SBRT has excellent outcomes for intermediate risk patients

[Tall_Allen]

This is the 7- year update of the consortium study on 2,142 low and intermediate risk patients treated with SBRT (external beam radiation in 5 treatments). We EXPECT all therapies to work well on low risk patients, but the real benefit is for intermediate risk patients who are not candidates for active surveillance. The side effects are very low too (which I can personally attest to). Unfortunately they didn't have erectile function data from all the consortium sites, but SBRT boasts among the highest rates of potency preservation of any therapy.

pcnrv.blogspot.com/2018/10/...

[Hidden]

Hi, I've just joined Healthunlocked and see your name comes up quite a lot. Are you a doctor?

[Tall_Allen in reply to Hidden]

No. I'm a patient advocate who believes in patient empowerment and shared decision making.

[Hidden in reply to Tall_Allen]

Sounds great, how and where do you do that?

[Tall_Allen in reply to Hidden]

I did it in L.A. - from the man who pioneered its use for prostate cancer. Where are you located?

[Hidden in reply to Tall_Allen]

I'm in Odessa at the moment.

What does patient advocacy involve exactly?

Does it involve some training?

[Tall_Allen in reply to Hidden]

I don’t know if it’s available in Odessa, but brachytherapy, IMRT, and surgery probably are. What is your diagnosis?

[cesanon in reply to Hidden]

He is not a Doctor, but Tall Allen is in some ways better, because he is not held captive by established protocols and he spends the time to keep up with research. Time that most practicing Docs don't do. And don't need to do because all they need to do is to follow established protocols until someone changes those protocols for them.

[Hidden in reply to cesanon]

Good morning. That's excellent.

I was just wondering what a patient advocate does and how they do it.

And where? How would I find one in Odessa?

[Hidden]

Gee, I'm getting confused now, I was asking Tall_Allen about what a patient advocate is, cos he said he was. Up pops you. and now I need to set up a group?

Are you a patient advocate too?

[cesanon in reply to Hidden]

Nope, I have just been informed around a while.

There are also phone based support groups that are US based that you can participate in.

But there is no substitute for a local group where you can ask docs to come and speak.

[Hidden in reply to cesanon]

Sorry, I haven't got used to this site, I ask one person a question, but don't get an answer to that question. Then someone else pops up and gives me an answer to a question I haven't asked.

Nothing personal. Have I got something wrong?

I suffer from Aspergers, misunderstandings are an anathema to me.

[cesanon in reply to Hidden]

That's sort of how it works.

You can choose to private message someone here, but then others do not benefit from the answer.

And in tall Allen's case, it would be wasting a valuable asset of this forum, in my opinion at least

[Tall_Allen in reply to Hidden]

I endorse everything cesanon wrote. I have no idea what resources are available to you in Ukraine.

[Hidden in reply to Tall_Allen]

OK sorry to waste your time.

odessa-tx.gov/

[Tall_Allen in reply to Hidden]

Odessa Texas? Why didn't you say so? I know many Texans believe that there is no world of any import beyond Texas, but when one says Odessa or Paris, one naturally assumes it is the most famous cities of those names. People with Asberger's are normally more precise in their speech.

[kayak212]

Tall..just reviewed the article you posted on SBRT trials, results etc. When i initially joined this forum you were very helpful to me in several areas of understanding PC in the context of my own case. Since then my PSA has continued to rise to present 12.95% in May,2019. In Dec,2018 it was 11.40 and at that point my Urol recommended i start treatment. He turned me over to one of the Rad Oncs at Emery in Atlanta who specialized in EBRT. I have had 3TMRIs every December for the last 3 years and continue to be GS 6 based on 2nd op from Johns Hopkins in 2016 ..so I have continued on AS up to now.Anyway, i sent my last 3TMRI...Dec,2018 to Natl Cancer Inst for 2nd op due to a new lesion which the local MRI review said had shown up. Dr.Peter Choyke at NCI did not see that new lesion. My Urol said he didnt care and still recommended EBRT. At that point i told him i wanted a fusion guided Biopsy before i would decide on any treatment and what kind etc. He and i agreed to disagree and we fired each other. I had the biopsy....2 prior biopsies in 2015 and 2016 were blind...and im waiting for the results now.

Because my PSA is so high I am trying to decide which form of Radiation i should select if i do agree to start treatment. I am 79 and have diabetes and heart disease so a no treatment decision is something i am seriously considering. I hope and expect there will be no evidence of metastasis in the biopsy report but am prepared for anything due to all the confusion/disagreement from the last MRI...it did show NO METASTASIS. That said my wife and i will decide what to do based on the results and go from there.

The point of all this is that i have been looking at SBRT as the form of radiation therapy i would probably choose if i start treatment. My primary goal in selecting treatment is to minimize the side effects of any incontinence and from what i have read SBRT measures up pretty well on that...I think? As a result i have been searching for ROs who specialize in SBRT in the Atlanta area and have found a handful...there may be more...who look to be highly experienced in using that form of treatment.

Just wondering if you know of any ROs in this area using SBRT who you would recommend. I did send you one RO awhile back..not SBRT...and you steered me away from what he does due to side effect etc...THANK YOU.

