Can no longer be on active surveillance so now looking for the best options.
I'm told about Dr. Busch, Dr. Biagioli, the Mayo, the Cleveland Clinic, MD Anderson, John Hopkins, etc
Is there an accurate listing of who is rated as the country's best specialist in their field? If I'm need to travel and camp out, I might just as well be at the location of the best in their field! I'd like to be here as long as i can. Wrong move now and!!!!!!
HDR Brachy
LDR Brachy
SBRT
IMRT
Proton
???
It's not like there is the one best doctor out there - there are many excellent doctors. You are treated by a doctor, not an institution. You don't have to leave Florida:
HDR brachy - Matthew Biagioli
LDR brachy- John Sylvester
SBRT- Debra Freeman
IMRT- not really a specialty - any competent RO can do it
Protons- I don't have a name in Jacksonville
Surgery - Vipul Patel
I think Mayo does Pencil Beam Proton in FL they also do the Tulsa treatment in FL.
I had Proton Pencil Beam at Mayo in Rochester MN.
Hadn't heard of "pencil beam" Proton. What was your case that made you decide to go that route instead of the "more traditional" SBRT, Brachy, etc,? was it 2 months of treatments (away from home)?
Thank you Tall_Allen, I've made an appointment with Biagioli but it's a month away. Should he say I'm too far advanced for his type of treatment, it'll be more months of waiting shortening even further my window of opportunity. I wasn't all that nervous till this last report. This thing is upgrading too quickly for my comfort zoneI've sent my records to Freeman with no response as yet but will call them on Monday!
Do you see "Proton" to have any advantage (Steveo3312's pencil beam)? The radiology head at Moffit who claims to have a run a Proton department in Ca. says there is no longer any advantage over the latest SBRT (he doesn't do Brachy so he wouldn't offer a comparison). I see him next week for another consult since my condition has so much worsened.
Localized prostate cancer is very slow growing. You have plenty of time to make appointments and meet with specialists. I took about 9 months between diagnosis and treatment. It is much more likely that the cancer you found was always there but earlier biopsies missed it. What is your current Gleason score and PSA?
Pencil beam is just a more conformal way of delivering protons deep in the body. It is similar to IMRT with photons. It shapes the proton beams so that the near edge of the prostate gets as precisely shaped dose as the far edge. Passive scattering spreads out the Bragg peaks to thoroughly treat the prostate. It is similar to 3D-CRT with photons. There are technical advantages and disadvantages to each. But what is important to the patient is (1) whether it effectively kills the cancer and (2) what is the toxicity. So far, there seems to be no difference between protons and photons on either of these:
prostatecancer.news/2016/08...
prostatecancer.news/2016/08...
Proton is much more expensive (most insurance will not cover it) and takes many treatments, so I don't see any advantage for the patient.
TA, I am told a principal advantage of the proton beam is the dose can be delivered at the target and stops there. Unlike the photon which continues through the body delivering an unwanted "exit dose" to healthy tissue as it goes all the way through the body. Is that correct?
That is called the "Bragg Peak." Theoretically, it is true. However, in clinical practice there are a lot of reasons why healthy tissue gets harmed as well. To name a few: Protons are charged particles that repel one another, so the beam tends to spread out. They diffract from the nozzle edge. They are deflected from protons in healthy tissue. They interact with baryons to create secondary particles. Don't get me wrong, protons are just fine, but there is no evidence that they are less toxic than photons.
From January: Gleason 8 (15% of one core Left Peripheral Gland - Grade 4 (1 in 4 samples) while the other core is 10% of 3+4 grade 2 (1 in 4 samples)Latest PSA I have is from November at 3.74 (highest ever was 7)
Thanks
Marino
had my appointment with Debra Freeman today. She couldn't believe you were still involved in this! She did say to thank you for the recommendation and say hello
She seems to think that with the latest biopsy with only one of the 3 positive cores of 4+4 of the 17 total that SBRT without ADT could be considered. She is not a believer that HDR Brachy is a mono solution.
She does not appear to be a fan of the doc in celebration but does have nice things to say about Dr. Pow-Sang of Moffitt. however the latest radiation recommendations from Moffitt of IMRT, 2 yrs of ADT along with HDRBrachy is overly cautious.
Have not heard back as yet from Dr, Epstein so after that it'll be decision time.
Thanks for all of your help. Comments and opinions welcome
Good to know she is treating high risk cases. I think the lower side effect profile of the monotherapy coupled with the high biologically effective dose will prove to be a good option. But there isn't any long-term data yet, which is the concern for the patient.
Sorry but what did you mean by "coupled with the high biologically effective dose". Isn't monotherapy a single therapy without adding in any other forms of treatment.
SBRT has a higher biologically effective dose than IMRT.
Dr Epstein report has arrived but not much change in the all important 4+4 Grade 4 (down from 15% to 10%) along with a down graded second core from 3+4 to 3+3 Grade 1 (5%). negative bone scan with a "Clear" MRIDue to the longer life prognosis (from the data I've read) was seeking HDR Brachy from Dr Biagioli but newer data is showing some long term complications that SBRT doesn't seem to have (possibly because the SBRT data is non existent).
