Newly diagnosed and looking for treatment advice.

Posted by quaddick @quaddick, Sep 23 12:19pm

Hi, everyone. I’m 66 years old and am newly diagnosed with prostate cancer. I currently have no continence or erectile dysfunction, I take no medications, and am healthy otherwise. I haven’t decided on a treatment yet. My cancer is localized to the gland and is low intermediate risk (3+4), so my options range from active surveillance to RP. I’d prefer a one and done treatment, and after lots of online research, I’m leaning towards SBRT. I’d like to avoid ADT if possible, but am worried by my high risk Decipher score of 0.81.
Also, I’ve heard of the Prostox test for predicting urinary problems years down the line from SBRT and IMRT. My radiation oncologist is reluctant to order it for me, because it’s not yet vetted by the FDA. From what I can gather, it’s a legitimate test and Dr. Scholz of the Prostate Cancer Research Institute(many of you are probably aware of PCRI- excellent you tube channel) has positive things to say about it. I am sexually active and still enjoy it, but I am more worried by chronic incontinence as I enjoy lots of outdoor activities.
I would appreciate advice from this community before I make a decision.
Thanks!

My stats:
>PSA 13 bounces up down between 9 and 14 for last few years
>MRI: A 2.2 cm PI-RADS 5 lesion posterior lateral left peripheral zone at the mid gland. An additional
0.6 cm PI-RADS 3 lesion right lateral peripheral zone at the mid gland. No pelvic metastatic disease
findings
>targeted biopsy report: A. Prostate, lesion 1, biopsy: Adenocarcinoma of the prostate, Grade Group 2
(Gleason Score 3+4 = 7/10), in 3 of 3 cores, involving 45% of needle core by volume, Gleason pattern
4 comprises 15% of tumor volume. Perineural invasion is identified. B. Prostate, lesion 2, biopsy:
Adenocarcinoma of the prostate, Grade Group 1 (Gleason Score 3+3 = 6/10), in 1 of 3 cores, involving
5% of needle core by volume. Perineural invasion is not identified.
>Psma pet scan: Mildly tracer avid prostate malignancy. No definite tracer avid nodal or distant
metastases. Clinical stage T1c
>Decipher score .81 high risk

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

At 65y, I had localized prostate cancer, PSA of 7.976, PIRADS 5, and Gleason 7(4+3).

After spending much time analyzing all treatment options and interviewing specialists, my choices came down to (1) proton, (2) IMRT, (3) SBRT, & a distant (4) surgery.

I chose 28 sessions of proton beam radiation + 6 months of Eligard.

We discussed what we would do if I had a localized recurrence, and depending on the nature of the recurrence, there would be choices of: focal therapy (e.g., cryo), brachytherapy, SBRT, and yes even re-radiation (since we were using SpaceOAR). Surgery would be a last (nuclear) option for salvage treatment just as it was for initial treatment.

There is rarely a “one and done treatment” for prostate cancer so, I wouldn’t focus on that too much.

My 28 Proton radiation treatments + 6 months of hormone therapy had no impact on sexual activity, incontinence, or outdoor activities.

Good luck with your decision.

REPLY
Profile picture for brianjarvis @brianjarvis

At 65y, I had localized prostate cancer, PSA of 7.976, PIRADS 5, and Gleason 7(4+3).

After spending much time analyzing all treatment options and interviewing specialists, my choices came down to (1) proton, (2) IMRT, (3) SBRT, & a distant (4) surgery.

I chose 28 sessions of proton beam radiation + 6 months of Eligard.

We discussed what we would do if I had a localized recurrence, and depending on the nature of the recurrence, there would be choices of: focal therapy (e.g., cryo), brachytherapy, SBRT, and yes even re-radiation (since we were using SpaceOAR). Surgery would be a last (nuclear) option for salvage treatment just as it was for initial treatment.

There is rarely a “one and done treatment” for prostate cancer so, I wouldn’t focus on that too much.

My 28 Proton radiation treatments + 6 months of hormone therapy had no impact on sexual activity, incontinence, or outdoor activities.

Good luck with your decision.

Jump to this post

@brianjarvis
Thanks, so much. that's very helpful.

