did you have that test.
@jc76 They are going to do a decipher test. They are also having their own pathologist review the biopsy pathology. So the treatment plan may change somewhat, depending. Any plan would include some time on ADT.
I did the MRI and found that i have cancer. The cancer is still in the prostate and has not spread. PI- RADS 2- assessment 4. and going to do a biopsy. The cancer has not left the prostate and the research i have done is to take it out or have radiation done. I don't know if one is better than the other. The radiation does not work it is hard to do a surgery. Both ways will stop you from having sex?
Note that an MRI only indicates the probability of having prostate cancer, and indicates that probability by assigning a PIRADS score (1 - 5). An MRI-guided fusion biopsy needs to be performed for a definitive prostate cancer diagnosis.
A PIRADS 2 means that it is unlikely that clinically significant prostate cancer is present.
Typically, a biopsy is not performed for a PIRADS 2, but it will be done if requested.
Depending on whether or not the biopsy finds prostate cancer, you’ll have a number of options to choose from.
You’re thinking about treatments way too soon. However, IF you do have prostate cancer, and IF you do choose external radiation as initial treatment, and IF you do have a recurrence (that’s a lot if IFs),
choice of salvage treatment would depend on the nature of the recurrence; there are other salvage options preferable to surgery - focal therapy (e.g., cryo), brachytherapy, SBRT, and yes even re-radiation in some cases.
(I had 28 sessions of proton radiation + SpaceOAR Vue + 6 months of Eligard with no impact on sex life. There are precautions that can be taken to minimize the risk.)
@climateguy hello... you've gone through much of what I'm going through now. I've had all the tests..starting with psa... ultrasounds... biopsies..my doctor told me I've got stage 2b prostate cancer. In his opinion surgery was my best choice. However I've been researching all of the treatment options... including proton .. photon..brachy seeds....but now I'm going for 2nd opinion at Vanderbilt hospital...my biggest concern about radiation is the possibility of damage to other tissue and organs. My biggest concern about surgery is the pain,the catheter...so as I said, I'm going to see another urologist soon to weigh the options.. i just don't know... I've also heard that if I choose radiation first and it doesn't work or cancer comes back that the risks for surgery becomes a lot higher. But if surgery fails I would still have options for radiation therapy.... I'm just going crazy stressing about this. I had 12 biopsies .... Gleason scores of 6and 7s... Grade group 1 and 2s...so anyways...thanks for your input....
@bobby1313 My stage is Grade Group III, Gleason 4+3 =7, c3Tb. "b", because seminal vesicles are involved.
I wasn't that worried about the side effects of surgery. But my case is more advanced than yours. My preference was to do nothing, i.e. active surveillance, but that wasn't an option.
I had to pick something. Surgery seemed preferable to radiation to me. I don't really know why.
I didn't understand much about radiation when I thought I had picked surgery. After I tuned in to what radiation oncologists are doing I felt a lot more optimistic about my chances. The main reason I hated the idea of radiation was the ADT, and I still hate the idea of ADT. But I don't regret forgetting about surgery.
Your case almost sounds like your choice is between active surveillance and surgery or radiation.
I did the MRI and found that i have cancer. The cancer is still in the prostate and has not spread. PI- RADS 2- assessment 4. and going to do a biopsy. The cancer has not left the prostate and the research i have done is to take it out or have radiation done. I don't know if one is better than the other. The radiation does not work it is hard to do a surgery. Both ways will stop you from having sex?
You are early in the process, and you will know a lot more once you get the biopsy done. Surgery and radiation are not your only options for mild or intermediate risk cancer. There are focal therapies. I chose Tulsa Pro at Mayo in 2024 due to the low risk of side effects.
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I did the MRI and found that i have cancer. The cancer is still in the prostate and has not spread. PI- RADS 2- assessment 4. and going to do a biopsy. The cancer has not left the prostate and the research i have done is to take it out or have radiation done. I don't know if one is better than the other. The radiation does not work it is hard to do a surgery. Both ways will stop you from having sex?
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Helpful -
Hug
1 Reaction@climateguy hello... you've gone through much of what I'm going through now. I've had all the tests..starting with psa... ultrasounds... biopsies..my doctor told me I've got stage 2b prostate cancer. In his opinion surgery was my best choice. However I've been researching all of the treatment options... including proton .. photon..brachy seeds....but now I'm going for 2nd opinion at Vanderbilt hospital...my biggest concern about radiation is the possibility of damage to other tissue and organs. My biggest concern about surgery is the pain,the catheter...so as I said, I'm going to see another urologist soon to weigh the options.. i just don't know... I've also heard that if I choose radiation first and it doesn't work or cancer comes back that the risks for surgery becomes a lot higher. But if surgery fails I would still have options for radiation therapy.... I'm just going crazy stressing about this. I had 12 biopsies .... Gleason scores of 6and 7s... Grade group 1 and 2s...so anyways...thanks for your input....
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Like -
Helpful -
Hug
2 ReactionsActually, after radiation, most people can have sex for at least a couple years before they start to lose their erection. After surgery, if they can save the nerves people usually get back the ability to get an erection..
The biggest problem is most people are put on ADT and once you’re put on that you lose the desire for sex.
After the biopsy, if you have a Gleason score of 3+4 or more, You want to get a PSMA pet scan so you can see if the cancer has spread anywhere else in your body.
