Conflicted/Confused, any Guidance/Advice out there?

Posted by batsam10 @batsam10, Mar 10 1:03pm

I will be 61 at the end of this month. MRI on August 2022 revealed an area of suspicion measuring 2.2 cm x 1.4 cm within the left transitional zone mid gland base. Impression from Biopsy September 2022 showed 2.2 cm PI-RADS 5 lesion within the left transitional zone mid gland/base with probable extraprotastic extension. 18 cors pulled 3 were cancerous. Gleason score was given 3+3 but my second opinion stated 3+4. Was told low risk and AS is OK.

Second biopsy Jan 2024 for samples revealed 3+3 and 3+4 Gleeson scores. The report came back with 55 mL gland. Redemonstration of PI-RADS 5 lesion in the left anterior transitional zone with probable ECE. My last PSA in Aug. 2023 was 5.7. I was then told I’m no longer low risk but low intermediate unfavorable. I don’t believe there was any big differences that I can understand for the status change. I was scheduled for external beam radiation this week but chickened out after reading the side effects, especially with a bad baseline for bowel symptoms.

If anyone can make some sense of all of this and provide opinions, I would greatly appreciate it. I am trying to make a decision on what treatment to go with. I’m in the Boston area and we have great Hospitals and Doctors but that doesn’t make the decision any easier.

Thanks and best of luck to everyone.

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Tulsa Pro is ablation, but it's different. It can be used to treat just a portion of the glad or the whole thing. There are several types of ablation. Tulsa is similar to HIFU, both use ultra high frequency but HIFU is done through the rectum and uses ultrasound to guide it. Because it's further away from the prostate, it can be difficult to reach all areas of the prostate. Tulsa is done through the urethra, and is cooled to protect the urethra. Since it's in the middle of the prostate, all portions can be abated and it's guided in real time MRI. They avoid the rectum, protect the urethra, no radiation, no cutting, real time guidance. There are negatives. Cost, anesthesia, less evidence. Oh and it can also be used to treat symptoms of BPH (difficulty urinating). In your search you'll find plenty of guys who have had good outcomes with all procedures. To me, it's all about the odds. From what I've seen, side effects from Tulsa are almost zero. And yes, unfortunately, I believe that clinics will steer you towards what they have and what they are most familiar with. Use the internet to do tons of research. It's hard in the beginning, but eventually all of the terms and acronyms will become more familiar. You found a great resource here.

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@batsam10

Thanks for the tip. I did hear of the gel that helps spare your bowel. After doing some research and communicating with this incredible group of guys, I did ask the Dr. about the gel, the type of radiation, and the equipment used to deliver the radiation. I never heard back from him but did hear from him right away when I cancelled my radiation sessions. I’m not insinuating anything here but it does make me wonder if folks are being pushed into services.

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I had 28 session with a full bladder as a requirement. Started Arbiterone at same time. PSA is less than 0.01 now. Got about 4 TRELSTAR shots so far 3 months apart in the butt. Just feel tired a lot. I m 75. In the last quarter of the football game. Lol

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@batsam10

Thanks for posting. Even with all of the support of this great group, It’s still hard choice to make. I’ll be seeing a Rad Onc and Med Onc in two weeks. After that I will need to decide on treatment. Seems like generally the younger group of guys are going for RP. It’s been a nightmare in my head.

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Like I said, my RP went great. I started doing Kegel exercises religiously up until my surgery. I had little pain, spent an overnight in the hospital, and then went home and wore a catheter for 9 days. It really wasn’t that bad. After the catheter was removed, I did Kegels every hour I was awake, and like I said no incontinence.(I am 71 and wasn’t worried about the impotence). As tough as it was to hear, I’m glad it was taken out after hearing the pathology report. My first PSA blood test came back undetectable, and I pray that continues. I’ve made some changes in my diet and continue to exercise everyday, as I have for the past 50 years. I know you’ll make the best decision for you. BTW, if you’re married keep your wife involved. You’ll be thankful you did.

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@batsam10

Thanks for posting. Even with all of the support of this great group, It’s still hard choice to make. I’ll be seeing a Rad Onc and Med Onc in two weeks. After that I will need to decide on treatment. Seems like generally the younger group of guys are going for RP. It’s been a nightmare in my head.

Jump to this post

I believe that if the cancer remains completely within the prostate, the usual course of action is a Radical Prostatectomy. When I was diagnosed at 72 and a half years old, before the Multi Parametric MRI and while awaiting the biopsy results, the Uro Surgeon was prepared for surgery and mentioned the possibility of a Robotic Surgery if the results were favorable. However, in my case, with a Gleason score of 4+4 and the MRI indicating local metastasis, he referred me to a Radio Onco. Therefore, I don't believe that only younger individuals opt for RP. Age certainly plays a role, but if one is generally healthy and the cancer is contained, RP may still be a very viable option.

