You're getting a lot of good feedback here so I won't repeat what others have said, but I was in your shoes a few months ago having to decide between surgery and radiation. At that time my diagnosis was similar to yours with Gleason 3+4=7 and contained within the prostate. I was leaning towards radiation but decided to get a second opinion at a center of excellence. That second opinion came back with additional diagnosis of seminal vesicle invasion and they said surgery wouldn't be sufficient, so I was recommended radiation along with ADT. So the choice was easier for me. Hopefully you don't experience the same situation of a worse diagnosis, but I would just echo others recommendation of a second opinion, preferably from a well-known center of excellence. I'm also much more comfortable with my current doctor and cancer center and very glad I decided to get that second opinion.
Since my diagnosis, and as word got around, I've had several guys reach out to me who have had PC with encouragement. As it turned out, most had similar situations (Gleason 6 or 7, contained in prostate) but some chose surgery and some radiation. All are doing well with no recurrence after several years and none have had serious side effects. That's certainly anecdotal and a very small sample size, so I'm not suggesting that will necessarily be your experience. My point is that you can have favorable outcomes regardless of what you choose and as was mentioned above, the survival rate is about the same. But I believe it is more important WHO and WHERE you choose to have your procedure done as opposed to which route you take.
You're on the right path of trying to get yourself educated as best as possible. As someone mentioned above, once you make your choice, know you did so with the best information you had and don't look back! Best of luck, you got this!
Look at the YOU-TUBE video produced by the PCRI.org non-profit, They are at arms length in their productions
Brachytherapy 101. The optimal dose of radiation is by implanting 'permanent seeds. The contained radiation source dissipate over weeks or months. The titanium seed remain inert afterwards. It is misnamed as low dose
because over time it is the highest.
Repeat radiation depends on the type you had the first time. According to my radiation oncologist, I'd be allowed to have radiation to the same spot in my spine a second time if I ever needed it.
That's interesting about the prostate sometimes repairing itself after radiation. Maybe just low doses or highly-focussed radiation (like proton beam)? And presumably, a self-repaired prostate would be easier to remove, since it would no longer be hard and rubbery, no? I still have only dry orgasms, which suggests to me that my prostate hasn't repaired itself yet 3½ years after 60 gy of radiation, but I have no special expertise to evaluate.
@northoftheborder interesting. I thought everyone that had radiation or surgery had dry orgasms. I guess it makes sense that radiation might leave that possibility.
@davederousseau Did you have any great issue with urinary side effects after surgery? I worry that I may be in the 5% that experience this as a more longer term issue.
@diveinnow
After the catheter was removed on 17 Oct, I was constantly leaking (drops and dribbles, no heavy flows) for about 2 days when standing or walking. No leaks at night. Up 2x at night to go for first week or so. Gradually improved to some leaks throughout the day. Some days felt like constant drops, which was frustrating. Could not figure out why it was inconsistent improvement. Evenings are still sometimes worse.
Doc says that is normal. He did not ask for any weighing or measuring of amounts as others have talked bout here. 3 pads per day on average, with some more full, depending on level and type of activity. I change pads for confort and cleanliness, usually not fulness. Others on the forum have complained of inconsistent improvement as well. Doing kegels every day. No pain when urinating, just some discomfort for 2 weeks or so after catheter removal. I did not stop drinking coffee and now as of Dec, will have an occasional beer or wine I want my body to adjust to what is normal for me. Those things add to quality of life for me. Still seeing gradual improvement. Doc said that approach is fine. Moderation in that and working back to full heavy activity levels. Body has to heal. So I may be slowing my recovery some, but as long as I see improvements I am happy.
So, no great issues. I expected the leakage, but had hoped for none. Seeing gradual improvement. Its only early Dec, so less than 2 months since catheter out. Not sure where I fall in the percentages when it comes to recovery, but doc says what I am seeing has been the norm for many of their patients. He did say he thinks the percentages are a bit higher, with some men embarrassed to talk about their leaking and pad or incontinence underwear use. I wouldn't worry too much about where you will be in the percentages. If the treatment is right for your situation to give you the best results and options, you can tackle post-procedure issues when they arise. Best to you. Dave
@bobby1313
My focus, with a gleason of 3+4 and a 10.2 PSA, given we all look for "cure", was side effects and quality of life. I looked at ALL options with those two criteria in mind. I chose a radiation machine, the Mridian, with a built in MRI, one of two brands on the market. My treatment, completed in February of 2023, was painless with no catheters or hormone treatment. My only side effect was a slight urine restriction after the third treatment which Flomax took care of. To this day, I have no restrictions physically, due to my treatment.
@northoftheborder interesting. I thought everyone that had radiation or surgery had dry orgasms. I guess it makes sense that radiation might leave that possibility.
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..
@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 It seems you are most concerned about the prospect of surgery. I was in the same boat and wanted to do radiation to avoid it and went nuts consuming ever more information.
If you are relatively young snd healthy, I believe that most people would opt for surgery with a Gleason 7 that is clearly confined to the prostate. Make sure to go to a center of excellence or a high volume center and ask the surgeon about their statistics regarding ED and incontinence.