When i get biopsy report in a few days i am sending it to Johns Hopkins for 2nd and depending on their analysis, going from there. Might even go up to Chattanooga to see Dr. Joe Busch for a final look at my case before i decide on treatment.

Will appreciate any recommendations etc you can offer. Thanks for what you do for guys like me in being such a valuable asset to us for informed information about PC.

.

[Tall_Allen in reply to kayak212]

I know there has been one mentioned to me, but I can't remember his name off hand. I think he was at Piedmont hospital. What are the names you are looking at? Maybe it will jog my memory.

You seem to misunderstand about metastases - they are outside of the local area of the prostate by definition. You will never find them on a prostate biopsy.

[kayak212 in reply to Tall_Allen]

Thanks for your reply...two of the Rad Oncs at Piedmont are Chad Levitt and Adam Nowlan...both do SBRT...also a Rad Onc with NE Georgia Radiation Oncology...Malay Rao..

On the topic of metastases...you are right...guess i do misunderstand. How do they find out if PC has metastasized if not through the biopsy?

[Tall_Allen in reply to kayak212]

Sorry- I don't recognize those names. Here are questions to ask:

pcnrv.blogspot.com/2017/12/...

They detect metastases with imaging.

[kayak212 in reply to Tall_Allen]

thank you very much.

[kayak212 in reply to Tall_Allen]

Tall...when you said imaging does that include a 3TMRI to identify if any metastases? My last one was December,2018 and I am overdue for another but still dont have a new Urol....My last Urol said he didnt see any point in following my case if i was determined to resist starting any kind of radiation given my rising PSA, Surprisingly, my PSA scores have for some reason actually been going down lately from 12.92 in Dec2018...to 11.75 in May,2019 to 10.14% in Jan,2020. I did start taking Metformin in Aug,2019 for my T2 diabetes. Dont know if that could have had anything to do with it, but my last Urol at Emory told me that unless i would commit to starting Radiation if/when my PSA gets to 15 or something similar, what would be the point of following my case? I still dont want treatment, but am not completely comfortable with just shutting down my condition and living with the unknowns. Because my P

SA went down to 10.1 last month my Urol agrees with my getting another PSA at his lab in April to see what it shows. Until last month all of my past PSA tests were at the same Emory lab. The last one wasnt so there is that. At this point Im not sure what to do . My Prolaris report from Nov..2019 was not as good as i had hoped it might be. Recently i met with my Cardio and PCP who manages my diabetes and both gave me an excellent prognosis for the lack of progression of those conditions saying that if they were me they wouldnt put too much weight on my heart disease of diabetes causing my demise in the next 10 years. Since i will be 80 next month I feel sort of on the cusp in re what i should do. Any thoughts appreciated.

[Tall_Allen in reply to kayak212]

I don't understand what you are referring to. You would use a bone scan/CT as the first kind of imaging to identify metastases.

[kayak212 in reply to Tall_Allen]

When you said imaging i thought that maybe an MRI would pick up metastases but i guess it only focuses on the prostate itself? When do you think I should consider a bone scan to evaluate my case? Every MRI or biopsy i have had said that the cancer was contained in the prostate starting in July,2015 to the present time. .

[Tall_Allen in reply to kayak212]

I don't know what you're referring to, but I don't understand why you want any kind of imaging if you are committed to watchful waiting. You would just use palliative medicine when you start having pain.

[kayak212 in reply to Tall_Allen]

I am just thinking about other possibilities because i do plan to meet with an SBRT specialist to explore that method of treatment before making a final decision on treatment. I dont feel my past Urols ...a team..have been objective about my case and since i dont have confidence in their recs I want to find a new one where i can get a fresh look...like possibly Dr.Joe Busch in Atlanta ..to take a careful look at my case. I need to get moving a little more quickly on this element so i can put this all to bed in one way or the other.Thanks for the feeback.

[Tall_Allen in reply to kayak212]

He has to rule out distant metastases with a bone scan/CT before attempting any curative therapy.

[kayak212 in reply to Tall_Allen]

Thanks. I didnt realize that. Appreciate the help.

[Handdrummer777]

I lament not being given the choice of SRBT. Instead I had 43 doses on VMAT, which is no slouch of a machine. I'm Gleason 4+3=7, PSA was 18 upon diagnosis. I'm crossing my fingers that RiED is not too bad down the line (RT concluded Nov 2018). At month 13 of 18 months ADT. Keeping proactive with the Loop, daily Tadalafil, mentally propping up libido, etc.

I must admit, though, that changing sexual orientation in the middle of ADT is quite the motivator for libido to keep going. And I didn't really see the changeup coming (that clearly) either. Oh well! Whatever gets you through another no-T night.

Bless you and your work as patient advocate. Good on ya.

[tallguy2]

Thanks for posting this.

[kayak212]

Tall....just saw this thread again and wanted to let you know that trusting in your guidance 2 1/2 years ago to have SBRT treatment was the best decision i have made since learning i had PCa in 2015. Since my SBRT in July,2021 my PSA has come down from 19.3 to the current .87. My next PSA test is in January and my RO and i hope expect a further reduction. Also glad i rejected any ADT as part of my treatment plan. Glad to see you are doing well and thanks again for all the help you provided while I wa struggling with my treatment decisions.