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Posted 8/4/2016 1:05 AM (GMT 0)

rosewood82 said...
I found a support group in Thousand Oaks and I am leaving now

Rosewood, is that the Westlake Village group that meets on Hampshire Rd? Several of us here attend that group. As a new person I would recommend that you go to their big meeting on the 3rd Saturday of the month (8/20), 10:30am. Email me if you need any details.

I had SBRT with Dr King in July '15. Again, email me (from my profile page) if I can give you any additional information.
Posted 8/4/2016 1:41 AM (GMT 0)
Rosewood-
I didn't know about the ECE (Stage T3a) - a bulge is really all they can know unless there is a post-prostatectomy pathological exam. If it's a large bulge, it's unlikely to be within the capsule. That would certainly make surgery precarious. In fact, the success rate with clinical stage T3 and surgery is dismal. You're right that "contained within the prostate" usually means stage T2. But I'm happy he's willing to take you on anyway.

SBRT is modeled after HDR BT, so they are, in terms of dosimetry, almost identical. Plus SBRT can treat areas outside of the capsule including pelvic LNs. Pretty much anything they can do with HDR-BT + IMRT, they can do with SBRT alone.

The next time you visit him, I can meet you there, if you like, and/or for coffee. I often go along on patient visits - Dr. King knows me well.

- Allen
Posted 8/4/2016 2:28 AM (GMT 0)
With your situation I would not be considering surgery. The forms of radiation ablate the prostate as effectively as surgery removes it without cutting or damaging tissues and nerves. Radiation will probably be needed after surgery so why do both?
Posted 8/4/2016 5:14 AM (GMT 0)
Max Vision- the support group I went to, my first meeting, meets 1st and 3rd Wednesday at the Goeble senior center in Thousand Oaks. I may go to the one on 3rd Sat. Allen not sure what you meant when you stated that you are glad he's willing to take me on when results are so dismal. You mean RP or RT. Of course I got more opinions from the group, they seem a bit more biased toward RP although no one suggested I do anything. Except keep options open. The two most knowledgeable (most verbal) both recommended a second opinion from an oncology group in Marina del Rey. Said they would be unbiased. But disagreed about urgency, me being a G9. I didn't write down a name only a phone number. I may try to get in but wont wait weeks. I did like all the men I met in the group and was glad I went. Just a thought about the two treatment options. If I do RP and they miss some cancer then radiation could clean up what was missed that wouldn't happen if I do radiation, the RO said no more radiation. Seems that with RP you get two chances?
Posted 8/4/2016 9:12 AM (GMT 0)
What I said was "In fact, the success rate with clinical stage T3 and surgery is dismal."

They are talking about Dr. Scholz in Marina Del Rey, whom I've met several times on patient visits. I don't think his opinion adds anything for you. He is a medical oncologist - not a radiation oncologist or a surgeon. He doesn't have any specialized knowledge or expertise in the fields you need. He is great if you have an incurable cancer - in fact, I just recommended him for that to 2 guys last night. And he is certainly not unbiased -- he wrote a book called "The Invasion of the Prostate Snatchers." The theme of that book is surgery is bad. He also knows very little about the details of radiation oncology.

- Allen
Posted 8/4/2016 4:17 PM (GMT 0)
rosewood...I sent you an e-mail about coffee if the timing works.
Posted 8/4/2016 4:49 PM (GMT 0)
Rosewood...It is hard to catch ALL that the doctors with different specialties tell you, and keep it straight, as it pertains to your case. Having Tall Allen offer to accompany you is awesome.
Posted 8/4/2016 4:53 PM (GMT 0)
Hi Rosewood,
As Nomar mentioned above, I had SBRT to my prostate and 3 bone mets some 5 years ago. Subsequent scans have shown no recurrence in the areas treated and no SEs to date.

Good luck,
Houseboy
Posted 8/4/2016 5:22 PM (GMT 0)
I may have answered my own question about RP with RT and HT. Read an article in Science Digest Review." The best indication for initial RP". To summarize because I type slow and may not have all the facts correct or understood.
section 3.1- RP monotherapy effective in men with cT3-PSA<10- no lymph nodes or SVI-5 year BPFS-60%. Also states CSS after RP at 5 and 10 year is 85-100% and 57-72%, respectively. "the reports support the use of RP monotherapy as a possible treatment."
Section 3.2- RP with radiation-either 78 or 56 % (two studies)of men needed adjuvant or salvage RT. The 5 year CSS rates of 95-98% and 10- year CSS of 90-91% and 15 year rate CSS of 79%.
There is a lot more info on this site but I will jump to conclusion.
Comparing OS conservative treatment was 5.2 years, RT 6.7 years and RP 9.7 years.
CSS was 7.8 for conservative treatment, >14 for both RT and RP.
Multimodality-Lau reported that treatment with adjuvant radiation appears to improve the 10 year progression -free survival rates but not significantly reduce death from PC.
Conclusion: "in well selected patients, RP, combined with adjuvant or salvage treatment when need, may result in better outcomes than RT alone, similar to RT plus HT."

