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....
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.
@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.
@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.
@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 I had surgery . It appeared contained in the prostate. Post op confirmed containment. 6 yrs now zero PSA. No medications no treatments. Surgery was a piece of cake except maybe coming out of anesthesia. catheter was cumbersome to sleep in but that was a piece of cake. Told me to wait 6 weeks to do any lifting but I felt great at 2 weeks. my issue was incontinence and ED. ED was probably fixable but I waited 5 years to work on it. 5ml of trimix fixes it now. I keep my testosterone at 600. Incontinence is my scary spot. Thinking of AUS. But either way I think there are some fixes to normalcy. Not ideal but life can go on.
@bobby1313 I had surgery . It appeared contained in the prostate. Post op confirmed containment. 6 yrs now zero PSA. No medications no treatments. Surgery was a piece of cake except maybe coming out of anesthesia. catheter was cumbersome to sleep in but that was a piece of cake. Told me to wait 6 weeks to do any lifting but I felt great at 2 weeks. my issue was incontinence and ED. ED was probably fixable but I waited 5 years to work on it. 5ml of trimix fixes it now. I keep my testosterone at 600. Incontinence is my scary spot. Thinking of AUS. But either way I think there are some fixes to normalcy. Not ideal but life can go on.
@tuckerp Glad to hear Trimix works after all that time. I got so disgusted with the various pills not working - and then SRT - that I figured I was done…
You may have an edge since you had no SRT which can destroy nerves, but you do give me hope. Gonna ask my doc about it next visit. Thanks!
Phil
My surgeon leaned toward radiation, telling me at 75 that I might be too old, & also sent me to a radiologist.
Given that my parents both lived to be over 100, I wasn't having any of that "you are too old" stuff, & had the surgeon do the surgery. I couldn't be more pleased with the result. Except for 5 tiny bandages, a catheter, & a drain tube that I had to manage for a week, it was as though the surgery NEVER HAPPENED.
@northoftheborder ...thanks... it's just getting closer to my surgery date and I'm freaking out with second thoughts. it's just that one site says one thing...another says diff.....thanks for your thoughts.
@bobby1313 I'm about 10 days away from surgery myself. After talking with many doctors and reading many different sources, I chose surgery. There is not just one correct path, it's complicated. But I'm at peace with my decision and am never looking back. Best of luck to you, guy!!
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 Your story certainly stirred up some painful memories for me.
I also had in depth consultations re: radical prostatectomy and radiation treatment. My docs were very upfront about the pros/cons of each. What made me decide on the surgery was the aggressive state of my cancer. I carry the BRCA2 gene — and tim was of the essence. But a biochemical recurrence doused my good fortune after just 13 months. PSA left the “Undetectable” world and I had to do the radiation hormone therapy. Now, nearly two years after my last radiation treatment, I feel great and turning in those 0.01 PSA labs.
I wish I could offer a definitive answer on which way to go. But I think it just depends on your own situation.
@tuckerp Glad to hear Trimix works after all that time. I got so disgusted with the various pills not working - and then SRT - that I figured I was done…
You may have an edge since you had no SRT which can destroy nerves, but you do give me hope. Gonna ask my doc about it next visit. Thanks!
Phil
@heavyphil I tried the Cialis. 20mg. It did bring back some life during the night but was not helping with sexual arousal. I did try the vacuum pump but I had trouble filling the shaft. The head would fill but not the shaft. Dr said lets try the trimix. He started me on the minimum dose of 5. That worked for about 3 hours. I started getting nervous. 5 units is enough now for about 2.5 hours. Not having an erection for 5 years has caused some shortening of the shaft. Plus the head does not fill as full. The good thing is your good whether you orgasm or not for the 2.5 hours. I am also taking a 5mg Cialis daily. This seems to give it some fullness during the night.
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@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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2 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.
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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.
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Like -
Helpful -
Hug
3 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 Reaction@bobby1313 I had surgery . It appeared contained in the prostate. Post op confirmed containment. 6 yrs now zero PSA. No medications no treatments. Surgery was a piece of cake except maybe coming out of anesthesia. catheter was cumbersome to sleep in but that was a piece of cake. Told me to wait 6 weeks to do any lifting but I felt great at 2 weeks. my issue was incontinence and ED. ED was probably fixable but I waited 5 years to work on it. 5ml of trimix fixes it now. I keep my testosterone at 600. Incontinence is my scary spot. Thinking of AUS. But either way I think there are some fixes to normalcy. Not ideal but life can go on.
-
Like -
Helpful -
Hug
6 Reactions@tuckerp Glad to hear Trimix works after all that time. I got so disgusted with the various pills not working - and then SRT - that I figured I was done…
You may have an edge since you had no SRT which can destroy nerves, but you do give me hope. Gonna ask my doc about it next visit. Thanks!
Phil
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Like -
Helpful -
Hug
1 ReactionMy surgeon leaned toward radiation, telling me at 75 that I might be too old, & also sent me to a radiologist.
Given that my parents both lived to be over 100, I wasn't having any of that "you are too old" stuff, & had the surgeon do the surgery. I couldn't be more pleased with the result. Except for 5 tiny bandages, a catheter, & a drain tube that I had to manage for a week, it was as though the surgery NEVER HAPPENED.
-
Like -
Helpful -
Hug
2 Reactions@bobby1313 I'm about 10 days away from surgery myself. After talking with many doctors and reading many different sources, I chose surgery. There is not just one correct path, it's complicated. But I'm at peace with my decision and am never looking back. Best of luck to you, guy!!
-
Like -
Helpful -
Hug
3 Reactions@climateguy Your story certainly stirred up some painful memories for me.
I also had in depth consultations re: radical prostatectomy and radiation treatment. My docs were very upfront about the pros/cons of each. What made me decide on the surgery was the aggressive state of my cancer. I carry the BRCA2 gene — and tim was of the essence. But a biochemical recurrence doused my good fortune after just 13 months. PSA left the “Undetectable” world and I had to do the radiation hormone therapy. Now, nearly two years after my last radiation treatment, I feel great and turning in those 0.01 PSA labs.
I wish I could offer a definitive answer on which way to go. But I think it just depends on your own situation.
-
Like -
Helpful -
Hug
4 Reactions@heavyphil I tried the Cialis. 20mg. It did bring back some life during the night but was not helping with sexual arousal. I did try the vacuum pump but I had trouble filling the shaft. The head would fill but not the shaft. Dr said lets try the trimix. He started me on the minimum dose of 5. That worked for about 3 hours. I started getting nervous. 5 units is enough now for about 2.5 hours. Not having an erection for 5 years has caused some shortening of the shaft. Plus the head does not fill as full. The good thing is your good whether you orgasm or not for the 2.5 hours. I am also taking a 5mg Cialis daily. This seems to give it some fullness during the night.
-
Like -
Helpful -
Hug
2 Reactions