You don't appear to be in favor of surgery for high risk patients but am I really high risk?
Living only 5 or even 10 years are not my ideal options. I'm looking as far out as i can and trying to make the best decision with that in mind. So far i have not seen the possibility of a change of heart in this PC business. With all of the inconsistencies and lack of data for what is in my future, this has become much more than just a multisided coin. Real problem is there is no "do over" option nor am i finding a temporary viable "biding my time" option especially now that AS is no longer an option. Not sure i care all that much about ED (i'm 71), urinary and but especially bowel incontenance would not be great but I am trying hard to avoid any ADT due to its long term toxicity (shorter life expectancy)!
With only one go at it, would you offer what you see as my best direction?
You ARE high risk. High risk is defined (by NCCN) as Gleason 8-10 or PSA>20 or StageT3 or T4.
"but newer data is showing some long term complications " What are you talking about? Which newer data?
"possibly because the SBRT data is non existent" What are you talking about? There certainly is data. For example:
prostatecancer.news/2021/01...
"I am trying hard to avoid any ADT due to its long term toxicity (shorter life expectancy)!"
ADT used with radiation is only given for a limited term.
"With only one go at it, would you offer what you see as my best direction?" I already gave you a list of doctors to talk to.
I kept my appointment with Dr Biagioli. What a nice guy. Took his time to explain his procedure. He said that he could do 2 HDR Brachy sessions as a monotherapy and would be happy with that alone. Generally he would not recommend someone with Gleason 8 but with one core having only 10% of 4+4 and the other downgraded by Dr. Epstein to 5% of 3+3 he was confident of success with his procedure.I mentioned that i was looking for the longest life expectancy, with that, he went on to say that surgery would be my best option because, as you've said, there is not much radiation data out there beyond 10 years.
He agreed with the choice of surgeon, Dr. Patel being the best. But as such he might be 3-4months out. Waiting so long for treatment was just not a good idea. Should that really be the case, he said to go with Dr. Pow-Sang of Moffitt (as long as the wait was less than 3-4 weeks). Evidently he worked at Moffitt under Dr. Pow Sang and respects him and his ability!
So it's back to decision time. Allen you had SBRT but according to Dr. Biagioli that would not be appropriate for me (although Dr. Freeman was confident). Only HDR Brachy or surgery were his suggestion.
I don't know how to decide between them. Surgery has a catheter (who know for how long), incontinence (maybe a week or maybe years) along with probable ED and loads of healing time but radiation is an option should something go wrong. Longest life expectancy? Really?
HDR Brachy much easier on the body with the unknown being if the cancer returns there would need to be more radiation, ADT etc as surgery is not the preferred option afterwards.
What is your research telling you? No blame but a little push from an "outsider" with no skin in the game is all i'm after.
Thanks for your time
I don't understand the problem. You have two good options (HDR brachy and SBRT) and one less good option (surgery). You can also talk to John Sylvester about brachy boost - great long term data, but high urinary side effects). What I've learned is to never ask someone who does one treatment about a treatment he doesn't do. He really doesn't know, although he or she will surely have an opinion.
When i went to Dr. Freeman and Dr. Biagioli, as you suggest, both agreed to do treatment but both also made me feel a bit nervous as a Gleason 8 was outside of their normal safety net, general treatment boundaries (their willingness came from the 4+4 tumor being only 10% of one of the 4 core samples). Since the MRI and bone scan were both clear, with a confirmed Gleason 8 already 3 months in the past, i decided, pushed over the wall when a new surgery opening came available early in just 2 weeks, to not risk waiting and letting it metastasize (Genomic test coming back as HighRisk) it was best to just get it out.Healing was fast, catheter not that big a deal even though it was 14days. My biggest quandary comes from the actual pathology report. No Gleason 8! No Gleason 7 (4+3)! In fact only a 3+4 (grade 2) Pathology stage: mpT2NO was found. Don't get me wrong. i am down right feeling Wonderful to know of the lesser grade and no invasion, no extension or seminal vesicles involvement. However, even with the confirmation of Gleason 8 (4+4) 10% of one core from Dr, Epstein, how is it possible to have come back so much lower? What happened to the 10% 4+4 ?
I'm certain both radiation doctors would have felt much more confident in a great result but i too would not have felt so rushed as i could have even waited for Dr. Patel. It has me wondering if this was really my pathology!
I can understand a possible rise in Gleason (a missed higher grade cancer) but to down-grade so much (where did the original 4+4 go?) leaves me to question the current procedures altogether. Am i looking at this incorrectly?
GS 4+4 means that less than 5% of the biopsy core was pattern 3. But a biopsy core is just a small sample of the actual tumor. If the biopsy needle had approached from a different angle, or hit the tumor in a different place, or missed it entirely, it might have picked up 4+3, 3+4, 3+3, or nothing at all. That's why the doctors you spoke to were right to consider also the small detected volume.
Thank you for the reply
In 2017, I went to Busch for diagnosis of my small, contained, G 4+5. and Provision (Knoxville) for pencil beam proton treatment. So far, so good.Busch didn't treat back then btw.
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