So my question about using RT and HT after RP giving you an extra chance at survival doesn't mean much. It seems that RP-RT and HT gives at best the same survival as RT and HT. Which is what the uro and RO said. My hope of a RT boost after RP isn't valid.
LOL!! Allen don't think you were being negative but when you stated that' the success rate with clinical T3 and surgery is dismal' But it looks like the two treatments are equivalent so RT and HT are dismal also? No offense taken. They being equal RT-HT seems to have fewer side effects. Your input is greatly appreciated. I may take you up on a visit to Dr. King.
rosewood
Posted 8/4/2016 7:31 PM (GMT 0)
When you quote a study, it works better if you use the URL button (once at the beginning of the URL, once at the end). Then we can all look at the same thing, and know what you are referring to. Not all info on the net is alike -- sources matter a lot, and stuff about PC gets outdated quickly. But it sounds like whatever it is confirms what you already know.

I would add that the kind of radiation they are referring to (IMRT or 3D-CRT, depending on the date of the study you're quoting) is very different from SBRT. SBRT delivers a much higher biologically effective dose to the prostate, similar to HDR brachytherapy. It also delivers a very low dose to surrounding tissues, which limits its toxicity. Dr. King has set a goal of achieving the same kind of cancer control as the brachy boost therapy with perhaps lower toxicity in high risk men. If he is correct, it will be better than IMRT or surgery with adjuvant radiation. It's too early to know for sure -- this is new.

As I said, surgery with a diagnosis of cT3 has dismal outcomes. Many surgeons won't operate on patients with clinically diagnosed T3. In the Kishan study, they pretty much excluded from surgery anyone clinically (pre-op) diagnosed as T3 or T4. However, post-op pathology revealed that many were indeed pT3 or pT4. Many of those would have had adjuvant or salvage radiation. The "surgery" numbers in that Kishan study included men who had adjuvant/salvage radiation.

As you surmised, the reason one doesn't want to go into surgery with the idea of having radiation later is because the side effects of doing that are much worse than having either alone. Radiation is more damaging after the prostate has been cut out. If you have to, you have to, but it's not something you want to plan for from the start. Here's an article that talks about this:

Is Radical Prostatectomy Appropriate for Very-High-Risk Prostate Cancer Patients? No.

Also, please attach a signature with your diagnosis details. You can add it at My Profile>Edit Profile>Signature. You get it to show up by checking the box that says "Include Signature."
Posted 8/7/2016 12:31 AM (GMT 0)
Peeking back in for this one.

Tall Allen, yes my comments up in the thread were about the differences or significance in that study link specifically about EBRT vs. EBRT+BT. The watershed choice of any radiation vs. surgery seems of a different nature. Once radiation is selected, then the choice of adding BT or not becomes important. The referenced study showed significance in some areas, but the link does not say so for the addition of BT, except for the one metric of distant metastases. That's all my concern was about, in that adding BT adds cost, procedure, and risks, so it needs to really be worth it. The study summary anyway didn't conclude that except in one metric. Anyway...

Rosewood, I completely echo Allen's comments about high risk cases and surgery being a less effective treatment. I'm in the "very high risk" group since my 3T MRI indicated cT3, two 100% cores with 2 more high %, are indicative of escape, and my G9 5+4 is notorious for it too. All of that added up to my urologic oncologist really soft-pedaling surgery. He said he'd do it if I wanted him to, but it was unlikely to be curative, and would have to be a "very wide excision, without luxury things like nerve sparing.". So, this sounded like foreshadowing of serious side effects without curing the problem. He could barely make eye contact during our discussion, as there wasn't much good news.

So, off to the radiation oncologist we went. I did choose that method (IGRT by IMRT, no BT, with 3 years of ADT2), and now 3 years later I have an undetectable PSA, recovering testosterone, satisfactory sexual performance, and no incontinence. Essentially no side effects whatsoever (knock on wood). My RT + ADT experience has so far been very successful. ADT was rather hard to live with, and I'm hoping it's a long time, if ever, before going back on that. My treatment machine was a Varian Trilogy with RapidArc, a very quick and smooth process each time.