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@kjacko

Like I said, my RP went great. I started doing Kegel exercises religiously up until my surgery. I had little pain, spent an overnight in the hospital, and then went home and wore a catheter for 9 days. It really wasn’t that bad. After the catheter was removed, I did Kegels every hour I was awake, and like I said no incontinence.(I am 71 and wasn’t worried about the impotence). As tough as it was to hear, I’m glad it was taken out after hearing the pathology report. My first PSA blood test came back undetectable, and I pray that continues. I’ve made some changes in my diet and continue to exercise everyday, as I have for the past 50 years. I know you’ll make the best decision for you. BTW, if you’re married keep your wife involved. You’ll be thankful you did.

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That’s great! I’m glad you had the success that you did. I have started Kegal exercises but need to up my game by doing it more frequently. Good advice on the Mrs. she has been at every appointment and has been extremely supportive. It bothers me greatly about the impotence because we are very active. Glad others have reported returns with erections. Best of luck in your journey with this horrible disease.

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@batsam10

That’s great! I’m glad you had the success that you did. I have started Kegal exercises but need to up my game by doing it more frequently. Good advice on the Mrs. she has been at every appointment and has been extremely supportive. It bothers me greatly about the impotence because we are very active. Glad others have reported returns with erections. Best of luck in your journey with this horrible disease.

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My Kegel routine after RP: 10 fast ones and then immediately 10 more, each with a 4-5 second s was the surgeon’s recommendation. I did that every hour on the hour each hour I was awake. I even set an alarm every hour so I wouldn’t forget if I was caught up in an activity or tv show. Three minutes each hour was a simple sacrifice. 🤞

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@paulcalif

Tulsa Pro is ablation, but it's different. It can be used to treat just a portion of the glad or the whole thing. There are several types of ablation. Tulsa is similar to HIFU, both use ultra high frequency but HIFU is done through the rectum and uses ultrasound to guide it. Because it's further away from the prostate, it can be difficult to reach all areas of the prostate. Tulsa is done through the urethra, and is cooled to protect the urethra. Since it's in the middle of the prostate, all portions can be abated and it's guided in real time MRI. They avoid the rectum, protect the urethra, no radiation, no cutting, real time guidance. There are negatives. Cost, anesthesia, less evidence. Oh and it can also be used to treat symptoms of BPH (difficulty urinating). In your search you'll find plenty of guys who have had good outcomes with all procedures. To me, it's all about the odds. From what I've seen, side effects from Tulsa are almost zero. And yes, unfortunately, I believe that clinics will steer you towards what they have and what they are most familiar with. Use the internet to do tons of research. It's hard in the beginning, but eventually all of the terms and acronyms will become more familiar. You found a great resource here.

Jump to this post

Thanks for the post. I just had my appointment with a center of excellence and the Dr. who does the ablation with TULSA Pro said in his words that I would be an OK candidate not a good one. There was only one area he would be able to treat and said other areas of cancer would be left behind. We had along discussion and he said honestly that I am better off with removal or radiation.

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@ecurb

I had 28 session with a full bladder as a requirement. Started Arbiterone at same time. PSA is less than 0.01 now. Got about 4 TRELSTAR shots so far 3 months apart in the butt. Just feel tired a lot. I m 75. In the last quarter of the football game. Lol

Jump to this post

Glad to hear your PSA is low and that you’re done with the treatments. Wishing you the very best. Keep punching!

REPLY
@samidh

I believe that if the cancer remains completely within the prostate, the usual course of action is a Radical Prostatectomy. When I was diagnosed at 72 and a half years old, before the Multi Parametric MRI and while awaiting the biopsy results, the Uro Surgeon was prepared for surgery and mentioned the possibility of a Robotic Surgery if the results were favorable. However, in my case, with a Gleason score of 4+4 and the MRI indicating local metastasis, he referred me to a Radio Onco. Therefore, I don't believe that only younger individuals opt for RP. Age certainly plays a role, but if one is generally healthy and the cancer is contained, RP may still be a very viable option.

Jump to this post

Agreed, my comment was only from most of the guys I have spoken with and the great guys in this group seem to be on the younger scale for RP. I am also learning it depends on many variables for each individual case regardless of age. I ‘m still having difficulty choosing a treatment but have a better understanding of the various therapies now. I wish you the very best of luck with everything.

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@batsam10

Glad to hear your PSA is low and that you’re done with the treatments. Wishing you the very best. Keep punching!

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My approach is; exercise 4x a week.treadmill, lift light weights, drink Assam tea, eat lots of mushrooms, salads, fruits = weight control.....my last RT was MARCH 2023.

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