REPLY

If you trust your oncologist, do what he/she says. If you don’t trust him/her, find another oncologist. This is a long term relationship, so make sure you make a good choice. That said, you can get a lot of good questions to ask your doctor on this site.

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I am 62 years old healthy and very sexually actuve. PSA jumps between 4.5 and 3.2. MRI in April showed PIRAD 5 Lession approx 2.2 cm in the inner transitional zone. 13 core biopsy confirmed one core, 70% of core 3+4 with 10% being 4. One other core in different area showed 3+3 in only 10% of core. Had second opinion at Moffit in Tampa which matched exactly. Had CT and PSMA PET with both showing all confined to prostate only where identified. I did several AI tests that evaluated my biopsy. Decipher was not one. I Can’t remember some of the names but one was to determine if I was a good candidate for AS. That came back with a 42 and 49 and below says your ok for AS. AS doesn’t excite me though so I think I want treatment. One test described the chances of Metastification over a 10 year period and the need for ADT. This came back showing that I only had a 7% chance of Mets after one modal treatment and no need for ADT. Last test was Prostox which said I had a 95% chance of urinary toxicity (Grade 2) after SBRT and only a 5% chance after IMRT. This eliminated SBRT for me. I started out wanting a RAPP and it out of my body, but then got scared about ED and incontenece by reading blogs, so I started looking elsewhere. I had meetings with several different Drs and different facilities about focal theories and most said I was not a great candidate due to the size of my lession. Met with both Mayo and Sceonnti about TULSA Pro and was exited I found what I was looking for, but Mayo Dr said it would be his second option behind RAPP and chances were good if I did TULSA it would reoccur sometime later. Well after 7 mos of reading, visiting 3 different centers including Mayo and Moffit, and talking with 9 different Onocology / Drs, I think I’ve decided on removal, and I’m trying to schedule it with Dr Ram at Mayo for later this year. It does scare the crap out of me, but I think that would be the best to move forward. I guess I’ll pray for the best regarding ED and incontenence but will just live with it if it occurs. I chose RAPP due to salvage opportunities if/when it reoccurs and because success is easy to measure since PSA should be zero or close to it. I also feel I’m young and healthy now and can overcome surgery better today then I could 7-10 years from now. I really just want this shit out of my body and will face the other consequences that arise. It took me a long time to get to this point but I think I am ready to do it. I have a beautiful strong and loving wife to help me, and great family of support. Interested to hear everyone’s opinion if they were in my shoes.

REPLY
Profile picture for WingNut @ucfron

I am 62 years old healthy and very sexually actuve. PSA jumps between 4.5 and 3.2. MRI in April showed PIRAD 5 Lession approx 2.2 cm in the inner transitional zone. 13 core biopsy confirmed one core, 70% of core 3+4 with 10% being 4. One other core in different area showed 3+3 in only 10% of core. Had second opinion at Moffit in Tampa which matched exactly. Had CT and PSMA PET with both showing all confined to prostate only where identified. I did several AI tests that evaluated my biopsy. Decipher was not one. I Can’t remember some of the names but one was to determine if I was a good candidate for AS. That came back with a 42 and 49 and below says your ok for AS. AS doesn’t excite me though so I think I want treatment. One test described the chances of Metastification over a 10 year period and the need for ADT. This came back showing that I only had a 7% chance of Mets after one modal treatment and no need for ADT. Last test was Prostox which said I had a 95% chance of urinary toxicity (Grade 2) after SBRT and only a 5% chance after IMRT. This eliminated SBRT for me. I started out wanting a RAPP and it out of my body, but then got scared about ED and incontenece by reading blogs, so I started looking elsewhere. I had meetings with several different Drs and different facilities about focal theories and most said I was not a great candidate due to the size of my lession. Met with both Mayo and Sceonnti about TULSA Pro and was exited I found what I was looking for, but Mayo Dr said it would be his second option behind RAPP and chances were good if I did TULSA it would reoccur sometime later. Well after 7 mos of reading, visiting 3 different centers including Mayo and Moffit, and talking with 9 different Onocology / Drs, I think I’ve decided on removal, and I’m trying to schedule it with Dr Ram at Mayo for later this year. It does scare the crap out of me, but I think that would be the best to move forward. I guess I’ll pray for the best regarding ED and incontenence but will just live with it if it occurs. I chose RAPP due to salvage opportunities if/when it reoccurs and because success is easy to measure since PSA should be zero or close to it. I also feel I’m young and healthy now and can overcome surgery better today then I could 7-10 years from now. I really just want this shit out of my body and will face the other consequences that arise. It took me a long time to get to this point but I think I am ready to do it. I have a beautiful strong and loving wife to help me, and great family of support. Interested to hear everyone’s opinion if they were in my shoes.