That was all 3 years ago, and perhaps there's more convincing support for adding BT today. But my RO was not a fan of it then, largely due to the increased side effects (urinary strictures, specifically), the limited number of centers doing it, and the limited proof that the cost and risks were worth it. Vanderbilt, where I was treated, is a referral center to treat those suffering side effects from treatments done other places. They saw patients with issues from BT treatments that were referred to them, and were cautious about doing it. Again, that was 3 years ago, and things progress quickly in the RT field. Maybe it's clearer now. There are some on this forum who had EBRT+BT and seem to be doing well. The experiences of a few individuals are only of limited benefit when selecting treatments, to be sure.

Specifically, I wouldn't lose sleep over not having BT added to your possible EBRT+ADT plan, in case that's still of any concern for you. You have to really, really study the studies you'll see linked here. There are marketing forces behind studies. There's bias in everything, and the exact cohorts, the cases in the studies, are critical. When you see studies, look them up, look for the details. Often not easy to do, since many links are only to abstracts with limited information. I've found it largely frustrating. The biggest problem is there simply aren't many of us "very high risk" cases. Studies with hundreds of participants will have only a few, 5-10 maybe, cases that are cT3+G9. It's just not very common, so there are few statistics they can develop from them.
Posted 8/8/2016 4:04 AM (GMT 0)
Redwing thanks for the encouragement, so glad to hear of a fellow G9 doing well. I have decided to do RT. Now the decision is SBRT or IGRT. Not sure if insurance cover SBRT but will find out tomorrow. The advantages to SBRT is I would be doing it at UCLA, if IGRT probably locally, it would be hard to travel to UCLA for 9 weeks. I read your profile and that you had 79.2 Gy's to prostate with SBRT its only 40 Gy. I realize that it is not the same treatment but is a Gy a Gy? Dr. King stated that the two would be equal in outcome so the difference should not matter. Also the SBRT requires HT for only 8 months instead of 2 years not sure why. And only 5 Rt treatments instead of 9 weeks. Everything seems to point to SBRT. Of course part of me feels I may be taking the easy way out. The SBRT would treat the SV and the LN. And as Tall Allen has stated SBRT acts as a BT boost.
Rosewood
Posted 8/9/2016 1:53 AM (GMT 0)
SBRT seems really attractive. A Gray is a Gray, but the effectiveness varies with dose. And that is heavily influenced by the alpha/beta ratio of the tissue involved. There has been an evolving understanding of that ratio for prostate tissue, and it was still quite contentious back in 2013 when I had my RT. Here's a link to an article about this "hypofractionation" concept /ro-journal.biomedcentral.com/articles/10.1186/s13014-014-0275-6. It appears that PCa's low alpha/beta ratio has been pretty well established, and that favors the fewer-session/higher-dose approach. So the lower total applied concentrated dose acts like a higher dose that's more spread out.

Tall Allen has shared links to studies showing that SBRT seems clearly a good choice for prostate cancer.

Eight months of ADT would seem like a walk in the park compared to the usual 2-3 years. If SBRT enables that, I'd be in favor for that alone! Also, 5 sessions instead of 44 would be wonderful. One can manage the 44 sessions, but those 9 weeks are a long slog. The SBRT-based plan is hugely attractive, but only if one is convinced it truly is as effective as the long-standing practices that are more widely known.

Good luck in your decision process. It's not easy, and not certain. Once you do make your decisions, in concert with your medical team, you'll find things easier when you're in the process. Do yourself a favor, and don't second-guess yourself once you embark on the plan.
Posted 8/12/2016 6:04 PM (GMT 0)
Hi everyone,
Thanks for all the input and links to different studies. It did help me make the decision to do HT over RP. I have chosen to do SBRT with Dr. King at UCLA. While Dr. King did not recommend SBRT over IGRT, I think after reading several links on this site and several other articles SBRT may lead to a better outcome, and probably no worse than IGRT. Although it seems accurate studies for high risk patient are few, studies for low risk and intermediate seem promising. I was also swayed by several clinical studies using SBRT on high risk patients, maybe there is something there.
Well I start next Tue. with a lupron injection followed by RT two months later. Now the second part of this journey (battle) begins.
Wish me luck

Rosewood
Posted 8/12/2016 6:15 PM (GMT 0)
Congratulations Rosewood-

the decision of what to do can be quite difficult; you sound happy with the resolution and positive going forward. I send you my wishes for luck, but I think you are making your own-

rf
Posted 8/12/2016 6:20 PM (GMT 0)
Rosewood...congrats on making a final decision. Good luck with the HT, which can be a slog. But eventually you'll get through it! Good luck!
Posted 8/13/2016 2:01 AM (GMT 0)
This is all interesting but I have come to believe that Gleason 9 PCa is incurable no matter what treatment(s) are administered. It's a life long ( whatever that means) battle. Side effects are bad no matter what treatment is selected. Your life has changed forever and you need to adjust to it. Maybe I should have chosen RT vs RP but who knows what, if anything, would have been different? I have no sex life (or desire) but at this point (age 72) who cares? I'm enjoying life and understand that it will probably be a lot shorter than I had thought. If (when) it gets to the point where I need treatments to add a few months to life, I'll pass.
Bob
Posted 8/13/2016 3:32 AM (GMT 0)
Hi Bob...I know what you mean about G9s being dealt a difficult hand. But I'd have to say that: 1) I'm more upbeat than you on the cure front and 2) even within G9 diagnoses, we're all different.