What you decide on can depend on your age and the extent of your cancer. Hard to say now, what would be best because you need that biopsy and the pet scan To really know where you are. Your doctor will probably offer you to do either treatment . You Definitely want to speak to a urologist and a radiation oncologist to see what they think.
Long-term the results are the same, But as you now have knowledge about it, if you have surgery and it comes back, you can have radiation. It doesn’t work quite as easily the other way around.
I had surgery at 62 16 years ago. It has come back four times but I’m still around and you would never know looking at me that I have anything wrong. Prostate cancer grows very slowly and people usually die of something else, if they have it.
-
Like -
Helpful -
Hug
3 ReactionsI'm at a similar place. (MRI with pirads 4. Just had a biopsy and waiting on results.) My understanding is that we don't have an actual cancer diagnosis with just the MRI. It takes a biopsy to confirm a diagnosis. At least that's what I've been told.
-
Like -
Helpful -
Hug
3 Reactions@climateguy
It is hard when told you have PC to know what to do. You also can get overwhelmed with information from others and then like you posted conflicting information from medical professionals.
I don't think I saw you were given information on proton radiation. They have pencil beam and scatter beam treatments that have the same success rates of photon radiation. The difference is possible reduction of secondary damaged, and secondary cancers caused to surrounding organs and tissues that photon can have a higher chance than proton.
The biggest difference in the types of radiation is not success rates but photon radiation continues throughout body where proton stops at specific spot.
I still ponder if I made right decision on dosage. I had consultations with Mayo urologist, Mayo R/O, UFHTPI R/O, and my Mayo PCP. I went through the complete prostate cancer information package given to me by UFHPTI prior to considering coming to them for second opinion.
I sometimes ponder whether should have gotten the 5 days high dose versus the 30 low dose I got just to get it over quicker. Put then my Mayo PCP and UFHPTI told me after the 5 high dose treatments started they were seeing more side affects sooner.
I hated to be told I had PC and it did change my life. But I feel I did everything I could to find out all treatment plans and the pros and cons of each. I don't think I could have done more so I have accepted did the right for me personally.
I did not see from your post that you had a Decipher test. Did you have that test.
-
Like -
Helpful -
Hug
2 Reactions@jnj
The biopsies will give you Gleason Score and risk level. Asked your doctors about the Decipher test which is genetic test to determine your risk level which is much more accurate than Decipher which can be subjective.
Radiation will not stop you from having sex. The ability to have erections for sex is a individual one with some having serious problems, some minor, etc. I had 30 rounds of proton radiation. The affects of hormone treatments have much more effect on your sex life than radiation will.
Even if you get ED there are many medical prescriptions to help with ED along with medical procedures and devices if needed.
Please know in today's treatments many many new things have been develop to address both radiation and RP treatments along with if you have ADT which I did not.
It is why I brought up the Decipher test to you. Originally my Gleason score indicated radiation and hormone treatment plan as was classified as intermediate risk. I had the Decipher test (Mayo R/O recommended it) and it came back low risk. That removed the need for hormone treatments and I had radiation only.
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Like -
Helpful -
Hug
2 Reactions@jc76 They are going to do a decipher test. They are also having their own pathologist review the biopsy pathology. So the treatment plan may change somewhat, depending. Any plan would include some time on ADT.
-
Like -
Helpful -
Hug
3 ReactionsNote that an MRI only indicates the probability of having prostate cancer, and indicates that probability by assigning a PIRADS score (1 - 5). An MRI-guided fusion biopsy needs to be performed for a definitive prostate cancer diagnosis.
A PIRADS 2 means that it is unlikely that clinically significant prostate cancer is present.
Typically, a biopsy is not performed for a PIRADS 2, but it will be done if requested.
Depending on whether or not the biopsy finds prostate cancer, you’ll have a number of options to choose from.
You’re thinking about treatments way too soon. However, IF you do have prostate cancer, and IF you do choose external radiation as initial treatment, and IF you do have a recurrence (that’s a lot if IFs),
choice of salvage treatment would depend on the nature of the recurrence; there are other salvage options preferable to surgery - focal therapy (e.g., cryo), brachytherapy, SBRT, and yes even re-radiation in some cases.
(I had 28 sessions of proton radiation + SpaceOAR Vue + 6 months of Eligard with no impact on sex life. There are precautions that can be taken to minimize the risk.)
-
Like -
Helpful -
Hug
2 Reactions@bobby1313 My stage is Grade Group III, Gleason 4+3 =7, c3Tb. "b", because seminal vesicles are involved.
I wasn't that worried about the side effects of surgery. But my case is more advanced than yours. My preference was to do nothing, i.e. active surveillance, but that wasn't an option.
I had to pick something. Surgery seemed preferable to radiation to me. I don't really know why.
I didn't understand much about radiation when I thought I had picked surgery. After I tuned in to what radiation oncologists are doing I felt a lot more optimistic about my chances. The main reason I hated the idea of radiation was the ADT, and I still hate the idea of ADT. But I don't regret forgetting about surgery.
Your case almost sounds like your choice is between active surveillance and surgery or radiation.
-
Like -
Helpful -
Hug
1 ReactionYou are early in the process, and you will know a lot more once you get the biopsy done. Surgery and radiation are not your only options for mild or intermediate risk cancer. There are focal therapies. I chose Tulsa Pro at Mayo in 2024 due to the low risk of side effects.
-
Like -
Helpful -
Hug
3 Reactions