Jump to this post

@ucfron
Hello, My Husband 68 years had more or less the same biopsy results as yours and was also offered AS. We decided on Surgery immediately but being in Canada there was a long wait time. Waited 3 months then had ADT for 40 days. By God's Grace we were given a slot on 15 september (2 months earlier than our given date) and we grabbed it. Again by God's Grace everything went well and back home on 17th. We had to stay an extra day at the hospital because my husband had moderate bleeding from one of the incisions but that was stopped soon after they gave him some blood thickener. Clips and Catheters removed after 10 days and no pain or incontinence. A lot depends on the Surgeon's skills and I believe it is God who leads us to the safe place.

REPLY
Profile picture for shalom7777777 @shalom7777777

@ucfron
Hello, My Husband 68 years had more or less the same biopsy results as yours and was also offered AS. We decided on Surgery immediately but being in Canada there was a long wait time. Waited 3 months then had ADT for 40 days. By God's Grace we were given a slot on 15 september (2 months earlier than our given date) and we grabbed it. Again by God's Grace everything went well and back home on 17th. We had to stay an extra day at the hospital because my husband had moderate bleeding from one of the incisions but that was stopped soon after they gave him some blood thickener. Clips and Catheters removed after 10 days and no pain or incontinence. A lot depends on the Surgeon's skills and I believe it is God who leads us to the safe place.

Jump to this post

@shalom7777777 So happy things are going well so far. Agree it’s in God’s hands and I’m praying mine works out good as well. Wishing you and your husband well. ❤️

REPLY
Profile picture for WingNut @ucfron

I am 62 years old healthy and very sexually actuve. PSA jumps between 4.5 and 3.2. MRI in April showed PIRAD 5 Lession approx 2.2 cm in the inner transitional zone. 13 core biopsy confirmed one core, 70% of core 3+4 with 10% being 4. One other core in different area showed 3+3 in only 10% of core. Had second opinion at Moffit in Tampa which matched exactly. Had CT and PSMA PET with both showing all confined to prostate only where identified. I did several AI tests that evaluated my biopsy. Decipher was not one. I Can’t remember some of the names but one was to determine if I was a good candidate for AS. That came back with a 42 and 49 and below says your ok for AS. AS doesn’t excite me though so I think I want treatment. One test described the chances of Metastification over a 10 year period and the need for ADT. This came back showing that I only had a 7% chance of Mets after one modal treatment and no need for ADT. Last test was Prostox which said I had a 95% chance of urinary toxicity (Grade 2) after SBRT and only a 5% chance after IMRT. This eliminated SBRT for me. I started out wanting a RAPP and it out of my body, but then got scared about ED and incontenece by reading blogs, so I started looking elsewhere. I had meetings with several different Drs and different facilities about focal theories and most said I was not a great candidate due to the size of my lession. Met with both Mayo and Sceonnti about TULSA Pro and was exited I found what I was looking for, but Mayo Dr said it would be his second option behind RAPP and chances were good if I did TULSA it would reoccur sometime later. Well after 7 mos of reading, visiting 3 different centers including Mayo and Moffit, and talking with 9 different Onocology / Drs, I think I’ve decided on removal, and I’m trying to schedule it with Dr Ram at Mayo for later this year. It does scare the crap out of me, but I think that would be the best to move forward. I guess I’ll pray for the best regarding ED and incontenence but will just live with it if it occurs. I chose RAPP due to salvage opportunities if/when it reoccurs and because success is easy to measure since PSA should be zero or close to it. I also feel I’m young and healthy now and can overcome surgery better today then I could 7-10 years from now. I really just want this shit out of my body and will face the other consequences that arise. It took me a long time to get to this point but I think I am ready to do it. I have a beautiful strong and loving wife to help me, and great family of support. Interested to hear everyone’s opinion if they were in my shoes.