On a personal level, I do feel I can be cured and the nomograms support that. It's nowhere near 100% chance of a cure, but it also ain't 0%. I'll kindly settle for odds somewhere in between. And yep, HT royally sucks. But for must of us, it's a temporary sentence. (I say that with all due respect to the folks that have to stay on it for as long as it works.)

At age 55, I'm relatively young for this malady, but I'm at least 80% certain that it won't lead to my demise. It could...I don't want to get too cocky about this...but there's way too many other things preying on me that this friggin' G9 is going to take me down. As to SEs, I really don't have any. The lack of desire thing ends soon after HT (okay, maybe a year later) and I only pee about 80% of what I did before.

It's still early for me, but it appears that I drew a softer G9 card than you did. Maybe the OP did as well. Just my opinion, but I don't think all G9s are incurable. That said, it's clear from reading your signature that you have quite a battle on your hands--one that I can't fully imagine. But I'm heartened by your comment about how you're enjoying life and I hope that continues for a long, long high-quality time!
Posted 8/13/2016 3:52 AM (GMT 0)
Rosewood-

Congrats on making the decision. Everyone I know who had it done (4 guys), did really well with it. SEs are low, and so far, they seem to be cured. At least PSA remained low after hormone therapy was over. Say hello to Dr. King for me.

- Allen
Posted 8/13/2016 10:06 PM (GMT 0)
Rosewood, congrats on the decision. I think Dr King is great and SBRT will do you well. As everyone states, HT is a slog, but doable. It was good meeting you last week and I am sure we will see each other again along this journey. Take care and keep us posted. -JR
Posted 8/18/2016 1:23 AM (GMT 0)
Break 60-
Thanks for the post it, really made me feel crapty. At first I really wanted to lash out at you like you did to me. But I didn't and glad I did not. If you have read my profile, you know I have a good chance of going down the same road as you. I think about it a lot, you didn't tell me anything that I don't know. You were diagnosed 4 years ago at 68 and you are still going and trying to enjoy life as best you can. That's a good thing. I'm 64 and had my first grandkid 18 months ago with another on the way and know I probably wont see him graduate high school but want to see him play little league anyway. if it means HT and chemo so be it. There are guys on this site that have our diagnose in their early 50's. That seems worse than what happened to you or me. As far as being incurable one uro gave a 10% chance of cure (not sure what that means there seems to be so many definitions of cure out there) others uros gave me higher percentage. When you had your surgery you must have had hope of a cure. Ok it didn't work so why try to bring me or any other new G9's down. Why can't we have a hope of a cure like you did. I know you are bitter and hurting bad but even so. A friend of a friend mine liked to chew. he got oral cancer. He has had several operation to his jaw, hasn't worked. He's on a fentanyl patch 24/7. It has spread to lungs and kidney and he probably wont last a year. You have had 4 years and counting.
And like Andy Defresne from Shawshank Redemption said "hope is a good thing"
Rosewood
Posted 8/18/2016 1:47 AM (GMT 0)
I'm with you, Rosewood. We know how the statistics say this is going to go, but we can hope that one or more of the treatments can keep things in check for a while. Good luck in your choice of treatments.
Posted 8/19/2016 7:20 PM (GMT 0)
A kind Hello from RTR,

Just stopped by to say hi and say this is quite a ride.

There sure are some knowledgable people on here. Thank you for all the information and concern for our brothers.

We have all been encouraged to get second opinions..I think. When there is a disparity between doctors, even though I've researched extensively, I find it difficult to make a medical statement to a physician or reconcile the differences. How about you?

RTR
Posted 8/20/2016 1:09 AM (GMT 0)
Hi Rosewood,
I'm exactly six months ahead of you with the same doctor and SBRT treatment, altho slightly less time prescribed on ADT. So far so good for me. Also, I'm in the PCa group that meets at 6:30 pm on Hampshire in T.O. on the 2nd and 4th Wednesdays of the month -- including next Wednesday! Most of this group are radiation guys, so feel free to join in, and swap stories and info. Hope to meet you soon.
Jim
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