The surgery itself is nothing to ve afraid of. You will only have minimal discomfort for a couple of days and the thing that will bother you most will be the catheter. There will likely be some incontience for a few weeks and ED for months. But next to nothing in terms of pain or restrictions on daily activities.
Knowing what questions to ask is key
Check out book You can beat prostate cancer by Marckini
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1 ReactionYou're getting a lot of good feedback here so I won't repeat what others have said, but I was in your shoes a few months ago having to decide between surgery and radiation. At that time my diagnosis was similar to yours with Gleason 3+4=7 and contained within the prostate. I was leaning towards radiation but decided to get a second opinion at a center of excellence. That second opinion came back with additional diagnosis of seminal vesicle invasion and they said surgery wouldn't be sufficient, so I was recommended radiation along with ADT. So the choice was easier for me. Hopefully you don't experience the same situation of a worse diagnosis, but I would just echo others recommendation of a second opinion, preferably from a well-known center of excellence. I'm also much more comfortable with my current doctor and cancer center and very glad I decided to get that second opinion.
Since my diagnosis, and as word got around, I've had several guys reach out to me who have had PC with encouragement. As it turned out, most had similar situations (Gleason 6 or 7, contained in prostate) but some chose surgery and some radiation. All are doing well with no recurrence after several years and none have had serious side effects. That's certainly anecdotal and a very small sample size, so I'm not suggesting that will necessarily be your experience. My point is that you can have favorable outcomes regardless of what you choose and as was mentioned above, the survival rate is about the same. But I believe it is more important WHO and WHERE you choose to have your procedure done as opposed to which route you take.
You're on the right path of trying to get yourself educated as best as possible. As someone mentioned above, once you make your choice, know you did so with the best information you had and don't look back! Best of luck, you got this!
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Helpful -
Hug
5 ReactionsLook at the YOU-TUBE video produced by the PCRI.org non-profit, They are at arms length in their productions
Brachytherapy 101. The optimal dose of radiation is by implanting 'permanent seeds. The contained radiation source dissipate over weeks or months. The titanium seed remain inert afterwards. It is misnamed as low dose
because over time it is the highest.
-
Like -
Helpful -
Hug
1 Reaction@northoftheborder interesting. I thought everyone that had radiation or surgery had dry orgasms. I guess it makes sense that radiation might leave that possibility.
@diveinnow
After the catheter was removed on 17 Oct, I was constantly leaking (drops and dribbles, no heavy flows) for about 2 days when standing or walking. No leaks at night. Up 2x at night to go for first week or so. Gradually improved to some leaks throughout the day. Some days felt like constant drops, which was frustrating. Could not figure out why it was inconsistent improvement. Evenings are still sometimes worse.
Doc says that is normal. He did not ask for any weighing or measuring of amounts as others have talked bout here. 3 pads per day on average, with some more full, depending on level and type of activity. I change pads for confort and cleanliness, usually not fulness. Others on the forum have complained of inconsistent improvement as well. Doing kegels every day. No pain when urinating, just some discomfort for 2 weeks or so after catheter removal. I did not stop drinking coffee and now as of Dec, will have an occasional beer or wine I want my body to adjust to what is normal for me. Those things add to quality of life for me. Still seeing gradual improvement. Doc said that approach is fine. Moderation in that and working back to full heavy activity levels. Body has to heal. So I may be slowing my recovery some, but as long as I see improvements I am happy.
So, no great issues. I expected the leakage, but had hoped for none. Seeing gradual improvement. Its only early Dec, so less than 2 months since catheter out. Not sure where I fall in the percentages when it comes to recovery, but doc says what I am seeing has been the norm for many of their patients. He did say he thinks the percentages are a bit higher, with some men embarrassed to talk about their leaking and pad or incontinence underwear use. I wouldn't worry too much about where you will be in the percentages. If the treatment is right for your situation to give you the best results and options, you can tackle post-procedure issues when they arise. Best to you. Dave
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3 ReactionsI don't understand the aversion to surgery. See my related post at https://connect.mayoclinic.org/comment/1452204/
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2 Reactions@bobby1313
My focus, with a gleason of 3+4 and a 10.2 PSA, given we all look for "cure", was side effects and quality of life. I looked at ALL options with those two criteria in mind. I chose a radiation machine, the Mridian, with a built in MRI, one of two brands on the market. My treatment, completed in February of 2023, was painless with no catheters or hormone treatment. My only side effect was a slight urine restriction after the third treatment which Flomax took care of. To this day, I have no restrictions physically, due to my treatment.
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2 Reactions@tuckerp It depends upon whether the seminal vesicles have been removed or destroyed.
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3 ReactionsAfter 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..
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7 Reactions@bobby1313 It seems you are most concerned about the prospect of surgery. I was in the same boat and wanted to do radiation to avoid it and went nuts consuming ever more information.
If you are relatively young snd healthy, I believe that most people would opt for surgery with a Gleason 7 that is clearly confined to the prostate. Make sure to go to a center of excellence or a high volume center and ask the surgeon about their statistics regarding ED and incontinence.
The surgery itself is nothing to ve afraid of. You will only have minimal discomfort for a couple of days and the thing that will bother you most will be the catheter. There will likely be some incontience for a few weeks and ED for months. But next to nothing in terms of pain or restrictions on daily activities.
-
Like -
Helpful -
Hug
2 Reactions