Jump to this post

@ucfron
I have my prostate removed at 62. Recovered very quickly and was actually back at work in four days just on a very light schedule until the 8th day When I was able to work full-time. Since I spent most of my time helping people with computer problems, it didn’t require any physical exertion.

Because I had it at 62 and was relatively young for prostate cancer I had genetic testing about five years ago, 10 Years after surgery. I found out I have BRCA2 Which is the reason I’ve had four reoccurrences since 2010. Nowadays, they want you to have genetic testing earlier to make sure there’s not a genetic problem. Did any of your relatives have cancer breast cancer, pancreatic cancer and prostate cancer are all signs that it could be genetic

You can get hereditary genetic testing? Has it been offered to you by a doctor? You can get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

REPLY
Profile picture for WingNut @ucfron

I am 62 years old healthy and very sexually actuve. PSA jumps between 4.5 and 3.2. MRI in April showed PIRAD 5 Lession approx 2.2 cm in the inner transitional zone. 13 core biopsy confirmed one core, 70% of core 3+4 with 10% being 4. One other core in different area showed 3+3 in only 10% of core. Had second opinion at Moffit in Tampa which matched exactly. Had CT and PSMA PET with both showing all confined to prostate only where identified. I did several AI tests that evaluated my biopsy. Decipher was not one. I Can’t remember some of the names but one was to determine if I was a good candidate for AS. That came back with a 42 and 49 and below says your ok for AS. AS doesn’t excite me though so I think I want treatment. One test described the chances of Metastification over a 10 year period and the need for ADT. This came back showing that I only had a 7% chance of Mets after one modal treatment and no need for ADT. Last test was Prostox which said I had a 95% chance of urinary toxicity (Grade 2) after SBRT and only a 5% chance after IMRT. This eliminated SBRT for me. I started out wanting a RAPP and it out of my body, but then got scared about ED and incontenece by reading blogs, so I started looking elsewhere. I had meetings with several different Drs and different facilities about focal theories and most said I was not a great candidate due to the size of my lession. Met with both Mayo and Sceonnti about TULSA Pro and was exited I found what I was looking for, but Mayo Dr said it would be his second option behind RAPP and chances were good if I did TULSA it would reoccur sometime later. Well after 7 mos of reading, visiting 3 different centers including Mayo and Moffit, and talking with 9 different Onocology / Drs, I think I’ve decided on removal, and I’m trying to schedule it with Dr Ram at Mayo for later this year. It does scare the crap out of me, but I think that would be the best to move forward. I guess I’ll pray for the best regarding ED and incontenence but will just live with it if it occurs. I chose RAPP due to salvage opportunities if/when it reoccurs and because success is easy to measure since PSA should be zero or close to it. I also feel I’m young and healthy now and can overcome surgery better today then I could 7-10 years from now. I really just want this shit out of my body and will face the other consequences that arise. It took me a long time to get to this point but I think I am ready to do it. I have a beautiful strong and loving wife to help me, and great family of support. Interested to hear everyone’s opinion if they were in my shoes.

Jump to this post

@ucfron
Sounds like you've done your homework and even then, it's a tough decision. I get it. So many options all with their pros and cons. Thanks for the mention of Protox. I'm thinking of shelling out for it as medicare doesn't pay.
Giod luck, brother.

REPLY
Profile picture for shalom7777777 @shalom7777777

@ucfron
Hello, My Husband 68 years had more or less the same biopsy results as yours and was also offered AS. We decided on Surgery immediately but being in Canada there was a long wait time. Waited 3 months then had ADT for 40 days. By God's Grace we were given a slot on 15 september (2 months earlier than our given date) and we grabbed it. Again by God's Grace everything went well and back home on 17th. We had to stay an extra day at the hospital because my husband had moderate bleeding from one of the incisions but that was stopped soon after they gave him some blood thickener. Clips and Catheters removed after 10 days and no pain or incontinence. A lot depends on the Surgeon's skills and I believe it is God who leads us to the safe place.

Jump to this post

@shalom7777777
Thanks. Glad it went well. When presented with the odds of 30 or 50 oercent side effects, it's easy to forget about the 70 or 50 percent who are just fine.
Hope he continues to recover well.

REPLY
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